I just started methotrexate injection yesterday and today I feel like a train ran me over? everything hurts is this a side effect? I look on line and does not said is a side effect so I am wondering if it is my RA acting up? I just hope this new medication helps me and starts working fast on me.
The train description is the very one I used when I first started taking methotrexate orally. In fact, my previous doctor took me off it after 3 weeks because of the “train” effect. If you consider the listed side effets…headache, nausea, etc., it can all add up to a train. And everyone’s body reacts differently. The good news is that for most people, their bodies start to handle the side effects better over time. Once I started injections and got used to it over a few weeks, things were much better. I hope that is the case with you and it starts helping your RA.
Methotrexate…….been on it for almost 20 years. First oral which made me very sick and I had a great deal of hair loss, then for the past 16 years my wife gives me injections…… first 1ml weekly for years….been weaning off and now down to .5ml every other week and if tolerated will be down to .25ml weekly, then every other week. Got of the daily prednisone about 8 years ago. I use to be on that daily, gained a lot of weight, coming off that was difficult and shear determination on my part. Been totally off prednisone for over 4 years. At first when I got off of it, I used it for major flares and off within a week. I have had a very long journey with this RA, sever active. Tried Gold Injections, Enbrel, Humaria, and the infusion Rhemicade which my blood pressure dropped out, so no good for me. I am just down to the Methotrexate and my doctors are amazed at me and my attitude that I haven’t gave up. I will not let this disease get the best of me! They ask me what is my secret? I tell them B&B…..beer and bananas….lots of each! My liver is fine by the way….blood tests tell it all! I was diagnosed with RA 23 years ago.
Was diagnosed last Jan and started MTX (injection), folic acid and prednisone. Started Plaqunil in June and able to get off prednisone in October. I have been able to tolerate all meds very well, no hairloss, not feeling overly sick. Thought I was managing quite well. Now the big bummer..had a suspicious mole checked, diagnosed with Stage 2 melanoma. Between the excision of the site and new surgery coming next week for a sentinel lymph node biopsy, been off and on the MTX for several weeks. Already feeling the pain and stiffness returning. I am so fearful of infection after the upcoming surgery but I have to have this done. I really don’t know where this came from. The MTX, the RA? There is not much family history of melanoma. What in the world have I gotten myself into here??
Hi snapparms2, unfortunately melanoma can be a risk that comes with taking many (or most) RA medications. My doctor actually also told me that increased cancer risk is associated with autoimmune illnesses in general. There is likely no clear cause or line that can be drawn, but catching it early is important along with getting it removed and treated.
I have had some run-ins with suspicious moles and a pre-melanoma that required surgical removal. I found it helpful to have both my rheumatologist and dermatologist coordinate. With going off the methotrexate for the surgery, your doctors should be able to prescribe other treatments (like prednisone) to manage your RA. I also had concern about infection and made sure I told my doctors and had their help in watching for this potential problem. In general, up front and frequent communication with your doctors is helpful.
Hope these thoughts are useful. Wishing you a swift and smooth recovery. Keep us posted on how you are doing.
Dixie, everyone gets a different reaction from methotrexate (MTX). When I took it orally at first, it made me very tired almost like I had the flu. Oftentimes, the side effects will subside over time. Some people take it on a Friday so they can get over the side effects on the weekends. If the side effects continue to be bothersome, talk to your doctor. They can increase the folic acid amount. Some people find that the self-injectable form of MTX is easier from a side effect standpoint. Hang in there. It’s a powerful drug and with the side effects comes a positive impact on disease control.
Hi Dr. Lumpe, wanted to ask a few questions and thought I’d do so from this thread instead of starting a new one. I started the Methotrexate about 2 months and 3 weeks ago. I lost a lot of hair and was sick to my stomach among other issues so my Doctor decreased the Methotrexate to 12 mg (instead of 15mg) a week and increased the Folic Acid to 5 mg a day.
I remember my doctor saying on my first appt. that I should start seeing some improvement at 3 months. I have to say I don’t think it’s working for me that much. I am still losing a lot of hair and it’s not my thyroid as that’s been checked. The Methotrexate is still causing mouth sores and low grade fevers 99 degrees. The swelling and fever (fingers, toes, shoulders, elbows) has subsided, that I can tell, however, just to move is still a great deal of pain. Just doing regular chores I can feel it in all the joint. It feels like it was before just the swelling, hot/fever doesn’t happen. Does it sound as if this medicine is not working for me?
I ask because I’ve not been able to get back to the doctor since starting my Methotrexate due to insurance issues. The insurance tells me they’re working on it so I’m not really sure when I’ll get back to my doctor. I’ve also thought of weaning off the Methotrexate since I can’t get to the doctor because I feel I shouldn’t be taking such a powerful drug without doctor’s care. Could you please advise? I feel like I’m paddling a boat against the tide. Thanks, Dixie
Hi Dixie, Sounds like you’re in a tough spot and sorry you’ve been going through the ringer. I can’t really give medical advice and it will be critical that you see your doctor…keep pushing your insurance!
Hi Dr. Lumpe, I understand you can’t give out medical advice as a patient/doctor relationship but rather for general information purposes only. I worked for an online professional Q&A and understand those legalities. I didn’t mean to put you in that kind of situation. I know you’re not my doctor and this information is not a substitute for in person evaluations.
What I was asking though from your experience using Methotrexate, or anyone for that matter, does it sound like this medication isn’t working? Or could it take longer than stated three months? Just looking for a guideline as to whether or not I should still be having all these symptoms. I did hear from the insurance today and they are working on getting me another appointment. Thanks in advance.
Hi Dixie, no worries and just so you know, I’m not a medical doctor…just a Ph.D. and not in a medical area. I have a science background and the science geek in me causes me to spend too much time trying to understand what’s going on with my body.
Regarding methotrexate or any RA drug for that matter, you should be experiencing an impact within several weeks or months if it’s going to work. The diagnosis criteria used by doctors say that medicines should be switched if they aren’t working within 3-6 months. That’s certainly something you should raise with your doctor…once you can get in to see them. It’s good that you heard back from your insurance! Keep us posted and I hope you get to feeling better!
I understand that you are having difficulties with your insurance but the absolute best thing that you can do right now is get in to see your doctor as soon as possible, whatever it takes to do that. Unfortunately you may need to call and bully your insurance a bit so that you can get the care you need as soon as you can. Tell them it is unacceptable to wait any longer and don’t take no for an answer! Because really you should not be making these decisions without the input of your doctor.
And the fact that you are not experiencing any improvement in symptoms does not necessarily mean that the methotrexate isn’t doing anything at all. My personal experience with MTX was, like you, I didn’t notice any improvement when I was on MTX by itself. It wasn’t until I was on MTX combined with a biologic medication that my symptoms truly started to improve. I thought that meant that the MTX was never doing anything at all – until I decided that I wanted to get pregnant and had to stop taking the MTX. It wasn’t until it was gone that I realized it had actually been helping!!
I know this is probably frustrating advice – and I know from experience how difficult it can feel to fight insurance when you aren’t feeling your best. Please do the best you can to get in to see your doctor ASAP and hang in there!!
Thank you for responding. That is what I wanted to know if anyone thought the medication was working, because if it isn’t then I’d rather not be loosing my hair and be so tired I can barely move. Not to mention controlling the pains. I also understand about not having a medication. I ran out of the Meloxicam and it’s been really downhill now. I do understand what you’re saying and thank you again for taking time to give me information. Have a wonderful day.
Hello! I’m 58 and woke up one morning with 10 stiff fingers Dec. 2012 and every morning since. April 2013 I went on Plaquenil for a year and it helped reduce swelling for awhile but then stopped helping. July 2014 stopped Plaquenil and started 10 mg. weekly of oral Methotrexate. Didn’t see much improvement so increased to 15 mg. and when I didn’t notice a difference I increased to 20 mg (as RA Dr. suggested). Today will be my 4th time to take 20 mg. but I still have very swollen fingers during the night and early morning. So far I only notice the RA in my fingers and would not say its’ painful, just that the swelling is annoying. My fingers feel pretty good during the day and I can do my work as a sign language interpreter without noticing them much. The 20 mg of Methotrexate doesn’t make me sick so I’m thankful for that. Here is my burning question: IS IT UNREALISTIC TO EXPECT MY FINGERS TO FEEL NORMAL ON METHO AND NOT BE SWOLLEN AT NIGHT OR CAN I NOW ASSUME MAYBE METHO ISN’T WORKING FOR ME? OR DO I NEED TO GIVE IT EVEN LONGER THAN 4 WKS AT 20 MG TO WORK (EVEN THO I STARTED AT 10 MG 3 MOS AGO AND WENT TO 15 MG 2 MO AGO). IS THIS RX WORKING IN THAT I DON’T HAVE PAIN OR OTHER JOINTS AFFECTED OR SHOULD THE PM SWELLING BE GONE BY NOW, OR WON’T IT EVER BE? How much time do I give it or is it doing all it can do? Thanks so very much for any help in trying to figure this out! Linda
Hi Dixie. Sorry you having such struggles right now. Sounds like you have a lot going on. I’m not a medical doctor and can’t provide medical advice. You should always stay on a medicine unless directed otherwise by your doctor. You really need to see a doctor as quickly as possible.
Hi Dr. Lumpe, that was not me but Linda Deichsel that responded here. I don’t know why but instead of the last post that was posted it puts the question at the bottom instead of that last post. Really strange!
With that being said, last time I did post the appointment fell through with the insurance. I have now been untreated for about six months after taking Methotrexate for four months. Have gone downhill quite a bit. March of 2012 (when blood work finally showed up) at least I was able to work in the yard, I could work with a chainsaw for up to 6 hours with a few breaks. Now, I’m doing well to work in the yard even for an hour with extended breaks (no chainsaw).
So, anyone with a diagnosis, don’t second guess anything, go to the doctor and sit down and have a long talk! You are your best judge on how you are feeling when things aren’t quite right!
I am taking 6 tablets of methotrexate once a week. I started taking it on Friday’s but then decided to take it on Sunday so I had my weekend in case there were any side effects. So far I feel a bit tired the next day and a bit scatterbrained but otherwise not too bad. I was just wondering if anyone drinks alcohol while taking this drug. It says no alcohol while taking the drug but I was wondering if it meant no alcohol at all anytime or just when you took the drug that day. I am nervous because it also states that this drug is bad for your liver, so I don’t want to take any chances. I plan on asking my dr. at my next appointment, but would appreciate any input.
I take methotrexate and I do have an occasional drink. My rheumatologist told me it was ok to have 5 drinks max per week, no more than 2 in one sitting. I have followed those guidelines and my kidney and liver tests all show they are functioning wonderfully. I’m saying this, but I know other people whose docs have told them absolutely no alcohol. You should probably discuss it with your doctor and get their opinion. It’s also important to keep track of kidney and liver function. Hope that helps some!
Hi Dixie, sorry you’re having such problems with MTX. We can’t give medical advice here but I highly suggest you speak to your doctor right away about all of these issues. You shouldn’t start or stop a medication without speaking to your doctor. Can you call on the phone without making an appointment?
My rheumatologist started me on 10 mg of oral methotrexate per week along with 200 mg of plaquenil two times per day and 1 mg of folic acid. The oral methotrexate did not agree with me and caused nausea, headaches, fatigue, brain fog, etc. I had to take it on Saturdays so that I could work during the week. I did find that increasing the folic acid to 2 mg per day helped. I also take a multivitamin, D3, calcium, magnesium, and krill oil on a daily basis.
The rheumatologist then switched the MTX to injection and I feel SO much better. This was after a week of Arava which caused problems with my lips and mouth.
So far, I have not experienced hair loss – very grateful for that and fingers crossed.
Also, I have a couple of alcohol per week and have had no problems with the labs. The doctor said the same as another poster’s doctor – no more than five per week and no more than two in one sitting.
That is my experience. The trial and error of finding the right meds is so frustrating… I hope those with side effects from their meds find an alternative that works.
I’ve been taking methotrexate tablets for a month now, started at 10mg for two weeks, then 20mg for the following two weeks (20mg per week from here-in). I have not noticed any improvements in my symptoms yet, in fact I feel worse than ever. Incredibly sore and swollen, and completely exhausted. I was prescribed Prednisolone to help with the pain whilst waiting for the methotrexate to work, but so far I have felt to scared to take it. I have taken the odd Naproxen but I don’t think they do anything unless you take them every day for some time. I am hoping that the symptoms and side effects will “break” fairly soon and I’ll start to feel better. My rheumatologist said it could take up to 3 months before I start to notice a difference. So hanging in there with a hopeful heart at the moment. I can see from the comments how difficult this process is for everyone and that we are not alone. Best wishes and I hope things improve.
Karen, it does take some time for the methotrexate to work. For me it was about a month-six weeks. I understand your fears of prednisone. The long term effects of the drug are serious. However, short term usage can be very beneficial and make you feel much better. I personally love short courses of prednisone because it so helps my inflammation and makes my joints feel better. Plus, I get more energy. Hope you are feeling better soon. -Kelly (Site Moderator)
Your experience sounds so familiar – unfortunately. It just takes time for the MTX to start working. Are you taking folic acid? My doctor initially prescribed 1 mg per day and then I found 2 mg was better.
At my first appointment, I could barely walk or use my hands. The doctor gave me a systemic depomedrol shot, which is similar to the steroid your doctor prescribed for you. It got me moving again but it still took a couple of months.
It has been a year for me and there are still flares but not as bad. For instance, today it is in my ankles and left hip, but I can walk and do housework, etc. The fatigue is the worst, along with the emotional aspects. It helped me to read the study/survey on this site about how it affects people.
I hope and pray there is a treatment that will treat the symptoms more effectively. But I have to stress that it is better than it was a year ago. I am afraid that my diagnosis was so late that this is as good as it gets. I now recognize that I have had flares for the last 20 years. They got progressively worse and finally showed up in the wrists and fingers.
Maybe the steroid will help? What are your fears about taking it? The depomedrol shot helped me a lot. It got me back to work while waiting for the MTX and plaquenil to kick in.
So sorry that you are going through this. While on one hand, I wouldn’t wish it on anyone – on the other hand it helps to converse with others who are going through the same thing.
Try to think of it this way – one month down, two months to go. The steroid might really help.
I am taking folic acid for two days following the methotrexate. I have filled the prescription for Prednisolone thismorning after (again) not being able to make it through a day at work. The list of side effects scared the life out of me, but I have to trust my rheumatologist – I’m sure he gave me the prescription for good reason – I think it’s a 7 week course. I agree that the fatigue and emotional upheaval are quite the devil. Jane, it’s good to hear that methotrexate has helped you, I’m sure it must be a relief after living with this illness for so long. Thanks for your advice Kelly regarding the predisolone. Perhaps by the time I finish the course, the methotrexate may have kicked in. Best regards, Karen
Hi Rick, NSAIDs won’t have any impact on the progress of the disease and your doctor probably feels it’s time to begin with a disease modifying (DMARD) drug. Methotrexate is usually the first DMARD docs will try to treat RA. All drugs have side effects. The goal is to treat the disease while keeping side effects tolerable. Not treating the disease is not a good option as the damage done by RA can be serious and permanent. The most common side effects with methotrexate include nausea and sometimes hair loss. Some of this can be minimized by taking folic acid at the same time. Did your doctor also prescribe folic acid? If not, you should ask about it. Some people find that taking methotrexate on a day when they can better handle the nausea works. You can read more at the article below. I wish you all the best as you begin this treatment.
Unfortunately these are not uncommon side effects for methotrexate. It is possible that the methotrexate will start to provide you with more benefits. It is also possible that you will need additional medications to keep your symptoms under better control. For example, methotrexate was never enough by itself for me so I take methotrexate + a biologic (first Enbrel, then Orencia)
I completely understand how frustrating it can be to have insurance issues, but the very best thing you can do right now is speak to a doctor about this issue – someone who understands your personal circumstances. Sometimes it can be difficult to weigh the pros and cons of taking these medications. It is possible that your side effects could be better controlled with additional folic acid, or changing the time of day you take your methotrexate, or I have also heard people say they have had fewer side effects with the injectable version.
Perhaps your rheumatologist would be willing to offer a quick consult over the phone without charging you for an office visit? Otherwise I think the best thing you can do is stay on top of your insurance – though I realize that is easier said then done when you are feeling poorly.
Best of luck to you! And please remember that we are here to support you!
Thank you for your reply. It does help. It also helps to read the other people, like myself who have the same fears and problems. As I said, I have been dealing with what seems to me zero progress for about 14 months. I am 57 years old and have been relatively healthy my whole life. I am extremely thankful for this but it is very frustrating now to not be able to do things that I used to do.
Basically I went in to my primary doctor for my ankle which had been aching and hurting for several months. After x-rays, muscle relaxers, all with no results, he did some blood work and found that my RH factor was slightly elevated. It was then that I saw a rheumatologist. After many visits, and seeing a second doctor for second opinion, they “Think” that it is Ankylosing Spondylitis, a rheumatoid variant. Since then I have been on 3 different NSAIDs. 2 of those made me so ill, I almost couldn’t function.
I am just trying to make sure that I keep this beast at bay and not let it get the best of me.
I am tolerating the pain without taking any medicine most of the time, but it does wear on me as I am sure that it does everyone.
How long have you had RA? What are you taking for it? Do you have any special diet or workout routine that you do?
My heart goes out to all of those on this thread who have been and are dealing with worse me.
AS is similar to RA. Did they do the HLA-B27 blood test? The majority of people with AS are positive. If you have a positive rheumatoid factor test, I’m surprised you weren’t diagnosed with RA. It all doesn’t matter much as the treatments are similar. Either way, you should be on some treatment that impacts the disease process. Methotrexate is usually the first line of defense.
I was diagnosed in 2009 but had first autoimmune symptoms in 2004. I’m currently getting Rituxan infusions every four months and also take an oral med called CellCept. I’ve tried every diet out there – gluten free, low carb/sugar, lactose free, etc. – and nothing made any difference.
It was interesting reading all these questions and comments about methotrexate. I was diagnosed with RA about six months ago. My rheumatologist wanted to prescribe methotrexate, but because my baseline blood work showed some definitive liver issues, she was unable to do so. So, I spent all this time taking plequenil, which hasn’t done much at all. I’ve gone from 23 inflamed/sore joints to 18. And lots of pain. But the good news is that my liver seems to have settled down, and so I’ve started on methotrexate injections. The first few weeks went ok, as I took a lower dose. But once I injected the full dose, I got very nauseated and stayed that way. I was taking folic acid regularly. So I went back to my doctor after 3 doses, and she prescribed a drug called leucovorin. I went back to the initial low dose, and now take the leucovorin about 12 hours after the injection. I was fine at the lower dose, and am gradually working up to the dose she wants me at. I do get nauseated, but only for a short time, and by the next day I am pretty much fine, in terms of side effects. It’s early days, and I really hope this drug helps my RA symptoms. I have seronegative RA, and I am really really eating to get some relief from the pain. I cannot take prednisone or steroids, as I already have quite severe osteoporosis at age 54. Hopefully we can all get treatment protocols that help to address our varying personal journey with this disease…
After reading all the comments here about side effects of methotrexate I am feeling very blessed! I have been on it about 8 weeks with little or no side effects. No nausea or mouth sores and I am already bald so hair loss is not a problem!! My rheumatologist started me on 6x2mg. Last week, coming off the prednisone, I flared pretty bad and he has upped the mtx to 8x2mg. I will start that dosage this Sat. We’ll see how that goes. I’m hoping that the mtx works for me as I have tolerated it so well.
Dave, that’s great that you’ve been able to handle MTX thus far. I assume you’re taking oral pills? I guess there is one blessing of being bald! 🙂 It can take a couple of months or so for MTX to kick in with full impact and I hope it gives you some relief from RA.
Dr. Lumpe, As of today, I am switching to injections rather than oral MTX. I am going to be completely off the prenisone in 3 weeks. (We will see how that goes. We tried to come off it about a month ago and thing went sour in a hurry. My DR. had me to stay on it a while longer and upped the dosage on the MTX.) This time I am coming off of it, regardless. After my visit with him this week the plan is now to come off the prednisone and go on injections of MTX. I’m still on sulfasalizine, also. If things get out of hand I will go on a biologic. Hoping for good results. If I can maintain anything close to where I am right now I am going to be happy.
Good Day to all you wonderful people out there.
I posted on this topic over one week ago and have not seen it listed and hope that this re-submission will be listed and generate responses.
I was diagnosed with RA in October of 2012 and started treatment in June of 2013 with 7.5mg Methotrexate Tab. weekly as follows: 1 x 2.5mg Tab. on Mondays, 1 Tab. on Wednesdays and 1 Tab on Fridays. Plus 1 x 5mg Tab. Folic Acid weekly. Hospitalized in March of this year with very high fever, headaches and generalized body pains. Developed Thrombocetopenia with Petechiae and accompanying Tachycardia. Was given 6 Bags of Platelets and discharged with 5mg Folic Acid to be taken daily. No improvement after discharge in 2 weeks. Constant dry coughs and weakness. Collapsed during visit to Rheumatologist and hospitalized again on 22nd April. Treated for Pleural Effusion and had a CT.HRCT/CT.SCAN which detected Bilateral Lower Lobe Bronchiectasis. Discharged after 1 month With Prednisolone and 7.5mg Weekly Methotrexate. The Prednisolone was stopped after very severe symptoms with many sleepless nights. Followed up with visit to Rheumatologist and was placed on 10mg Methotrexate. Presently taking 2 x 2.5mg Tabs. on Monday Mornings and another 2 x 2.5mg Tabs. on Monday Nights 12 hours apart. Experiences frequent unination and thirst expecially at nights after taking tablets. Last Blood Tests on 10th of this month indicated anemia which is being treated with Trihemic 600 and high units of Urea, Bun, Potassium and Chloride. Currently I am stable but would like to know how I should treat with this Kidney Problem, Lung Problem and if there is anything I should do to assist in treatment. Would I experience a recurrence of an apparent bone marrow deterioration by taking the Methotrexate?
Many thanks for your reply Mr. Andrew Lumpe and thanks to all others for their inputs.
Christine, I’m so sorry for all the troubles you’ve been through. We are not able to provide medical advice on this site and I suggest you speak to your doctor about these issues. I hope you find some answers and relief soon.
My Dr. switched me from oral MTX to injections. The oral dosage affected me very little as far as side effects go. The injections make me feel very tired for a few hours starting about 2 hours after I do the injection. I am completely off the prednisone and have not flared. I was wondering if the injections had that effect on anyone else?
I’ve been on MTX injections now for 2 months, doing great as far as the RA symptoms are concerned. Not so good with the side effects of the injections. As I stated before, the pills were a breeze, no side effects hardly at all, they just were not working that well to control things. It seems like that every week the shots effects just worsened. Feel like I have the flu for 36-48 hours after taking it. I work full time so the only choice is weekends for the injections. Then my weekend is ruined! I went back to my Dr. yesterday and he cut the dosage from 1ml to .8ml and told me to take a Mucinex DM the day of and the day after the injection. I’m hoping and praying that this helps with the side effects. It’s not much of a trade-off: Relief from the pain of RA for 2 days+ of misery from MTX! We’ll see what happens! Anyone else heard of using Mucinex to counter side effects of MTX? Dave
Hi I am feeling confused with the treatment for my seronegative arthritis. I am a nurse and understand medications and treatment in general but somehow when it comes to me as a patient- I second guess everything. I think I suffer from too much information. I have been on MTX 7.5mg for almost a year, folic acid 1mg/day, taking humira since May every other week- which causes severe fatigue. So much do that recently I was able to get FMLA at work for the absences. For the past month and a half the pain has returned- I had none in my hands from starting humira in May to August, of course with all of the flare symptoms. Does this mean the humira is not working or do people who take it have flares like this. Me and my doctor and I are discussing new meds- he mentioned xeljanz but I am hesitant due to GI issue risk. I guess I want to know- is this the time that new meds are needed? I read that many people end up trying many different meds, how long is long enough to decide a med is working or not? Thank you for any guidance- Wendy
I have taken the oral methotrexate for years but 2 months ago increased the dose to 20mg by injection and have felt awful since. I have had 3 different sort of infections and feel very ordinary with no energy. I used to bounce back after the tablets as soon as I had the leucovorin. But nothing like this. Sensitive stomach as well. I have had bloods done and see what they say. I am thinking the high dose doesn’t agree with me.i dont think it is necessarily the injection just the higher dose. I became allergic after 2 years to the plaquennil when my doctor doubled the dose. So maybe I am sensitive to high doses of strong stuff. Anybody else had this problem?
Jane, Sorry that you are having those issues with the injections. I usually feel pretty lousy for 24-48 hours after taking mine. It varies week to week with me, sometimes it is pretty intense and other times not so bad. I was on Humira up until about 6 weeks ago when I retired and the cost went through the roof with Medicare ins. I found that with the Humira the side effects of the MTX were a lot less of a problem. Since I went off the Humira they have ramped back up. My Dr. is in the process of getting me started on another biologic. Hopefully the results will be the same and the MTX will not be as much a problem with the new one. Good luck, I hope that things get better for you. Dave
Thank you so much for being a continuously supportive member in our community. It is people like you who openly share their experiences that make Rheumatoidarthritis.net such a warm and welcoming place to be.
There is so much to learn from one another and reminding our members that they aren’t alone can make their day just a little bit better.
Good luck with starting your new biologic. We would love to hear about your progress.
Jillian (Rheumatoidarthritis.net Team)
Thanks Dave for your concern.My bloods were fine. So conclusion is virus with methotrexate dose or methotrexate dose not suiting me as i haven’t been right since increasing it. My rheumatologist is a 4 hour drive away, so she gives me advice to go on. Once i had started to feel better i can hear her saying if it doesn’t suit with the injections and increased dose go back to the tablets and the lower dose of 15mg where i felt fine. t my last visit she wasn’t happy with my swelling on my hands.
I have to say i thought they were good, its hard when you only see the specialist once a year.
GP seems always reluctant to suggest much i suppose because i have a specialist but at least i have improved.We are going away for a few days holiday and i thought i would miss my dose and start afresh next week with a lower dose. Such a juggle of what to do and eliminating causes and quality of days.
Thanks Jillian for your links to my methotrexate woes.My rheumatologist is a 4 hour drive away which is a pain in itself.There are none where i live. She is my second in 18 years and is lovely.My previous one was good but into too much research for my liking and i didn’t want to be a guinea pig.So i switched 2 years back.Because of the distance appointments feel a rush to achieve what i came for and make sure they have remembered specific needs. Yes she is aware of my plaquenil allergy which is why she reluctantly left me on a lower dose of methotrexate then at last visit a few months back suggested the higher dose. She thought the swelling in my hands and wrists weren’t good. At the time i felt good so i should have pushed my case. However she did say that if the injections were no good and the higher dose was too much go back to where i started. Trouble is when you are feeling awful all reason goes out the window and it has taken me a while to realise it is the higher dose. I even wondered if it was my voltaren upset by the antibiotics for the infection i had so i stopped them and stiffening began so as i love to walk my dog daily and just get about as we all do. i have gone back on at a reduced rate and so far so good. So conclusion is the high dose regardless if it is better is no good. At least i am on the mend. I was trying too hard to be a compliant patient.Thanks again.
It is good to hear back from you- I apologize for the delayed response. I am glad to hear that your current rheumatologist is lovely however it must be difficult to travel so far for each visit :/
Are you able to call her about your questions and/or concerns and is she readily accessible?
I am sure she understands how difficult it is for you to get to the office so maybe she would be okay with more frequent “check ins” over the phone? Just a thought.
I am also so happy to hear that you have found a treatment plan that is working for you.
Hi jbjb93! According to the manufacturer’s directions, if you are taking two doses of methotrexate daily, the doses should be spaced twelve hours apart. So, I would assume that many individuals take a morning dose and an evening dose. To be safe, I would double-check with your physician’s office. Here is some helpful information on the medication — https://rheumatoidarthritis.net/treatment/methotrexate/. I hope this helps and good luck with the new medication! I hope it works well for you! Best, Erin, RheumatoidArthritis.net Team Member.
I just finished reading all the MTX posts here and found it interesting to see how common the nausea was for most new users. When I was diagnosed in 2003 w/RA, I was started immediately on oral MTX + (all the common additions – sulfasalasidin(sp), plaquenil, etc, etc) Finally,a low dose of prednisone and MTX was the mixture that helped me the most prior to biologics.
I stayed on oral MTX all through the many additions of other drugs to my “cocktail”. Other than about 1 month of hair loss at the beginning of treatment, I had no problems at all until 2008/2009. Suddenly, it seemed as if the MTX which had been a staple just stopped working. My RA went into a nose dive flare that ultimately lasted for 2 yrs straight and led to my FT disability diagnosis at age 57.
Around mid-2009 we tried switching from oral MTX to injected. I still had no nausea but after about 6 months of injections of MTX, I woke one morning and my tongue felt strange and within a few minutes I found it difficult to swallow – and it quickly escalated to an anaphylactic reaction. I made it (by the grace of God) to the ER as I struggled to breath.
It was one of the scariest episodes I’ve experienced related to RA, but at the time, I was on so many different medications that we didn’t know which one had caused the reaction at the time, so I had to stop ALL meds! It was a nightmare since I then had to start adding back in, 1 at a time, each medication and waiting a few days (holding tight to an epi-pen)to see if I reacted. Since pain was an issue, the 3rd drug we added back to the ‘cocktail’ was the ORAL MTX once again rather than the injection. Altho it wasn’t as quick to react, within an hour my throat began to close.
We knew at that moment that the anaphylactic reaction was caused by the MTX. This was after taking it easily for 6 years!
My RA Dr was surprised by MTX causing such a drastic reaction, but I later learned from an ER physician, that going from Oral to injection to Oral is a KNOWN cause of this exact reaction and that my Dr. should have known that once using an injected MTX you should NOT go back to Oral MTX. Has anyone else heard that warning?
I’ve often wondered why one’s body can suddenly reject a medication that has previously worked so well. Has anyone else had a similar reaction to MTX? I think the ER dr. was more familiar with the reaction to MTX due to having to react to the emergency scenario more frequently than my RA Dr.
I think it’s a good warning for anyone taking MTX to be aware of the possibility of a severe reaction to these powerful drugs we all take… and to never take for granted just how quickly an allergic reaction can escalate. I have never had anything but Hives as a reaction to the many different and powerful drugs that I’ve used to treat my RA.
Strange that the Epi-pen should come under discussion at this time since I just watched the hearing regarding the surge in price of this life saving drug from $100.for 2 pens to $600 for 2 pens. The House Committee held a hearing with the CEO of the company that makes the pens inquiring as to how they could justify raising the price 5x higher and being the only supplier of this drug.
Anyway, it brings the point home to all of us that the drugs we take for RA are nothing to ‘sneeze’ at and that every one of us should probably be prepared to use an Epi-pen at any time while taking these powerful medicines.
Thanks for all the interesting comments on Methotrexate and your responses to it.
Connie, thanks so much for sharing your story! I had not heard that about methotrexate, though had a similar experience with becoming suddenly allergic to a drug (an antibiotic) that I had been taking for an extended period. Your experience is an important one to share. I also have heard of RA drugs losing their effectiveness after a period of time and have experienced this myself. It is very frustrating and I wish we understood why this happens. I am guessing our bodies become adjusted and so the drug just no longer works? In any case, it is good to explore other options as we may need them in the future. Take care. Best, Kelly (RheumatoidArthritis.net Team Member)
I’ll just say I’m glad this thread was here. I began taking MTX on Saturday night. I took it right at bedtime (4mg to begin, to increase to 6mg in 6 weeks) and I was pleasantly surprised how well my Sunday went. I’d been pretty scared to take it, especially because I’m in my final push to finish my doctoral (PhD not MD, just so there’s no confusion) dissertation. I was really scared I would lose too much time from it. My doctor had advised I take it the night before a “day off” because it could hit some people pretty hard.
Anyway, Sunday wasn’t bad. I was queasy, with bouts of lightheadedness, and just drained… but I still managed to go for a long walk. Monday, my pain seemed worse; and I again felt more tired, but I still went for a long walk. But yesterday (Tuesday) — I was in even WORSE pain, and the fatigue was almost unbearable at times. Took a short walk. Today (Wednesday), I swear I hurt even more and I’m even tireder. I started to wonder if it was the MTX.
It sounds like it could be, but it is so hard to tell. I am on Folic Acid every day too. I can’t remember the dosage. I dread losing any hair as I have long hair that goes down to my butt. It’s my only physical feature I am proud of. But I’m also pretty desperate to feel better.
34 yo, female, been diagnosed with seronegative RA. Tried plaquenil first but had to go off it because of swelling in my eyes (doc says likely not plaquenil related, but it could be made worse by the plaquenil). I haven’t complained about the pain as much as I should to my doctor because I guess… I guess I’m not convinced I should.
Anyway, switching gears to answer Dixie:
As someone who has had frequent insurance loss while being on some pretty strong medication, I would suggest calling your prescribing doctor. Even though you can’t get an appointment because of insurance, s/he might be willing to advise you as to whether or how you can wean off MTX if that’s what they think is best. They still have an ethical responsibility as your doctor even if you can’t afford to see them. Some places will even work out payment plans for self-pay patients, although I know that’s getting harder and harder to find. Anyway, I’d give them a call. They worst they can say is that they aren’t willing to help you. The best is they might be able to not only answer your questions, but find someone in their business office who can lean on insurance on your behalf. Sometimes clinics will do that for their patients, especially if patients have serious illnesses. Again, that’s been my experience, anyway. Good luck!!
Hi syzygy, hope that the methotrexate side effects get a little easier and that the medication helps relieve your RA. Definitely, keep track of how you are feeling and let your doctor know. It may be worth asking if increasing your folic acid dosage would help to alleviate the drug side effects. For example, when my doctor increased my folic acid from 1 mg to 2 mg, my liver function levels improved. It’s definitely important that your doctor monitors your liver with blood tests to make sure that the drug is not affecting it too much as well. Let us know how you do. Best, Kelly
Thanks so much for your feedback and suggestions. To be honest, I almost threw in the towel on the MTX this week. I don’t know if it’s because of other medications I’m on or what, but I am just FLOORED by even 4mg of oral MTX. As I described last week, it seems to hit its worst at around 48 hours after taking it, rather than in the first 24.
But I’m making myself stick with it a little longer. For one thing, I can tell a small difference in my pain level that I can only attribute to the MTX. When I’m not completely wiped out by it, I feel better and even have more energy. It’s just that the timing is really bad. I’m trying to finish my PhD and I can’t afford to spend 3-4 days every week completely wiped out. With the symptoms, I’m wiped out every day… but it’s more being wiped out by pain than fatigue. With the MTX, I’m starting to notice a relief in the pain… but I literally sleep 14 hours a night on my second night after taking it and spend my days nauseated, dizzy, and just… feeling like I’m on a sedative.
I’ve decided I can give it 1-2 more weeks tops. If the side effects (fatigue, really) don’t get better, I’m going to have to delay taking it until after my PhD is finished. I can’t afford to lose this time right now — but I also can’t afford the time I lose from pain. I feel like I’m in a no-win situation.
How have people dealt with this intense fatigue? I’m already on 1mg of folic acid. Caffeine doesn’t seem to do all that much to cut through it. Helps a little but not a lot.
Hi Syzygy. I have been on MTX for about 5 years at 25 mg weekly. They make an injectable version of MTX. Are you doing oral or injection? I couldn’t handle oral because of the nausea, but it got a lot better when I switched to the injection. They can also write a script for nausea if you need it. I have it and use it on occasion. MTX changed my life and made me more mobile. It isn’t for everyone and does come with risks, but for me, they were worth it. I built in a down day and was usually only out of commission for one day on the injection. Good luck with with your treatments.
Thanks for your input. I’m on the oral. And a correction — I wrote I was on 4mg. Duh. I’m on 4 pills * 2.5mg, so 10mg. I know that, after next week, she’s increasing me to 6 pills, so 15mg. I’m going to call and leave a message with the nurse about trying the injections. See if that’s an option. Sounds like that might be worth trying.
I can tell the MTX is working. It’s really nice on the days I’m not dragged down by the MTX… the problem is that’s only 3 days a week. I’m just trying to hold on. I actually talked to my PhD advisors this afternoon, and I may have to request some leeway due to medical ‘stuff’. Like I said, the timing just sucks. I am just struggling with the fatigue.
I’ll just try to stay patient, keep tracking my pain levels, and try to combat the fatigue. Hopefully it will get better as I adjust to the MTX or maybe injections will be an option!
So sorry to hear about the struggles with methotrexate. It’s hard when the drug is working for your RA, but bringing the hard side effects with it. KT’s idea of checking out the injections/infusion is a good one as some people report that side effects are better with that method.
You are also right that it may be taking the time to let your body adjust. My feeling is to give a drug 4-6 weeks to see how I handle it and let my body adjust to the side effects before I consider making changes (unless I have a severe allergic reaction etc). You could also explore taking the dose at a different time so that the worst phase occurs on a Sunday (perhaps Thu night or Fri morning?). I suggest asking your doctor if increasing your folic acid dosage a little may help with the side effects (I started at 1 mg and now take 2 mg).
Keep us posted and crossing my fingers that things get easier for you.
Oh Dixie_Darlin, I’m so sorry to hear about the issues you’re dealing with. Of course no one can tell you to stop or start a medicine here. But I will say that you definitely should be seeing a dr. on a regular basis when you start these toxic meds. I’m sure you know that. Are you able to contact your dr. by email or phone just to ask a question? I don’t know where you’re from, but my primary, and my RA dr. are both on an internet portal that I can access with questions. My primary is very quick in response, my RA does respond, but I don’t count on it until about 24 hrs. And if your dr. thinks it’s urgent enough, she can contact you by phone too.
I hope that may be available to you. As you’ve seen from comments on here, Methotrexate is one of the “standard” meds that you can be placed on to begin with. It can be combined with several other drugs and the “cocktail” can be the perfect mix for your treatment. It can also be a dangerous drug – as I experienced personally. I was on it for many years in pill form. Worked ok. I did lose hair in the beginning, but it slowed down within about 3 months. But after a while (years for me) it stopped working and the dr. placed me on injection methotrexate. I had an anaphylactic episode and just made it to the ER in time.
There was no warning prior to that of an allergic reaction so I carry an Epi-pen with me now. That can be a complication of any of the powerful drugs we all have to take to try and control this ugly disease. You may wish to ask your dr. to prescribe one for you – they’re expensive, but you can sometimes get assistance with the cost.
As far as getting relief after 2 mo+ 3 wks. In my humble opinion, that is a long enough time to have felt some change in your disease and as far as still having side effects, for me, they stopped sooner than the 3 mo. Others might be able to say how it affected them. Are you able to get in to see your primary dr if not the RA dr? Any dr. should be able to talk with you about reducing or stopping the drug rather than trying to do it yourself.
Have you tried prednisone? I found that is the only drug – as terrible as it is to your body – that controls my RA after 15 yrs. I am on a biologic, Orencia also, but it’s the prednisone that significantly stops the inflammation and swelling, but until you get used to being able to ‘self-diagnose’, it is not a drug to ‘try on’. I have used it for so long that I know when I must raise the level to interfere with a flare starting. It’s a last resort, but I know that it will work – for me – . I’m on a 5mg daily dose and have not been able to go any lower for many years now. I generally jump 5mg at a time until the pain is under control. Then I start the ongoing step down of steroids. NEVER stop them all at once.
You must be very stressed to be in the situation you’re in right now and I think that many of us have ‘visited’ that place at some point in our treatment, but the worst thing is not being able to get in touch with your dr. Once again, I don’t know your insurance situation, but sometimes our insurance provides a nurse hot-line where you could speak with a nurse, or to try to jump ahead of the approval process in your insurance policy due to an emergency. If you can speak with someone and explain what is happening, maybe you could get in to the dr. sooner.
It sounds like your dr. is taking an aggressive approach at 15 mg/wk at least compared to mine which was at 7.5mg/wk.
I do think you’ve been patient waiting almost 3 months without any intervention on a new medicine.
Please know that there are many of us here who have dealt with many sides of this RA devil and so you have a large group of experience to draw from – don’t be afraid to ask questions. There are many options of meds to try … don’t get discouraged.
Hello, this is my first post here. I got diagnosed with RA one year ago at the age of 35 just a few months after have twins. I have tried Plaquenil which I’m still on, leflunomide that caused severe stomach pains, sulfasalazine that made me feel crazy and was trying Methotrexate oral tabs when I ended up in the ER due to having an anaphylaxic reaction. My still have a lot of pain in my joints, especially my hands and horrible fatigue. I’ve had to cut back my hours at work from full time to part time. My Rheumy is now starting my on Methotrexate injections, which I’m scared and I have my epi-pen ready if needed.
Thanks for listening, Teresa
Hi Twinks80. Yikes! I can imagine trying MTX again would make me nervous too. The med worked for me, but I didn’t have an allergic reaction to the pills. All I can say is that the doctor must think you were allergic to a component of the pill and not MTX itself. He or she must suspect that the offending agent isn’t in the injectable version. But still… I would make sure you do it when someone is going to be home with you and keep that epipen close by. Please let us know how this turns out. I hope all goes well and this med turns out to be a home run for you.