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Rheumatologist suggests Tofacitinib Citrate (Xeljanz) for PMR

Posted , 9 users are following.

erika59785
erika59785

Has anybody tried this treatment for PMR?

After reading the side effects, I am very hesitant following her advise. 

I am taking Plaquenil for Palindromic Rheumatism , and I am doing well with the medication.  My concern is dealing with the bilateral discomfort and fatigue caused by PMR which I have had for 2 1/2 years.  She thinks that PMR should be gone after 2 years,  and to this day, my rheumy does not think that I have the problem. She says that I have arthritis.  I do have osteo-arthritis which is fairly common when one is 77 years old.

She said that prednisone will "kill me".  I am taking 8 mg and trying to reduce very slowly. 

Gentle Yoga stretching classes have helped me with mobility in my lower back and walking is fairly easy.

I took note and read the new findings by the Mayo Clinic about prednisone on this  website.  I will need to call her attention to it.

It is not easy dealing with a rheumy who goes by the book.  My GP suggested to get a second opinion by a different rheumatologist, but I have not heard if the referral is possible. I am in the US.

Thank you for your input.

 

0 likes, 17 replies

17 Replies

  • kay76924
    kay76924 erika59785

    Posted

    Hi Erika,  I've been taking Xeljanz for 4 years for psoriatic arthritis, and I found it to be the most effective of all the different treatments I've been prescribed.  I was diagnosed with PMR in May, 2017 for which I'm taking the usual prednisone.  I started at 10 mg, now reduced to 9 mg.  I asked my rheumatologist last week about taking both meds, and she said they are working together for both conditions.  The only side effect I've had from the Xeljanz has been occasional UTIs, as listed on the medication description.  I don't know if this is of any help to you.  Let me know if you want any more information about the Xeljanz.  Did your rheumy say why she believes the prednisone would "kill you"?   FYI, I also live in the US.  Good Luck!

    • erika59785
      erika59785 kay76924

      Posted

      Hi Kay, no, she did not tell me why taking prednisone for a longer period of time will kill me.  She probably thought that the side effects would.  I was on 12 mg of prednisone at the time.  I think I am doing alright with plaquenil for PR (Palindromic Rheumatism) and 8 mg of prednisone for PMR.  I don't have RA and I think that Xeljanz is used for this mainly.

      Thank you for your reply.

  • eddylynn36538
    eddylynn36538 erika59785

    Posted

    I have had pmr going on 12 years.  Saw my rheumy yesterday. I have been on 7mg for a month. Little stiffness in shoulders when I get up but gone within the hr of taking pred.  She said my esr was 49 and she would like me to stay on 7 for another month. In fact she said she wouldn't be fussed if I was still at 7 when I see her in 5 months. I don't have osteoporosis. My biggest side effects are fatigue and sweating after even the slightest exertion.  I am going to try and get down to  5 before I see her but she stressed I should avoid any pmr pain. My decision.  Very fortunate to have her on my side.   Sorry that your rheumy isn't as cooperative. Never heard of pred killing anyone. However my skin looks like it could all be dead with the welts, scars and bruises.   Good luck in reducing but go slowly.   Many reasons why I have had pmr for so long but won't bore you. 

    • erika59785
      erika59785 eddylynn36538

      Posted

      Thank you for telling me your PMR experience....obviously it can last a long time.
  • EileenH
    EileenH erika59785

    Posted

    I can't imagine it is approved by anyone for use in PMR - there have been no trials using it at all. And it doesn't work on what is the most likely mechanism for PMR - so why would you use it?

    I agree with your GP - for goodness sake get referred to someone who knows what they are doing - because your current rheumy obviously doesn't. 8mg pred is a physiological dose, the side effects are minimal below this.

    The new work from the Mayo is very important for us - the problem is going to be persuading doctors. One of the authors has written an article for the NE of England PMRGCAUK newsletter. Personally I'm delighted that there is now official backing for what I've been saying for the last 8 years - pred isn't half as bad as it is painted. But there is a lot of rehab to do!

    • EileenH
      EileenH

      Posted

      And a PS - she ISN'T going by the book since all the guidelines say that PMR may last more than 2 years, that is the minimum duration. And how does she propose getting funding? If she is saying it is for your palindromic rheumatism she is lying - and that isn't approved of!!!!!

    • freda07782
      freda07782 EileenH

      Posted

      Hello again Eileen, I always love your messages! I hope you never tire informing us all of your ideas and support. A huge thank you! My next move is to read the Mayo Clinic report you speak of. It's so encouraging to read that one can live a fairly normal life with PMR. How quickly we have all learnt about this condition. I for one didn't know it even existed a year ago! Now look at what we know! 

      Thanks again, Freda 

       

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, THANK YOU!  I appreciate your response and trust fully your opinion!  I will follow your advice and will get in touch with my GP about a referral which might take some time. I will certainly not use Xeljanz.
    • erika59785
      erika59785 EileenH

      Posted

      Yes, her lack of knowledge is appalling. I will mention or give her the print-out of the new findings of steroid side effects by the Mayo Clinic as of Aug. 18, 2017.  She will not like me, but maybe this will give her a clue. 

      She has no empathy and should not be a doctor.

    • EileenH
      EileenH erika59785

      Posted

      Or a pathologist - they don't have to relate to their patient... rolleyes wink

    • erika59785
      erika59785 EileenH

      Posted

      She certainly doesn't relate. What a pity that I have to deal with her.  I am so thankful to get caring advise from you and the website. 

       

  • brenda69464
    brenda69464 erika59785

    Posted

    Hi, I am new to this site.I have learned that PMR is unpredictable and that there is no timeline for the disease.My auyrvedic practitioner said that the symptoms can take as much as three plus years to abate and that we should not be in a hurry . He has also said to me that in some instances rheumatoid arthritis often behaves the same as PMR so it is worth the follow up with a rhuematologist.

    Good luck and stay positive.

    • erika59785
      erika59785 brenda69464

      Posted

      Brenda, thanks for the reply.  I have a different kind RA factor in my blood, and it is called Palindromic Rheumatism which effects the joints differently without damage.  The flares are VERY painful, but they go away the next day.  Eileen was very knowledgeable and helpful to point out this problem.  No, not  even my Rheumy thought of it.  Plaquenil helps avoiding these painful flare-ups.  I have not had one for a whole year!

      PMR is different with the bilateral discomfort in shoulders and lower back, and ONLY prednisone has helped for this illness. RA or PR is nothing like PMR.  Maybe you might want to tell your Rheumy this. :-) 

    • brenda69464
      brenda69464 erika59785

      Posted

      Thanks.

      I do not have a rheumatologist, only a GP. Living in this part of Canada I think the government would just as soon we died, than to treat our illnesses.

      I am fairly young (apparently) to have this illness and as such I cannot get in to see a specialist.

      I am doing very well on 15 mg of prednisone and feel just like I did before the PMR hit , so I will continue with it for a bit. I have n Ayrvedic practitioner and he says we will start to wean off in about 8 weeks and add some herbs to help with inflamation and pain(if necessary).I totally trust him as he has helped me with other issues that western medicine said could not be changed without prescription drugs.

  • reggie92967
    reggie92967 erika59785

    Posted

    Erika, My specialist, excellent, well known for treatment of PMR, is very comfortable with my 10mg. dose. I've been high as 40mg. , low as 6mg. The 10mg. seems to hold the PMR symptoms to a minimum. Also, my family physician is reassuring that keeping to 10mg. or lower, there shouldn't be worry as to longterm, nightmare side effects we're told Prednisone can cause, they tell me that's with the higher doses & longterm use. Reggie A.

    • erika59785
      erika59785 reggie92967

      Posted

      Reggie, thank you for your information and experience keeping PMR in check.  I have noticed that lowering to the utmost, has not helped.  I was not comfortable with 6 mg, and I am not with 8mg right now.  I will go back to 10 mg and see how I feel.........and not worry! 

      Erika

    • EileenH
      EileenH reggie92967

      Posted

      And there is now published work which says much the same - the PMR doses do not really cause long term pred-associated effects that are worth worrying about...
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