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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.

0 likes, 33 replies

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  • meg83590
    meg83590 karen0310

    Posted

    All I can say is I'm so sorry that's Sounds awful. I have no advise only /

  • tony09890
    tony09890 karen0310

    Posted

    Try turmeric!   I’ve been on MTX, hydroxychloroquine and prednisone for around six months all to no avail, in desperation I tried turmeric.   I was stuck on 13mgs of prednisone for ages, every attempt to taper no matter how slow resulted in terrible pain but after starting turmeric I managed to taper by 1/2mg every few days until I got down to 9.5mgs in a matter of weeks without suffering any ill effects at all.   Unfortunately. I messed up with my meds shortly after and I’m now back to square one.   I’m currently trying MSM which also seems to help a little.   Interestingly, James Coburn who retired from acting due to RA credited MSM, amongst other non main stream treatments, as having cured him and went on to resume his acting career.    Certainly MSM has not cured me, I still suffer from terrible pain on a daily basis, but it has made a bigger difference than MTX, hydroxychloroquine and prednisone together. 
    • sherry29159
      sherry29159 tony09890

      Posted

      Tony I am about to start on tumeric. What is MSM? I probably should know but have brain fog most of time. How you taking tumeric? I want to take it fresh rather than tablet form. Thanks.
    • Jayne7831
      Jayne7831 sherry29159

      Posted

      Yes...what is MSM?  And where do i find tumeric with the pepper already included..everything i look at is tumeric only..and don't you have to take with pepper additive?

  • meg83590
    meg83590 karen0310

    Posted

    All I can say is I'm so sorry that's Sounds awful. I have no advise only sympathy! Good luck

  • frances85589
    frances85589 karen0310

    Posted

    Oh dear.bless you.all these drugs do have side effects.some people sail byou without any problems but it seems like any thing you try thy are attacking you. Methotrexate was good for me until it was either a choice of that or my liver.Nurse said to save my liver.I have tried 3 biologics and money worked for me.I can't have any more as I now have APS so have to be on warfarin for life.I take 15 tabs a day which include prednisone that have been on since 2012.Am on very high dose of pregabaling and am on sulfasalazine and hydroxy chlorine. The last have been on few days and am now dizzy and queasy in the morning.

    I too want to get off prednisone but consultant said I can't as he can't replace with any strong meds. I have tried to taper off myself and I feel so bad.

    I think you need to get more help. Do you have a specialist rheumy nurse that you can ring.They say these drugs take 12 weeks to get into and out of your system I know but they wouldn't let a dog suffer like this.?

  • cata
    cata karen0310

    Posted

    Karen the first thing to remember is that prednisolone  effects are reversible , the swelling, the marks,  the weight gain will go once you stop it. Also biological drugs sometimes take a while until the start working, all depends on the patient.

    I would advise to wait to see your rheumatologist before do anything because there are a lot of different issues going on and a complex situation like yours need to be acessed by a specialist. Can you write to him/her, or go to your family doctor and explain how desperate you are to speed up the appointment with the rheumatologist ?

     

    • karen0310
      karen0310 cata

      Posted

      You are correct about the complexity. As soon as one issue starts to resolve, another one pops up. I thought the lung problem was bad, but this adrenal gland thing is worse. I actually see my rheumatologist every 2 months; we've tried multiple biologics in addition to plaquenil & methotrexate. She sent me to endocrinology because prednisone is causing more problems than is helping the RA, but I can't get off of it. I waited months for this visit and just *knew* he would be able to help! He did explain why I'm having so much trouble (adrenal glands are kaput) but nothing about how to stop it. My rheumatologist doesn't know how to manage the taper in my situation. So now I'm waiting, again. I feel like I'm treading water. Thank you for reminding me the the effects of prednisone are reversible. I did lose sight of that.

    • cata
      cata karen0310

      Posted

      The thing Karen, is that the adrenal glands produce cortisol and respond to their levels in the body, for example shutting down their production when there are high levels in the blood. Your treatment with high quantities of corticosteroids for long time  mimicked that and your adrenal glands have been inhibited for such a long time that it is hard to force them to start working again. This is called 2ry adrenal deficiency (because it was caused artificially).

      Also to reduce your prednisolone is specially tricky  while RA is not controlled because in addition to the effects of lack of cortisol in the body, you will be having a RA flare on the top of it. So the 1st step should really be controlling RA.

      But if your RA can cope with a little less prednisolone you could try to increase the time after which you are introduce its lower dose (so make it more spaced ) or cut the tablets in half and reduce only half of the dose you tried before. You need to fine-tune how is right for you but it can be done. Remember though that it takes a while until you see the results so keep every change for a long time before you go to the next reduction.

      Even in the very small possibility that you might not be able to kick your adrenals  into work  you should be able to reduce medication/cortisol to a maintenance level of about 5mg to keep them going, so no side effects like the ones you see now. 

      My experience is that the more you know how things work better is the control you have over your disease. Fear and stress make the disease worse. And depression is one of the symptoms of adrenal gland issues too so be careful to watch for it 

  • tony09890
    tony09890 karen0310

    Posted

    All chemists stock MSM (methyl sulphanyl methane) in tablet form. Be advised MSM is going to cure you it's benefits are are minimal at best. Turmeric is not readilt taken up by the body without black pepper, in powder form it is difficult to stomach (yuk)) but is palatable with curries and beleive it or not, yogurt. Capsules are better than tablet form just make sure the capsules also contain pepper. When taken with bromelain (pineapple core) is also supposed to be more effective. Again, it is not a cure and it's benefits are minimal; but, when in pain every little bit helps...

  • tony09890
    tony09890 karen0310

    Posted

    Neither turmeric nor MSM interact with any medications I have checked on but google it to make sure. Sorry for the typos, fat fingers/small keyboard.
  • LayneTX
    LayneTX karen0310

    Posted

    Regarding prednisone taper, look up Bristol method, check out the forum for Polymyalgia Rheumatica, prednisone is all we can use.  I've tapered to 3 mg. 

    Also... Seriously check out people who have healed themselves by understanding mind and body reactions. I'm currently doing this and feel so much better. Our body is designed to heal. I'm betting the turmeric thing is often a placebo effect and maybe even the MSM, I'm drinking MSM flakes to heal my stomach and it is working, the prednisone messed up my stomach. I can PM you the guy name and book on body mind connection research he did he also has great interviews on you tube. Our body and minds are incredible, I'm pretty sure I made myself sick with stress and now am healing. 

    • karen0310
      karen0310 LayneTX

      Posted

      I was using the Bristol method when last I tried to taper. It's a good method. It's just that my adrenal glands aren't functioning & I I get hypoglycemic, hypotensive.. very sick.. even with the smallest changes in dose. The endocrinologist, in theory, was supposed to give guidance on what to do next.

      I will look at your forum today. I would love for you to PM info on the book. I'm so tired of feeling bad! Thank you for the suggestions.

  • karen0310
    karen0310

    Posted

    Thanks you all for your replies. It helps to know other people understand what you're going through. I have not heard of MSM but I will check in to it! I didn't have much success with tumeric though.

  • Guest
    Guest karen0310

    Posted

    Can someone tell me the symptoms of coming off prednisone? Exactly how do you feel?
    • karen0310
      karen0310 Guest

      Posted

      In general, a lot of people liken it to a flare: you have some pain, some swelling in your joints. Headaches, stomach upset/nausea, diminished appetite, fatigue are pretty common. That said, it really depends on how long you've been taking it and the dose you're on. In theory, 10 days at 5mg ought to be easier than 18 months at 20mg. But experiences are very individual and you mustn't get caught up in thinking that just because someone else had a hard (or easy) time, you will too.

      Don't ever stop prednisone without weaning off of it.

      The problem I am having is that I've been taking it at varying dosages for 2+ years. It normally suppresses your adrenal gland function (this is why you wean off; to give your adrenal glands a chance to kick back in). Unfortunately mine are in failure mode, so when I try to wean off, I get the "common" withdrawal effects, plus blood sugar & blood pressure plummet; I shake; I'm dizzy and weak; and I have palpitations and extreme muscle aches.

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