Starting Actemra this week: I have both PMR and GCA... - PMRGCAuk


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Starting Actemra this week

Darcy2000 profile image

I have both PMR and GCA . I was

Wondering Actemra can also help the PMR. I am currently on 15 mg of Prednisone for the PMR.

19 Replies
PMRpro profile image

You don't really have two different disorders - they are the same disease but are at different places on a spectrum, depending on which bits are affected. GCA is obviously due to giant cells forming in the walls of the blood vessels. They aren't sure about the mechanism for PMR but somehow it leads to soft-tissue inflammation though they don't know how.

The Actemra/tocilizumab will probably help the PMR too - but it only fully deals with GCA in half of patients, the ones whose GCA is due to inflammation caused by the IL-6 cytokine. There are another 2 mechanisms that have been identified and if they are involved the tocilizumab doesn't work on them. It is possible the same applies to PMR. Time will tell.

Darcy2000 profile image
Darcy2000 in reply to PMRpro

Wow Thanks so much for such an informative reply

Will now study it more closely and do more research

I have been taking Actemra for 11 months now. The Actemra has helped my PMR as well as the GCA. I am now down to 1 mg of Prednisone which is the lowest I have been in over 4 years! I hope it works as well for you.

Darcy2000 profile image
Darcy2000 in reply to misha453

Wow you made my Day

I have had many problems reducing prednisone since PMR was diagnosed 12 years ago. My maintenance dose was roughly 10 mg but that has only been in recent years. My usual dose was anywhere between 20-40 mg.

Actemra helped me but your results my vary. When Actemra was started, I was initially able to taper from 10 mg to 0 mg in less than 6 months. I did have a problem and went back to 60 mg of pred. That problem had nothing to do with PMR or Actemra and I have since tapered back down to 0 mg ---the past 18 months have been an eye opening experience.

Blackcatlover profile image
Blackcatlover in reply to

Oh you give me hope! Do you have a plan for tapering your Actemra?

in reply to Blackcatlover

At first, I was started on injections every 2 weeks. That worked well and I tapered from 10 mg to 3 mg quickly. I was told to stay at 3 mg for about 3 months to allow some adrenal recovery and to have an endocrine consult. The endocrinologist gave me clearance to go from 3 mg to 0 mg which turned out good but was very frightening. I already know that injections every 2 weeks works well.

The problem that arose was some serious eye inflammation called uveitis. My ophthalmologist was skeptical that Actemra would work for uveitis and I was placed on a different biologic for 3 months. That didn't work out because after awhile, the pain and stiffness returned. The compromise between my rheumatologist and ophthalmologist was that Actemra would be increased to weekly injections with fingers crossed. I agreed with that plan.

My last rheumatology visit was over the internet and my rheumatologist was reluctant to start tapering the Actemra. She only said to stay on weekly injections for 6 more months which will be in December.

Darcy2000 profile image
Darcy2000 in reply to

Thanks for that .. hoping no serious side effects Prednisone was no problem of course except for the my latest bone density scan

Blackcatlover profile image
Blackcatlover in reply to

My doctor also doesn’t want to discuss tapering the Actemra when I’m still on pred. Doing the DSNS tapering method so it will be a while trying to get to zero. I’m comfortable staying on a low dose Prednisone. Just hope I can stop the Actemra. Be well. Good luck with your eye problems. I think anything having to do with your eyes are the scariest of all.

I have been struggling with PMR for just under four years. Was initially put on 40mg of Prednisone and felt wonderful. I could never get below 15 mg of Prednisone without a flare. My Rheumatologist added Methotrexate and the next six months were horrible. It never helped me reduce my Prednisone, just made me very sick. I’ve been given Actemra by IV for the last 18 months. I’m down to 4.5mg of Prednisone and have had only one flare because I reduced my pred too quickly and tried to go six weeks between IVs. Next week I drop to 4mg of Prednisone and I think it will work. Hope Actemra helps you as much as it has me. Good luck.

Thanks for your encouraging words and hope Actemra keeps doing its job

Hi Darcy2000,

I also have PMR and GCA and take Actemra/Tocilizumab. The Actemra did help both in my case. I had been stuck in my tapering at about 23 mg of Prednisone and am at 1.5 mg now. I will be at 1.5 mg for a long time. At a low dose I do not have any side effects from the Prednisone. Good luck, I hope this helps.

Darcy2000 profile image
Darcy2000 in reply to enan-illuc

Thanks so much for your update hope I am as lucky

I was diagnosed in December to GCA after I lost the sight in my right eye, I was in hospital for a week on intravenous prednisone and came home on 60mg, I had an awful time as I also have ulcers finally got Actemra in May, and I am off prednisone completely but I also use a Far Infrared Facial panel as it takes down inflammation I am sure this has helped I use it every day. I have no symptoms of GCA.

I have had PMR for 4+ years and GCA-LVV for about a year. I started weekly injections of tocilizumab 20 weeks ago and feel better than I have done since the initial PMR diagnosis.

I've felt so well that I have been 'digging for victory over CV-19' and fell in the garden 5 weeks ago, fracturing my arm! So just be careful, if it gives you a new lease of life!

I'm tapering my pred by 1mg every month and am now on 4mg.

Hi Darcy,

My wife has been on Actemra for 2 1/2 years. It has allowed her to reduce Prednisone to 4 mgs, which she has been at for almost 1 year. She has not had any flares and no PMR pains, but recently her white blood cell count is too low. Her Rheumy has lowered her dosage from weekly to every 10 days to see if that helps. That is the only side affect thus far. Her doctors have not put a plan in place to reduce her Prednisone thus far.

Hope This Helps,

Jim & CJ

in reply to Jim-CJ

I'm just curious about why she is on 4 mg for almost a year with no flares and no PMR pains. What prevents your wife from tapering off of prednisone?

I was told to stay at a low dose of prednisone too but it was more of a recommendation. My rheumatologist said at the very beginning that even if I could only get to 3 mg, they would consider that a success. However, my understanding was that the overall goal of Actemra was to get me completely off prednisone. In that respect, Actemra was a complete success for me. When I told my rheumatologist that I wanted to taper completely off prednisone, they didn't have any objections and were pleased but did request an endocrine consult first.

I am somewhat worried that my rheumatologist doesn't seem to have any plan for how long I will take Actemra. I think she is somewhat reluctant to rock the boat too much. I did ask about extending the time between injections but the only response was to wait six more months. That will be 2 years total but it was interrupted for about 6 months.

I have heard of potentially bad side effects of Actemra ... low white blood cell count is one of them. My count is always on the low side long before Actemra and it hasn't changed significantly.

Jim-CJ profile image
Jim-CJ in reply to

Hi DadCue,

We are waiting to get in to see her Endro Doc, which she will probably say go to 3mgs. But right now, things are pretty darn good for her!

Hope This Helps,

Jim & CJ

I am starting Actemra today. Good luck and keep us posted how you are doing. I find it very scary to take, but am willing to give it a try. Have been diagnosed with pmr for almost 4 years and can't get below 14 without a flare. Now on 15mg trying to recover from bursitis.

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