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Reducing Prednisone with Actemra

Posted , 16 users are following.

cindy828
cindy828

First, let me say how easy it is to reduce prednisone using Actemra instead of methotrexate. I have reduced from 20 mg to 10 in three weeks without fatigue or pain.  Previously, using methotrexate  and the dead slow method, it took me 6 months to reduce from 20 mg to 10. I was bumped back up from 10 to 20 because of possible GCA. My doctor wanted me to increase to 60 mg, but I just couldn't do it given the fact that it took me 6 months to get to 10 mg.  

The drawbacks are that it's very expensive.  My primary insurance covers most of it, but it has a $750. monthly co-pay, which fortunately my secondary insurance covers. And secondly, it is a shot.  Originally, I thought this was going to be awful, but it's so easy and it doesn't hurt a bit.  I do not like needles, but doing it myself gives me a sense of control which is actually quite affirming.  The first one is the scariest, after that it's a breeze.

I know that reducing from 10 mg to 0 is going to be more difficult, but I'll keep you posted.

4 likes, 20 replies

20 Replies

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  • EileenH
    EileenH cindy828

    Posted

    Good to hear it is working for you. The difference is almost certainly that Actemra/tocilizumab actually has an effect on the disease process whereas mtx merely potentiates the effect of a given dose of pred - maybe, no guarantees given.

     

    • linda17563
      linda17563 EileenH

      Posted

      Am I right in thinking it is only available in this country (UK) if you have GCA,  or not at all yet?
    • cindy828
      cindy828 linda17563

      Posted

      Linda,

      I'm in the US and I don't know where it's available other than here.  After a vessel biopsy, it was determined that I did not have GCA.

      Cindy

    • EileenH
      EileenH linda17563

      Posted

      It is available in the UK though I think only on a case by case basis and yes, only for GCA yet. There have been no proper clinical trials with it in PMR. 
    • EileenH
      EileenH cindy828

      Posted

      A negative TAB doesn't mean you don't have GCA - it means only one thing: they didn't find the giant cells or any signs of inflammation IN THE SECTION OF ARTERY THEY LOOKED AT. That isn't the same as "you don't have GCA". GCA doesn't affect arteries evenly - and you can have GCA in one artery and not in another. Or even in one part of an artery but not "round the corner" so to speak.

    • linda17563
      linda17563 EileenH

      Posted

      I thought maybe that was the case.

      Your reply to Cindy about testing for GCA, how then is a definite diagnosis made, because not everyone has raised markers, or do they if it exists.........if my question makes sense......thank you.

    • EileenH
      EileenH linda17563

      Posted

      There is no definitive diagnosis - UNLESS you are "lucky" enough to have a positive TAB. That is 100% certainty. Otherwise - it is a clinical decision, made on the basis of clinical history, symptoms and response to pred. Though there are supposed experts who still fall into the "negative biopsy" trap.

  • Michdonn
    Michdonn cindy828

    Posted

    Very interesting Cindy, I had problems under 10 mg last spring my Rhumey wants me to think about adding another drug, I will be following your postings. Thanks :-)
  • christophe38948
    christophe38948 cindy828

    Posted

    Hi,

    Thank you for your information. I am presently on 2mg/day/month and I prying to be out of Pred. This medication created disaster in my body inside and outside. Never my doctor informed me that is possibility to decrease doses of Pred using any other medication.

    It takes me much time at the end of Pred to return to my previous med condition, of course, if the PMR does not return.

    Good Luck

    CW

  • susan29426
    susan29426 cindy828

    Posted

    Thanks, Cindy, I am also taking Actemra. For me, it's in the form of monthly infusions, and I have been able to lower prednisone from 13.5mg to 7.5mg after three months. I have been decreasing 2.5 mg after each infusion, but my rheumatologist had me stay at 7.5 after the last one since my white blood count was very low. She scheduled a follow-up blood test for two weeks, and will let me know after that. Prior to the Actemra, I was unable to get below 13.5 mg predmisone, even with the dead slow method. And my inflammation markers were very high. Immediately, the inflammation decreased to the lower ends of normal ranges. I still have pain which I consider significant - it hurts to get dressed, to reach for a seat belt, to brush my hair, pet the cat, etc. etc. - and my energy is nothing like it used to be. Neither pain nor exhaustion have gotten worse though. As I understand it, Actemra is only covered as treatment for GCA, not PMR. So sympathetic rheumatologists are giving the former diagnosis (wink wink).

    • EileenH
      EileenH susan29426

      Posted

      It is also covered for use in rheumatoid arthritis and I do know some people who have been reassigned as RA patients. They have had to "fail" methotrexate and another DMARD first. 

    • cindy828
      cindy828 susan29426

      Posted

      Susan,

      I live in the US and using the methotrexate was considered failed because of the fatigue and pain that I was experiencing while trying to taper.  I am pretty much pain free.  I have a little leg pain in the evening, but it's very manageable, and my energy level is high.  I can only sleep six hours a night instead of seven, but I do expect that to change as I decrease and my adrenal gland is challenged to wake up.

  • cindy828
    cindy828

    Posted

    Here's an update on my tapering experience on Actemra.  Though I reduced from 20 mg to 10 in three weeks, it's taken me 3 months to reduce from 10 mg to 6.  I travel a lot and when I do, I freeze my dose and don't try to reduce.

    At 7.5 mg I began experiencing flu-like symptoms around 3:00 pm that would increase until I went to sleep.  Sumatriptan eliminated the symptoms, but I didn't want to take it daily, so I increased my dosage to 8 mg and made an appointment with a rheumy. He told me that I was experiencing prednisone withdrawal and that I just had to deal with it for a few days and it would pass. He also suggested that I alternate taking my old dosage and my new dosage for a week and then take the new dosage for a week before tapering again. This worked well when I reduced from 8 mg to 7. Now I'm trying to reduce from 7 mg to 6. I experienced mild flu-like symptoms on the first day I dropped, but nothing like the drop from 8 mg to 7.5.

    The tapering seems to be taking forever, but if I didn't travel so much, I'd be further along.  The good thing is that I've have absolutely no PMR symptoms during my tapering process on Actemra. 

    • linda17563
      linda17563 cindy828

      Posted

      Brilliant news, so glad for you.....hope it continues. I have PMR, so not available in UK for that. I will attempt to lower from 10mg tomorrow......have felt fairly stable at this dose, and have stayed at that for 4months.......my biggest problem is very shortness of breath, which I am going back to doctor for, and will ask to be referred, it makes me so dizzy and drained. Also have 3weeks ago been diagnosed prediabetic......don't think the two are connected. This is why I would love something else to help.....after 6years

      Nice to hear your news.....good luck, keep us posted

    • Anhaga
      Anhaga cindy828

      Posted

      This is an older thread which won't be seen by everyone.  You have an interesting point to make and it would be great if you made a new post so people who get notifications about new posts see it.  This post will probably only be seen by those of us who followed the original post and new people are coming onto the forum all the time, a lot of them, nowadays, with questions about Actemra.  

    • cindy828
      cindy828 linda17563

      Posted

      Linda, thank you for the support.  I hope the shortness of breath is nothing serious.  Keep in touch.
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