Starting Actemra this week

[Darcy2000]

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.

[PMRpro Ambassador]

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.

academic.oup.com/rheumatolo...

jrheum.org/content/46/12/1552

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 in reply to PMRpro]

Wow Thanks so much for such an informative reply

Will now study it more closely and do more research

[misha453]

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 in reply to misha453]

Wow you made my Day

[Blackcatlover]

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.

[Darcy2000 in reply to Blackcatlover]

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

[Blackcatlover]

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

[Darcy2000]

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

[Blackcatlover]

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.

[enan-illuc]

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 in reply to enan-illuc]

Thanks so much for your update hope I am as lucky

[Krezan]

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.

[Rugger]

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.

[Jim-CJ]

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

[Linny3]

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.

[Jim-CJ]

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