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Side effects

Posted , 3 users are following.

jill62417
jill62417

Hi , I was diagnosed with RA 12 months ago. I was immediately put on prednisone. Since then I have been put on Arava which I had awful side effects  from so was taken off it while test were done and prednisone increased again. They tried me on the Arava again but still severe side effects. I was then started on methotrexate loading dose of 10mg & once again  side effects but as I was coming down with a bug at the time my Dr has decided to try again. I am on 7mg of Prednisone & took my second dose of methotrexate yesterday. I am only on 2.5 mg & today I have woken up feeling exhausted & my skin is very very sensitive,  it feels like I have sunburn all over but especially on my face. Even the inside of my nose. My lips feel like I have severe windburn. I also take folic acid 5mg on the days off from methotrexate. I was hoping to get off the prednisone but at this point I can't see that happening. Does anyone have experience with long term prednisone use? I would like to be able to just stay on that without these other medications that literally make me feel like I'm being poisoned. Also if anyone has experienced this weird sunburn feeling effect I'd love to hear from you, my Doc hasn't had anyone else report this so it's all making me feel a little distressed. It helps just being able to read about others out there going through the same things, it can feel quite isolating sometimes. Thanks

0 likes, 5 replies

5 Replies

  • sissie1012
    sissie1012 jill62417

    Posted

    Hello!

    I was diagnosed with RA almost 2 years ago. First treatment of methotrexate which I did not sleep 9 months, muscle spasms, swelling and could not walk. Then along came the Arava, extremes bruising and swelling and still cannot walk. Then Arava and Humira injections. Immediate Liver elevation but ignored. Six months later I changed my care to UVA. Protocol was to do a lung XRAY which had never been done at Lewisgale RMA, Salem VA Dr Lemmer. Mass on lung 2.5 cm turned out to ne no cancer cells found. The just completed a complete sonogram of my liver and all abdomen organs. Find out the results tomorrow. Meanwhile I cannot even be treated for RA and have been taken off all meds. Be careful with them meds. Make them do a Xray of your lung.

    • jill62417
      jill62417 sissie1012

      Posted

      Thanks for that. Yes I had terrible bruising on the Arava too plus hair loss. It's an ongoing saga but I'm hoping to find something that works for me. Wishing you the best of luck with your test results. Take care

  • Lisa_Batts
    Lisa_Batts jill62417

    Posted

    Oh Jill,

    What an awful time you've been through. My heart goes out to you.

    First of all let's start with the methotrexate (MTX). Having been on it for 2 years I have never heard of the side effects you are having... My advice would be stop the MTX immediately and get in touch with your Rheumy either by phone or letter. If you have a good one they should have a secretary and if I write to mine I get a letter within 12 days. Don't rule it out as an option though. There could besomething else going on. I went through Hell being put on MTX but persevered and now it's just a part of life and the side effects are minimal and it definitely works for me for the RA.

    Actually thinking about it.... If you are still having those side effects I would see a second doctor. I had to change doctors when I went on MTX because so many don't know the drug well enough.or go to the walk in centre if you have one or A&E...just to be on the safe side. I'm shocked your doctor didn't contact your Rheumy and tell you to stop it immediately with those side effects. If MTX isn't for you there are other drugs to try so don't give up.

    As for the prednisolone I don't know of any Rheumy that would leave you on that long term ...... It may help with the other drugs at first but it's not a cure in itself and you shouldn't be on it long term. I would get the MTX sorted first. Then you should (with your Rheumy's help) be able to reduce the prednisolone slowly. Reducing it most doctors don't tell you to do it gradually.

    It should be reduced by 5mg at a time (stay on that dose for a month) then another 5mg and when you get to 5mg it should be decreased in 1mg doses.

    Sorry if this is a bit rambly..... I'm not too well myself at the moment so my brain has gone on holiday for a while!!

    In short that's a severe reaction that I've never heard of and I would get it checked out.

    I think a lot of members in here will agree on MTX you have to be very pro active yourself with this drug and fight to get seen.

    I wish you luck

    Don't give up hope... There's something out there which will work for you but don't be left on no treatment. Fight to see your Rheumy ASAP.

    Try to have a good day

    ??🌻

    Lisa

    • jill62417
      jill62417 Lisa_Batts

      Posted

      Thanks so much for your help Lisa. My Rheumy called me today, he's pretty good & will always contact me on the day if I leave a message with his admin assistant. He has taken me off the MTX thank heavens, my reaction was getting worse, he thinks I'm in that low percentage  that suffer with more severe reactions unfortunately. I'm still on the prednisone & won't start weaning down until end of June also seeing the rheumy in two weeks so will be discussing my next option with him. Hopefully they will find something I can tolerate. It certainly a journey that's for sure. It's great to have these support forums, they really help. Thanks again Lisa I appreciate all your concern & I wish you well with Your RA.

      Jill🙂🌸

    • Lisa_Batts
      Lisa_Batts jill62417

      Posted

      I'm so glad you have a good Rheumy... I do too. We are the lucky ones!!! I'm glad he took you straight off it as well and I'm appalled your doctor didn't.

      Onwards and upwards... There are many other drugs to try but I would say when you are on your new drug always double check with your Rheumy if any problems. I have found through a bad experience that most doctors do not know enough about our treatments (especially MTX.... I was prescribed an antibiotic and just by chance my Rheumy called to tell me my infection levels were high and I told him I'd already been to the doctors and prescribed an antibiotic to which he told me to go to A&E immediately..... It was trimethoprim which is fatal with MTX and I ended up in hospital for 10 days)

      Unfortunately because it's a horrible disease the treatments are pretty vile but you will find one that suits you..... Just make sure your doctor is knowledgable about it!!

      So glad you've been taken off it.

      Good luck with finding the right one

      ??🌻💐

      Lisa

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