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Feeling discouraged

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karen0310
karen0310

I'm just having a bad week.

I was taken off methotrexate & humira from Oct-April for a funky lung problem, and prednisone was increased to 20mg. I'm having awful effects from the prednisone -- visible ones like hair loss, facial redness, purple stripes on my belly like a tiger, very round face; invisible ones like abnormal liver functions. I desperately want to be done with the prednisone. But every time I try to taper off (even with an extremely slow taper), I have withdrawal symptoms.

In April I was allowed to try another biologic, Orencia infusions. At the first infusion, I was also given IV solumedrol...and man was that awful. I was pretty sure I was dying. I saw an endocrinologist yesterday, and it turns out that the prednisone has caused adrenal gland suppression. In April, they apparently shut down. This is why I'm having such a hard time coming off prednisone.

I asked him to please tell me how to safely taper off without causing an adrenal gland crisis again. His response was that he will leave that up to my rheumatologist. She's the one who referred me to him! To help with the taper! I couldn't make him understand.

I had an Orencia infusion this morning and feel headachey and awful. It doesn't seem to be working. No matter what I do, or what meds I take, I am stuck in a persistent flare state that never subsides.

The meds are supposed to help, right? I read that people can achieve a remission state. That isn't happening for me and I'm soooo frustrated.

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  • Rowbirdie
    Rowbirdie karen0310

    Posted

    So sorry to hear this.

    have you got a rheumy appt coming soon to discuss the Orencia treatment.?I don't suppose you can really reduce the pred until you have an RA med or meds that are working. I do hope you get there in the end. It s just so horrible going through the process of trial and error .

    rituximab has worked for me but it took me 18 months to taper prednisolone from 7 half mg to none. 

     

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      I know you are on rituximab and getting on well but its been a month since my infusion and I have got worse! I am so fed up. I can't see it working for me somehow.

      Sherry

    • karen0310
      karen0310 Rowbirdie

      Posted

      I have an appointment in a few weeks. But I am planning to message her on Monday & ask if we can move it up. I've been off work for about a month now, & am supposed to start back mid-August. If we're going to do something new, it either needs to be now, or will have to wait till end of September.

      The trial and error is so hard. I know it is just how it goes sometimes, but I'm not terribly patient to begin with .. I get scared and anxious when we've tried med after med and nothing helps. Thanks for your encouragement Birdie.

    • Rowbirdie
      Rowbirdie sherry29159

      Posted

      I had first infusion of my 3 rd round of rituximab yesterday and overheard the doctor saying to someone having their first round that it can take 2 to 3 months to work.

       I am also still on 3 DMARDS. About 6 weeks ago the rheumy nurse said to come off sulfasalazine over 2 weeks , then stop hydroxy but by then I was in a flare. Whether that was because I still need those or because I ' timed out' as infusion appt was after 7 months I don't know. I ve also had to go back on a prednisolone taper ( reluctantly) but it s the only thing hat s dealt with the inflammation and pain right now. So not as plain sailing as had been. 

      Do do you take other meds? Give the rituximab a bit longer- think it still could work. I expect your next appointment is timed for when you should be seeing results.

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      Sorry to hear of the quirks you are experiencing. Nothing is completely plain sailing. Yes I am on max dose of meths and hydroclorequin and just pinning my hopes on this bio. My new rheumy nurse just called me and just told me to go to.my gp who will refer me back to.my rheumy clinic. So frustrating. I am tempted to take some preds as I have a stash from before. My new rheumy nurse wouldn't say if I should take them or not. Said if cancellation came up he would call. me. my foliow up appointment is 31 august which seems so far away. But what can I do. Nothing. Just resort to steroids again. But fear it will hide true results of bios. I hope you settle down again xxx

    • sherry29159
      sherry29159 Rowbirdie

      Posted

      Message I just left you has to be moderated for some strange reason. I haven't said anything that i would have thought needed moderation!

    • frances85589
      frances85589 sherry29159

      Posted

      Mine too!! Crazy.Think mine was cos I put capital letters for shortened name of a disease.If I had put Antiphosphilipid Syndrome that would have passed
    • sherry29159
      sherry29159 Rowbirdie

      Posted

      I am on all the usual drugs. Inject 25mg MTX. I was hoping to get an earlier appointment but no luck. My appt is 31 august follow up of infusion. Seems a lifetime away! Tempted to take some preds. Worried it will mask effects of rituximab tho. Not sure I can hold out. Had to type a letter at library yesterday and my left hand fingers were all gnarled up. Worse than before rituximab.
    • sherry29159
      sherry29159

      Posted

      Hope your gets smoothed out. For both our sakes. If you have probs it doesn't bode well for me. :-(

    • Rowbirdie
      Rowbirdie sherry29159

      Posted

      i think they mean you need to type a space after a ful stop otherwise their moderating software reads it as though it was a link- 

      take care and thanks for well wishes. 

      hope you get somewhere with seeig rheumy a bit earlier.

  • tony09890
    tony09890 karen0310

    Posted

    Tapering prednisone too quickly will result in pain, usually in the same areas that you experince pain only more acute.
  • Babyboomer27
    Babyboomer27 karen0310

    Posted

    Hi Karen, I stopped Prednisone and now take Sulfasalazine and pain much less and no weight gain and chubby face gone.  Anytime you quit most prescriptions you need to taper off by taking one less one week, 1 less the following week ...until down to zero.  Or take every other day one week and every two days the next week.  Good luck😀
    • karen0310
      karen0310 Babyboomer27

      Posted

      Thanks! I see rheumatologist in a couple weeks & will ask about the sulfasalazine. It's good to hear the effects from the prednisone can go away. Take care! ??

  • timothy11402
    timothy11402 karen0310

    Posted

    I am so sorry you are having such an awful time. Perhaps your RA doc could talk to the endo guy or even send you to a different one. You are correct that you need to get off the prednisone as soon as you can. The best of luck to you.....
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