Sorry for being gone, husband on new med-

Posted , 4 users are following.

It has been a rocky few months,even though my husband was diagnosed only a few months ago. He was on steroids but now, so soon after starting steroids, his doctor thinks he has had an allergic reaction. He was put on ine steroid, had unexpected and atypical side effects and then put on another. 

Now he is on Enbrel and that is given by injection. He will be off steroids soon. We're both baffled as we thought steroids were a long term thing. I'm just look g for feedback. As far as I know Enbrel is not a steroid. 

0 likes, 15 replies

15 Replies

  • Posted

    Enbrel is a biologic drug - I've answered your other mention of it.

    If I were you and your husband I would certainly be asking questions about why Enbrel. That group of biologic drugs (anti-TNF factor medications) is specifically mentioned in the 2015 Guidelines for management of PMR as NOT being suitable for use in PMR. It has no beneficial effect in trials and was/is associated with adverse effects so that no justification for its use in PMR could be given.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    You will find the link to the recommendation in the link above.

    Enbrel can be used in an inflammatory arthritis that can present similarly to PMR, ankylosing spondylitis. However - I would want to have been told they'd changed the diagnosis!

    In PMR, if a doctor wants to try a biologic then the most appropriate one would be tocilizumab (Actemra) which has been successful in inducing remission in GCA - which is closely related to PMR and ther are a few pilot studies on using it in PMR. The main thing against it is its price, needless to say.

    • Posted

      Thank you very much for that link abd the information
  • Posted

    If he still has as definitive a diagnosis of PMR as one can reasonably expect, what were the different steroids that were tried?  I've read on this forum about people who could not tolerate pred actually doing well with either Medrol or hydrocortisone.  

    • Posted

      And I didn't do at all well on Medrol (all nasty side effects and no effect) whereas prednisolone and prednisone have been fine in both respects.

    • Posted

      Exactly, some people do well on one form and very badly on another.  I've wondered whether I'd have had fewer side effects at higher doses if I'd been on hydrocortisone which seems to be a gentler drug, but who knows and it's irrelevant now.

    • Posted

      It's probably only "gentler" in that it has a shorter halflife and therefore efficacy. Which means it has to be taken 2x daily to relieve the pain - so it's there  for longer in the end probably.

    • Posted

      I will gave to double check when he is here but I know that one was Prednisone. That was terrible for him. Then there was, as best I remember, a variant of Prednisine, which did help, but with nasty side effects ( depression was terrible ) . He looked like he'd gained 50 pounds when unreality his weight was stable.,

      I am also concerned about the quick reduction of steroids.

      One problem is that seeing a rheumatologist or other specialist can take months and the current one is not as responsive as I'd like. 

    • Posted

       None of the forms worked for him. He had a significant allergic reaction to one. I think they feel forced to look for alternatives. 
    • Posted

      They may feel they have to look for alternatives - but it would be more sensible to use one that might work. Or, alternatively - Not to use one that has been clearly stated by top experts not to help.
  • Posted

    As Eileen says I am surprised that his doctor has decided to use Enbrel. I know one or two trials have been done with both PMR and GCA, but they were not exactly encouraging. Do you know what the allergic reaction is? Do you know what steroids have been tried? I think I would ask some questions. How knowledgable is his doctor on PMR? 
    • Posted

      Near anaphylactic reactions with one steroid, severe sinus symptoms and major depression with the other . I am not calling the anaphylactic reaction as a true and full one, only because he did not stop breathing before we got to the hospital.

      The hives were incredible as well and blood tests at the hospital verified that this was a true reaction ( not anxiety or anything ).I suspected this anyway because he has not been unusually active. 

      I can't  say the same for me but I do my best to hide it from him.,

       

    • Posted

      I meant to write. " not unusually anxious" Also, I don't  want to scare anyone who is starting treatment. We were told his reaction was rare. 

    • Posted

      The anaphlaxis one is very rare - the depression/mood changes not so much.

      Nobody would expect him to take it again - hope it is in red all over his notes!

       

    • Posted

      I'm sure it is rare.  There are occasionally people who post that they were allergic to prednisone or prednisolone, which is the usual starting drug, but then they were all right with either methylprednisolone (Medrol) or hydrocortisone.  Sounds like he is a prime candidate for a completely different drug, i.e. tocilizumab (Actemra).  Unless, as Eileen suggested, they've changed the diagnosis, in which case you'd think he would have been informed.

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