Detroitsports

[Detroitsports]

thank you all for your response. It’s great knowing you are not alone dealing with this horrible condition. I saw my rheumatologist today, and he upped my Prednisone to 20MG, which helped during the day, but still not at night. I broke it up 15 in the morning and 5 before bed. The 5 did not even make a dent. Going to try 10-10 tomorrow. He also prescribed Tocilizumab to help the prednisone get my major flare up under control. Has anyone had any success or feedback regarding this drug? Thank you all again.

[DorsetLady PMRGCAuk volunteer]

As you only increased your dose today, then you probably do need to give it time to work…

You won’t get any answers re TCZ being used for PMR from UK, it’s only authorised for GCA use there. But there are others from US and other countries who will be along with their experiences.

Had you put the phrase Tocilizumab and PMR in the title of your post you may have pulled up related posts.

[Detroitsports in reply to DorsetLady]

Thank you DorsetLady. I do appreciate your feedback and recommendations. I am very new to this.

[DorsetLady PMRGCAuk volunteer in reply to Detroitsports]

no problem…. Hopefully you will get replies on TCZ… but you may need a few more days at 20mg Pred to notice an improvement…

PS -you are never alone -now you’ve found us 😊

[PMRpro Ambassador]

I have been on tocilizumab for PMR for the last nearly 3 years - it has allowed me to get from 19mg to 7mg but no further. This is because IL-6 is not the only underlying cause of inflammation in PMR and GCA but it is the only thing that tocilizumab works on, you may still need pred for the other underlying causes.

Don't expect it to work immediately - it can take up to a month or two to work fully but some doctors seem to think it is a magic wand as soon as it is injected! Are you getting the weekly injections or monthly infusions - infusions were never trialed or approved for GCA but the insurance cover will often only reimburse infusions which is crazy as they cost more because they must be administered in a clinic with those extra costs. Tocilizumab has never been trialed or approved for PMR - though it does work.

I can't say that I have any problems with it and it has certainly worked to allow me to get to the lowest level of pred for years - I've been on pred for PMR for 16 years and had PMR for over 20 years.

[Detroitsports in reply to PMRpro]

Thank you for your insight and sharing your experience. My doctor wants to start me out with bi-weekly injections that I will do at home. I have had PMR for almost 6-months now, and at this point it has completely ruined my life. So I pray that I can taper down from 20MG and enjoy much less pain with this drug. I am assuming with your current situation of 7 MG, your are living an almost normal life? And without too many severe side effects? Again, thank for sharing what you are going thru.

[PMRpro Ambassador in reply to Detroitsports]

Depends what you call a normal life I suppose - for most 72 year olds probably. The losses were in my 50s when it started but was never diagnosed so I had to cut back on physical activity then, I skied for some years but not as well as I had before. It wasn't just PMR that stopped that, injury and other considerations contributed but my cousins who I used to ski with still come annually to visit when skiing in our old haunts up the road from me.

Bear in mind that the tocilizumab, like pred, has no effect on the underlying autoimmune part of PMR. That continues in the background, attacking muscle and soft tissues, and maybe making you feel as if you have flu. All the pred and tocilizumab do is stop the inflammation developing and so the symptoms due to that. It still isn't a cure - just a much stronger management approach. Both PMR and pred compromise soft tissue and the fatigue component remains - that must be managed conventionally by resting and pacing.

[RunnerJoe]

I've been taking tocilizumab for 5 months combined with prednisone to treat GCA. The tocilizumab has helped me in reducing the dose of prednisone. I think the pred dose was about 50 mg / day when I started the tocilizumab, and now I'm at 12.5 mg, and dropping to 10 in another week. I take tocilizumab injections weekly. I haven't noticed any side effects from the tocilizumab, other than a big increase in cholesterol. My cholesterol was low when I was diagnosed with GCA in late June of this year, and now it is high enough that my primary care doctor is recommending I start taking a statin.

[Detroitsports in reply to RunnerJoe]

Thank you RunnerJoe. Very informative. I also heard this drug can raise liver enzymes. I’m sure there will be a lot of blood work done on-going. But it’s encouraging that it is helping to manage the pain while tapering prednisone. Thank you again.

[SHNOOKIEDOODLE]

I remember back in 2021 doing 30 mg for 2 weeks then 20 for 2 weeks then 10 for 2 and settled at 5. After that have been on a slow taper

[enan-illuc]

I Greetings Detroitsports,

I have been on Tocilizumab/Actemra since 2017 and have not had a problem. It helped me cut down on Prednisone and other pain killers. I have Giant Cell and PMR and I am in the US.

[Detroitsports in reply to enan-illuc]

Thank you for your reply. I am excited to start this drug; I know my rheumatologist is excited about it. Where are you located? I’m in the twin cities. Detroit transplant.

[RunnerJoe in reply to Detroitsports]

From what I've seen online it looks like the Mayo Clinic does a lot of research on PMR and GCA. I think you're near to them in Rochester? I live in RTP in North Carolina.

[PMRpro Ambassador in reply to RunnerJoe]

They used to be leaders - partly because Olmsted Co has a very high incidence of PMR in its Scandinavian heritage population. However, the leader there, Prof Matteson, retired a few years ago and I get the impression their focus has moved. Someone on the forum a few years ago didn't have too good an experience so I'm not sure how good they are now.

[Sandmason in reply to PMRpro]

Good point. I have another rare condition and get frustrated when new people with this think they can go to any big name medical system for treatment. No, it's entirely dependent on a few special doctors (like just 3 in the US) with the talent, skill and experience to be successful. We have certainly heard terrible stories of ignorant rheumatologists.!

[PMRpro Ambassador in reply to Sandmason]

In the UK, one of the PMR greats was at Bristol and under him, it was worth going to. After he retired the focus changed and now they are average. His student Vanessa Quick went in the GCA direction which really is a whole diffeent world. She works closely with Sarah Mackie in Leeds - the UK PMR guru. But she is good because she THINKS - and outside the box with a bit of prodding from patients ...

[RunnerJoe in reply to PMRpro]

I was less interested in treatment rather than the opportunity to participate in research on PMR and GCA. It would be nice if something good could come from experiencing these diseases.

[PMRpro Ambassador in reply to RunnerJoe]

Those opportunities tend to be few and far between - mainly because once you are on pred it tends to rule you out of some studies as they are often for steroid-naive patients. Funding is difficult too - not the impact of illnesses that babies develop or cancers that everyone has heard of. But there are often opportunites for surveys shared on here which look at diagnosis, management experiences and how patients perceive that.

And the really bad news? The impression I have gathered over the last 16 years is that US rheumies are very set in their ways and and dismissive of PMR. The most dynamic ones are here in Europe - as much as anything because it is a disorder which Caucasians with Scandinavia genes tend to get. Asian and African genes are not central and the incidence is very low in them.

[RunnerJoe in reply to PMRpro]

I can't complain about the treatment I have received from my rheumatologist. He accepted me on an urgent basis 4 days after I was diagnosed with GCA. Also he wanted to get me started on Actemra as soon as possible. Things might be different for patients with PMR.

[Detroitsports in reply to RunnerJoe]

Yes, I am close to the Mayo Clinic. But at this time I am seeing a rheumatologist from our suburb of St. Paul. This is my second one, I moved in from my first one. The Mayo will be my next stop if I feel I am not receiving good care. I will tell you I am doing extremely better these past 3 days and two nights, so I am happy that I have a chance to resetq my taper schedule and do it much slower this time. I will also report back how the tocilizumab works for me. I start it in Jan. 10th.

[Sandmason in reply to Detroitsports]

Here in Western Colorado, few rheumatologists will accept referrals of people on Medicare and if they do, the wait list is almost a year. I found one brand new one, he refused to treat me. He did tell me I should have gone to an Internist instead. My husband is an Internist, the guy was miffed that I was already on steroids, 8 months into severe symptoms! Apparently that's his only diagnostic tool.