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Diagnosed two weeks ago with GCA and PMR

Posted , 9 users are following.

pam48607
pam48607

After sudden onset leg muscle weakness and high fevers for 3 weeks requiring hospitalization, I finally have a diagnosis of GCA and PMR.   My rheumatologist started me on 60 mg. Prednisone a week ago, and since I thought I knew better than her and was afraid of too high a dose, I took only 40 mg. at first.   My symptoms came back with a vengeance, so now I am taking 60 for a month.   The plan is to wean off after that.   

    I have a specific question for this group:  my rheumatologist wants me to try Actemra along with the Prednisone, but when I did some research and saw all of the horrible side effects, I told her no right now.  Does anyone on this forum take or have taken this drug?  What was your experience with it; any bad side effects?   

    I have to be very cautious with any prescription drug because I have mercury toxicity, which causes all kinds of symptoms on its own.   I have to get all of my drugs compounded because I cannot tolerate any dyes, parfums, preservatives, etc. in regular drugs.   Just curious about this drug's effectiveness.

0 likes, 24 replies

24 Replies

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  • EileenH
    EileenH pam48607

    Posted

    It is very new and there are not many people on this forum that I know of who have taken it. There are quite a few on the HealthUnlocked forum though. Use in the UK is very limited thus far - as far as I know individual applications have to be made for funding as it is very expensive.

    It is certainly effective - the Phase 3 clinical trials were reported about a year ago. Like all drugs the list of side effects is impressive but so are those for pred and this is the first option other than pred. Until now it has been pred or nothing.

  • Reeceregan
    Reeceregan pam48607

    Posted

    Hi Pam,

    Like you I have both GCA and PMR and have been on pred since 31.5.17. Started at 50mg for 2 months, just started reducing this month. I am in Australia and here Actemra is on the PBA list (govt listed meds so can get at normal script price) but only for patients diagnosed with Poly Arthritis, it is the only thing it's listed for.  When I asked my rheumatologist about Actemra instead of pred he wasn't excited at all....and especially not for GCA.  You don't muck around with GCA, as he said you stick to what you know works, with the ability to reduce asap to a manageable dose, and he doesn't feel there has been enough clinical trials yet anywhere in the world on GCA patients to warrant using it for this condition.  Even if he did agee I would have to be reclassified under our health system as only having PA...and that could be dangerous given the seriousness of GCA. You wouldn't want anything to happen that resulted in the proessionals needing to look up your online medical records to see you are being treated for PA when you really have a much more involved and potentiially life threatening condition. I wear a medi alert bracelet that has GCA/PMR and that I take pred and asprin engraved on it and that also is registered nationally online so it would conflict with the "reclassified" diagnosed PA. Not worth the risk. All drugs have side effects, it's just a balancing act. Good luck, I know how you feel, this is new to me also but there is amazing help and support  on this forum and I couldn't get by without it. Keep positive above all else, it really helps. 💪

    • pam48607
      pam48607 Reeceregan

      Posted

      Thanks Reeceregan and Eileen for weighing in.  When one is so sick, it is difficult to make decisions, but my gut is telling me to stay away from the Actemra until I see how my body reacts to the Prednisone.  I hope to be able to glean a lot of wisdom from this group.   
    • Rimmy
      Rimmy pam48607

      Posted

      I have similar feelings of hesitancy about Actemra - I was diagnosed in January this year and have tapered from higher doses of Pred for PMR/GCA to currently 19mg. Some of the things I have heard about Actemra haven't been very positive although it seems to have assisted others. The side effects of Pred are at least pretty well known now and even though there are many and some can be very unpleasant I prefer the 'devil we know' at this point. Fortunately not everyone has a bad time with these and I (for example) have managed the few I have had reasonably well so far. Obviously also regarding Actemra there is the matter of access/diagnosis and cost as raised by others here.

      All the best

    • EileenH
      EileenH Reeceregan

      Posted

      Does he really not think the GiACTA trial is meaningless? Just wondering - not criticising, it's a heavy duty drug but has been used for rheumatoid arthritis for about 7 years so it isn't an unknown entity and HAS been shown to be effective in GCA in combination with pred at the start but it allows much speedier tapering of pred to a much lower dose.

    • pam48607
      pam48607 EileenH

      Posted

      I had my reservations about Actemra when my doctor's assistant gave me a form to fill out if I wanted to get assistance paying for this drug.  The name at the top of the form is Genentech, which  is the company who manufactures Actemra.  No wonder they want to see if a patient wants "assistance" paying for this drug.   They needed all sorts of personal information including income, so I chose not to play their game.   Plus, they wanted to share much of my personal information with whomever they chose.   Actemra may be effective for some, but I have had so many adverse drug reactions which doctors assured me were "safe" that I just cannot take that risk right now.   Hopefully the prednisone on its own will do the trick.

    • Reeceregan
      Reeceregan EileenH

      Posted

      He was fine with it for RA, he seemed to think there wasn't  enough "history" yet of how it has worked  on GCA patients. Also, he certainly wasn't keen on it for me, whether it was because of my dicky liver or wether it was  because my GCA was only confirmed 6 weeks after  being on 59mg pred for PMR  so he was more " let's just work on reducing at the moment because we know it's working". 

    • Anhaga
      Anhaga Reeceregan

      Posted

      I was telling my RA suffering cousin about it, because mtx has affected her liver and now she has no medication, but then I read the tocilizumab is inappropriate for people with liver issues.  
    • Reeceregan
      Reeceregan Anhaga

      Posted

      Yes, I have since read that myself., and suspect this was his theory. I have s "black spot" on my liver which was found when having my gall bladder removed at the age of 50. It was biopsied and result negative, but have always had an " enlarged" liver for over 30 years that some doctors were sure was the result of too much alcohol....only I don't drink and never have. An occasional wine maybe once a month would top me. So it remained an "unknown" but monitored with regular LFT all my life and it works fine....just looks big. Given the PMR/GCA rapid weight loss I experienced which dropped me from 49kls to 40 kls....it's probably the biggest part of me! 😂😂

    • pam48607
      pam48607 Anhaga

      Posted

      Anhaga,

         What is "mtx" you refer to?

    • EileenH
      EileenH Reeceregan

      Posted

      If all doctors were likel him there never would be a "history" because new drugs wouldn't be used. That's how experience is gained! However - liver issues are a problem.

    • Anhaga
      Anhaga Reeceregan

      Posted

      I recently saw a program on superfoods which says that Italian research has proven coffee helps reduce enlarged liver.  I guess the Italians love their coffee so it was fun research for them!  The researcher said four coffees a day, but I thik she was referring to four cups of expresso.  And it can be decaf, whatever it is which helps it's something other than the caffeine.

  • alley2
    alley2 pam48607

    Posted

    Hi Pam I have GCA since May 2016 I am now on 9.5 mg of pred I have had 2 Infusions 1 a month of Actrema in the early stages of diognoses it cost arround the $1000 buy 3 infusions and get the 3rd free something like that bargain with the company I too am in Australia.  I got an infection in the Jaw could of had it before the Infusions or maybe not ended up in hospital for 8 days surgery to remove 2 back teeth we decided to stop the infusions and not take chance if it was the drug.  Anyhow that was for me give it a go I've heard good things though. All the best with it all.

    • Reeceregan
      Reeceregan alley2

      Posted

      Hi Ally2,

      thats interesting... did you have to be "reclassified" as having PA, not GCA? Or maybe the reclassification is only now it's on the PBA list. I was talking to a lady on another site who was one of the clinical "trial" patients here in Oz when it was originally being tested , and she had mentioned she too had to be reclassified for PA but I'm not sure if that was also during the trial (which has ended) or now that she can get it on script. 

    • EileenH
      EileenH Reeceregan

      Posted

      I doubt it - the GiACTA trial was specifically for proven GCA by TAB or other imaging. Maybe she had to be reclassified at the end of the trial which finished in 2015 I think. But I thought there was still some long term follow-up ongoing.
    • alley2
      alley2 Reeceregan

      Posted

      Hi I wasn't told of having to reclassify My specialist organised it all but I do have GCA I had my infusions July & August 2016.

    • Reeceregan
      Reeceregan EileenH

      Posted

      That could it. I know she mentioned the trial had finished so it must mean reclassified happened AFTER that, once it was finished.
    • EileenH
      EileenH Reeceregan

      Posted

      Who knows - though what usually happens is that if you are a person who ends up in the placebo group, you are guaranteed that if you need it and if it looks worth it, you will get the trial drug at the end of the primary end point. But maybe she'd stopped pred and had a relapse.

    • pam48607
      pam48607 alley2

      Posted

      Alley2,

          How did the Actemra help the GCA or PMR?   Did you have the IV infusion or the at-home under the skin infusion?   Did you have to pay for any of it/ insurance covered?  Did it help you wean off of Prednisone?

    • alley2
      alley2 pam48607

      Posted

      I had the infusion IV at the hospital Don;t know if it made a difference but I was on a chemo drug for 3 months didn't like that much not sure if that helped either maybe it did.  Had a fatty liver count was 330 now 30 approx diabeties 2 which is in control now losing weight.

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