Newly diagnosed with RA

January, 2016 I woke up one day with my whole hand swollen, red and hot and hurting. This lasted a few days and then the other hand was the same way. I couldn’t move the fingers until much later in the day. It took about six months before my GP would refer me to a rheumatologist where I was diagnosed with RA. I now have all five digits on my right hand completely numb and the tops of the digits on the left hand are starting to go numb. I have been waiting for a referral to a neurologist for four months. My first prescriptions were methotrexate, folic acid, plaquenil and a 6 week course of prednisone. The prednisone had to be repeated for an additional 5 week course and then I began having mouth sores and flu-like symptoms for a few days after taking the methotrexate. She reduced the dosage in half and the pain, swelling, stiffness and heat is now in both wrists. RA has affected my feet making it difficult to walk as well. At my last visit the drug sulfasalazine has been added and in March I am to starting giving myself injections of the methotrexate. My concern is this; is this not a lot of chemicals to be putting into my body? It scares me but yet what can I do.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (13)
  • kingkatekong
    2 years ago

    Hi…I hope I am in the right place. It has taken 8 months to arrive here. My initial symptoms presented in such a way that I ended up at neurology with an EMG indicating I had what the doctor ultimately said was idiopathic neuropathy in my feet and my hand. Frustrated, I quietly went about my life until a few months later when I had a minor injury to my right index finger. It swelled disproportionately to anything that occurred. Again, the doctor was dismissive (and understandably so,) but within days of this minor trauma I literally watched a finger on my opposing hand swell. Neither of my fingers have returned to normal–the one on my right hand is 90% useless–both are breathtakingly painful when I inadvertently tap or bump them on something. I find myself crying almost daily now when I could go months normally without crying. The thing that is mind-blowing to me is that ALL my labs (and everything has been double and triple checked over the months) are normal. About four weeks after my initial injury to my index finger I started a new job and my sleep patterns changed–a fatigue never-before experienced set in and I literally felt like I was dying (not hyperbole.) This persisted and I finally ended up with a rheumatologist where I explained that I have “an unrelenting pain coupled with an inescapable fatigue.” It was this statement coupled with the clinical presentation of my symptoms (in spite of NORMAL labs) that prompted the doctor to prescribe me Enbrel. I’m not even a week in. I have tried Celebrex without great results–the doctor never stated I have RA, but he is treating me as such, which at my very first appt he said he would do so in the absence of normal labs/imaging, etc. So here I am. Everyday the sensations in my hands intensify–the pain is not limited to the joints in my fingers. The index finger on my left hand hurts to type, when I press on it, etc–I find it hard to fall asleep some nights because of pain and every night I wake up from the pain of simply trying to adjust a blanket, or moving my hand through a sheet–is this normal? I just wonder if I might have something else? I have always “muscled” my way through life–I have 10 times more energy than a normal person–I can usually go forever, but lately I find myself sadly and slowly succumbing to these very frustrating circumstances. Frustrated, confused and worried.

  • Bucks
    2 years ago

    Hi I am new to RA. I was diagnosed 6 weeks ago and on methotrexate and hydroxychloroquine. I’m just finding I’ve got really itchy joints in one of my fingers. Is this normal? I’m 58 and feeling very overwhelmed by it all

  • Richard Faust moderator
    2 years ago

    Sorry to hear about the diagnosis Bucks, but glad you have come to a community that can offer information and support.

    First, let me say that any new symptom or potential side-effect should be broght to the attention of your doctor.

    Here are two articles from our editorial team looking at methotrexate and hydroxycloroquine respectively:

    https://rheumatoidarthritis.net/treatment/methotrexate/
    https://rheumatoidarthritis.net/treatment/hydroxychloroquine/.

    I didn’t notice anything specifically matching what you are describing, but that does not mean it could not be related to medications. Of course, it could also be the RA.

    You may also want to checkout our Facebook page at https://www.facebook.com/RheumatoidArthritisDotNet/ where members of the community may have additional insights.

    Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • GingerS
    2 years ago

    I was reading this article. Thinking about how it feels at first. First I was scared because of the really horrible pain. As a nurse I know what the end disease looks like without treatment. I needed reassurance I would never reach that stage. The Dr I was seeing tried her best to get me into a RA Dr. asap. It still took 3 months. ugg. It’s frustrating when you know you can get help. Then have to sit back and wait.
    Now I take a cocktail of RA drugs and feel much better. But I do worry about the drug side effects. Just hang in there and know you have support. This site has been a tremendous help to me and all my questions.

  • RacingRedGranny author
    2 years ago

    Thanks for your input GingerS. I appreciate you taking the time to write. My RA dr. has been very good and is trying to find the right cocktail for me. However, it is frustrating having to try this med or that med and then having a reaction to it. The sulfasalazine made me so ill I had to cut that dosage in half as well. So taking half of that dosage along with half the dosage of methotrexate leaves me wondering if putting those chemicals into my body is any help in putting this into remission. I still have new joints flaring each day.

  • Connie Rifenburg
    2 years ago

    Oh how I hate to see even one more new person beginning their journey with RA. I will always remember what my Rheum Dr said when I was newly diagnosed and I wanted – no NEEDED – to have her tell me “How” did I get this? “Why” did I get this? Was it this, or that, or, or… I guess because, like most of us, it happens quickly and dramatically alters your life and for me, I just wanted an answer.

    She tried to answer my questions, or give me sites to read up on the disease, but finally, she looked me in the eyes and said “It doesn’t matter what caused the disease, once you have it, there is no cure.” Yes, it was blunt. But I also think it made me face the facts that what she said was true. There is no reason to look back to see why you got this RA (even if you could).

    For me, I needed an answer for my analytical brain, and so after reading and studying, I came up with an answer that I could accept by process of elimination. That quieted my brain finally and true or not, it’s the reason I tell myself when my questions start wandering again.

    You’ll get to know the ‘slang’ of RA too. Words like “flare” and “steroid anger” and “fatigue” (that you thought was something you used to feel when you ran a race or worked exceptionally hard for a time). But THIS fatigue is like no other. It doesn’t have rules either. It just happens. And sadly it happens when you have something you just must do! You’ll learn the signs when you need to call your Dr. and when it’s something that you “know” how to treat – with heat, cold, hot soaks, bedrest, or in my case, going up on my prednisone. I have oral prednisone in 20s, 10s, 5s, and 1mg strength. After having RA for 14 yrs, I know that the lowest I will ever go on prednisone is 5mg/daily. When I have tried all the other home remedies that I know sometimes help, including even muscle relaxers, I will go up to 10mg/daily for 1 week then begin to come back down, 1mg/ at a time. Sometimes, 10 isn’t enough, and I’ve gone as high as 60mg/day and then began coming down to my 5mg. In the hospital, they may go even higher in IV –100+ I’ve learned that if I get up to 40-50mg/ day, I need to go see my dr. But that is only after so many years of learning what helps my flares. In the beginning – stick to what the Dr. orders. With time you’ll gain personal knowledge.

    When you talk about the different meds you’re trying, those of us who are long term RA’s have worked our way through most of them. It’s common for them to work for a while and then stop, or you will have an allergic reaction to one that was previously working. It’s so complicated sometimes! And each of those meds carry their own side-effects that you need to decide are worth the relief they bring.

    Hopefully you will have a good working relationship with your Rheum Dr. and that he/she is open to all options for you to try – and if possible, take part in your treatment decisions. Read about the meds and ask questions. Don’t be shy – it’s your body and you have to live with these drugs daily. You should have the last say!

    Like I said, many of the people here have tried the “normal” RA drugs, and are settling in with their own “cocktail” of the right drug combinations for them. Don’t fret, they will find YOUR magic cocktail in time and it will be your ‘new normal’.

    From there, you will discover just how much you can challenge this RA devil and get away with it. There are predictions out there that can give you an idea of what to expect – when to expect it . Sometimes it helps to arm yourself with knowledge which can make you feel less vulnerable – a little more in control.

    Good luck as you gain more information about ‘your’ new normal. I have found this place to be full of info and empathy as well as some laughs and tears. But most of all, we’ve all been in that first step. Keep your chin up.

    Sincerely,
    Connie

  • RacingRedGranny author
    2 years ago

    Thank you so much for taking the time to ‘talk’ to me, Connie. You have covered so much about this horrible disease.
    I am so depressed about all of this. I am having a problem with the sulfasalazine now. As soon as I increased it to three a day, I felt so sick. The last few days have been horrible and I am getting really bad headaches, feel hot and cold all at the same time and almost wish I would just die! I’m not sleeping well either. I spoke with my dr.’s office yesterday and was told to stay with two sulfasalazine pills a day. I was also told I just had to put up with the burning in the palm of my hand. I hate to complain but how can I do anything while holding onto an ice pack to cool the burning. It has been 4 months since I was referred to a neurologist for carpel tunnel and still I don’t have an appointment. I guess I’m just having a pity party. This all started in Jan. of 2016 and I’m tired of waiting for meds to do something or waiting for appointments with specialists or waiting for pain to go away.

  • RacingRedGranny author
    2 years ago

    I have now been put on yet another medication, sulfasalazine. I am experiencing a lot of flu like symptoms and I’m not on the full dosage yet. I sure hope this goes away soon. I am having lots of trouble getting through the day and my sleep at night is horrible. I hate to complain when there are people in this world who are worse off.

  • Carla Kienast
    2 years ago

    Hi Red Racing Granny: Unfortunately RA does carry with it a lot of concern including the drugs that treat it. All drugs (even things like aspirin) have side effects and the good news for you is that the ones you are on are well known with a lot of history behind them, so your doctors should be well-versed on what to watch for. I keep coming back to something I took to heart soon after my diagnosis: Not treating your RA is worse than treating it. Without treatment, RA will only progress and may eventually lead to disability. With treatment, the progression can be slowed and help provide more years of productive life. Please don’t lose heart. Sometimes it can take a while to find the right treatment plan that works, but it’s definitely worth pursuing. I’d love to see some updates from you here.

  • Dave
    2 years ago

    I can relate to where you are coming from. As Richard said in his reply it is normal to be concerned about the meds and their effect on our bodies. However, I can assure you that the long term effects of untreated RA is a LOT more scary to me than the POSSIBLE side effects of the drugs used to treat it. I experienced the hand swelling prior to my diagnosis along with crazy screaming pain in both shoulders that landed me in the ER, my left knee and both feet (my feet are a total wreck because that is where RA started on me and it was around 4 years before I was diagnosed.) I don’t even want to think about where I would be in this journey without the meds. I am on weekly methotrexate injections, sulfasalizine, folic acid and monthly Cimzia injections. I have the methotrexate “hangover” every week after the injection. My Rheumatologist kept decreasing the dosage until we got it to a level that I can tolerate and that is the only side effects that I am experiencing at the moment. While the possibility of serious side effects are real with the meds, they have proven to be rare. I for one will take my chances and trust the Lord to take care of that side of it. I have experienced RA without the benefit of treatment and I DO NOT want to go back there! I hope that you and your Drs. find the right combination to get your RA under control ASAP. Good luck!

  • Richard Faust moderator
    2 years ago

    Sorry to hear about the diagnosis RacingRedGranny, but I am glad that you have sought out a community that can offer information and support.

    It is perfectly natural and you certainly are not alone in being concerned about the potential side-effects of the various RA drugs. In this article, one of our contributors refers to figuring out the trade-offs in deciding on treatments as the risk to risk ratio: https://rheumatoidarthritis.net/living/the-risk-to-risk-ratio/.

    It is important to remember that no one will serve as a better, more tireless, advocate for yourself than you. As this article on finding excellent doctors points out, it is always you prerogative to seek a second opinion: https://rheumatoidarthritis.net/living/finding-excellent-doctors/.

    Please know that you are always welcome to share your thoughts and seek information here. You may also be interested in our Facebook page located at https://www.facebook.com/RheumatoidArthritisDotNet/. Best, Richard (RheumatoidArthritis.net Team)

  • Eebtool
    2 years ago

    WOW!
    First off, I am just an every day Joe who goes to the office, sits behind a desk to earn a living and does it with Mr. RA, He is mostly under control but he has his days. Not an RA professional here.

    I am not sure how common the experience you are having in getting some positive treatment results is compared to others with RA, but it sounds like it is not getting you anywhere fast.

    Hope that something happens positive for you soon.

    We all need to evaluate what drugs can do for us, both in good and bad. There is always a risk when using these mad scientist concoctions. They can effect each of us a little bit differently and you should be discussing there use with your doctor as well as any other treatments that have not been tried.

    We need to get you racing again.

  • RacingRedGranny author
    2 years ago

    Thanks everyone for your input. You all seem to understand where I am coming from and certainly have had experience with this horrible disease. My inflammation levels have gone through the roof once again and I’ve been put back on prednisone. So far it doesn’t seem to be doing anything. I have been fitted for splints that go halfway up my arms. I’m having a problem wearing them due to both hands feeling like they are on fire. I’m carrying around ice packs to cool that burn. I feel this will continue until I get back on the full dosage of methotrexate. I pray it works quickly.

  • Poll