Suddenly, My Life Changed

By pansypotter

1 min read

Have had osteoarthritis for several years but have managed to cope with it mainly with exercise. Have always been very active. Able to run up and downstairs. Dig my allotment even though I am 75.

Experiencing joint symptoms

Last June whilst on holiday my right foot started hurting when I walked. By the end of the first week I had to go and buy a walking stick because my knee had become swollen and painful.

Seeing a doctor and a specialist

Couldn't get an appt with my surgery so went private. Couldn't lift my leg off the bed. Was told that it was OA and was given a steroid injection in my knee. This lasted for 2 weeks so went back to see the consultant. He passed me on to an RA doctor who said it was probably RA and that he would see me at my local hospital where he worked for the NHS. Thank goodness because it was costing me a fortune.

Starting treatment

He started me on Steroids for 6 weeks which helped quite a bit but also made me heavier. Then I was put on methotrexate. 15mg a week with folic acid two days later.

Managing the side effects

Been on methotrexate now for 6 months and although my feet and legs have improved my hands have got worse. The drug really makes me feel nauseous and I get so irritated at things that aren't really important. My hair is getting very thin. I have not had any consultation since COVID started apart from my monthly blood tests. I am wondering if it's the methotrexate or the RA that is making feel so bad. I am hoping to get some more info from coming on this web site as at the moment I feel as if I am not getting any support from NHS.

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L rick Phillips Moderator & Contributor
Hello pansypotter: I am glad you have joined our community. It is great to have you. I can only speak to my experiences and I hope it will not surprise you to hear me say it depends. for me I already missing most of my hair when I started methotrexate so i am not a good person to ask. I started losing my hair at 15 so as my wife says she is not sure if RA or methotrexate is making it worse, but it clearly is not getting better. Still I have heard of this as a side issue with methotrexate and Steroids. I have not heard of it as being an issue generally with RA, though I am scalp challenged. Likewise the general sense of malaise could be from Methotrexate or Steroids. i find that using methotrexate using makes me feel bad for about 24 hours after each injection. I know some say it lasts longer for them, and others do not have any additional issues with fatigue. As always I do suggest talking to your rheumatologist for specific information. I know this is so difficult. Perhaps when you call your doctor they can give you advice via an online meeting or call. rick - moderator 
1. pansypotter Member
 Shame about the hair. Got a call from the hospital yesterday to make a telephone consult on 17th Sept. Thanks for the info. Reading some of the stuff on here let's me know that I'm not alone in my struggles and makes me realise that there are folks that are suffering much worse than I am.
ashleyf Moderator
Hey there <inline-mention user-id="3237163" username="pansypotter"/> , we really appreciate you taking the time to reach out to us. That must've been really concerning to feel such intensified pain that came on suddenly. We know that it can be quite a long journey before finding a treatment plan that really helps you- and it's hard to know if a symptom is RA or medication related. Methotrexate can have some intense side effects for many people, with nausea and hair loss being pretty common ones. Many people who take Metho also take a supplement called Folic Acid- which can help with the hair loss side effect. Additionally, it is definitely helpful to take your medication with food so that it's actually being absorbed and not leading to intensified nausea. Our team member, Monica, wrote an article talking about her experience with Methotrexate that I think will be helpful: <a href='https://rheumatoidarthritis.net/living/fearing-methotrexate-side-effects' target='_blank'>https://rheumatoidarthritis.net/living/fearing-methotrexate-side-effects/</a> We really encourage you to reach out to your doctor and try to set up a consultation so you can share these symptoms/side effects with them... and if you feel like you're not being supported in the ways you need, it might be useful to look into getting a second opinion. We will be thinking of you. Gently, Ashley (Team Member)
1. pansypotter Member
 Thank you. I will read your friends article
brian-s Member
I had the same with my hands my rhumatoligist put me on plaquinal 1 a day it worked well for quite a few years helping my hands as I still played hockey and golf 
1. latoya.juniel Community Admin
 <inline-mention username="brian-s" user-id="3142183"/> I'm glad to hear that Plaquenil worked well for your hands and allowed you to keep playing hockey and golf! It’s encouraging to know you found a treatment that helped you stay active. Thanks for sharing! -Latoya (Team Member)
lindaj Member
I was on methotrexate for about a year and a half. I would take it on Friday night and then would be nauseous and ridiculously tired until Sunday night, time to get ready for work. We could not do anything on any weekend. I finally told my doctor that I had no quality of life, and she started me on different combinations of medication. The last time we were changing medications she gave me the options of more infusions, a shot, or a pill. I chose the pill and am leading such a better life now! (My hair has also grown back!) My final opinion is that although methotrexate is the standard for treating RA, it is not the only treatment for RA. There are many new medications out there and you can work with your doctor to find out what is best for you to help you lead a happier life!