Vasculitis/Tocilizumab

[Daniella7]

I have posted before regarding the fact that after a year on steroids and having many side effects I was told to reduce them by 1mg a month. My rheumatologist did not think I had PMR (diagnosed originally by GP). After 6 months of increasing pain and stiffness and down to 2mg I was able to have a PET scan. Today I was informed I have Vasculitis in my major arteries and need to take 40mg of prednisolone from tomorrow morning! Because of my problems with prednisolone I will be having to inject myself with tocilizumab when it has been approved and delivered to help me to reduce the steroid more quickly. I would be interested to know of others experience on this drug. The fact that I have had major pain in my neck (but not bi-lateral) since the beginning of my PMR diagnosis makes me wonder if this is a possible symptom of Vasculitis? My rheumatologist felt my neck pain was muscoskeletal but a physio disagreed. At least I do know now what is wrong. I think people thought I was imagining my symptoms!

[SheffieldJane]

I have large vessel Vasculitis known as extra cranial GCA. I was put on 40 mgs of Pred which, to put it mildly, was disappointing. I was on 3 mgs of Pred and thought my PMR journey was ending. I was authorised to have Tocilizumab / Actemra to inject myself every week. My husband did it for me after my tentative effort ended up squirting all over my bedroom. It is a simple process and I think my husband enjoyed helping me out.This drug enabled me to reduce to 10 mgs Pred within a matter of weeks. The only side effects I noted was a tendency to get infections such as Blepharitis, UTIs, and nasal infections. An effect of having my immunity well and truly suppressed I suppose. I also began to experience significant abdominal pain which turned out to be Diverticulitis. I stopped Tocilizumab after a year due to the abdominal and bowel symptoms but managed to stay on 10 mgs of Pred I have reduced to 5 mgs ( much slower without Toc) and seem to be stuck there at present. I am grateful for the benefits I got from the drug and would do the same thing again. My Vasculitis symptoms were quite vague. I am glad my Rheumatologist left no stone unturned. I have a minor issue in my Aorta but apart from that my Vasculitis was spotted in an ultrasound scan ( vascular) in my left armpit. My MRI did not show any more. I do however feel sick and tired with abdominal pain and IBS type symptoms.. so I am not out of the woods yet. PMR suffers often have undiagnosed Vasculitis and enlightened doctors will test for it. It can cause issues if it goes undiagnosed and therefore untreated. So I am glad it was spotted. Many people get on better with Tocilizumab that I did. It is the way forward I believe. I wish you the very best of luck going forward.

[Daniella7 in reply to SheffieldJane]

Thanks for your reply. I was down to 2mg and hoping to be off pred by Christmas but I was in terrible pain when lying down and so stiff that I was sure the rheumy had been wrong when she thought I didn’t have PMR! I’ve since noted that tingling and numbness in toes can be a symptom of Vasculitis and I was referred to a rheumatologist by my Dr because I was complaining of it! My rheumy said no and here I am 8 months later! My own Dr seemed to know better than her. Thanks for your encouraging comments about treatment.

[LemonZest11]

Hi Daniella, I have LVV and have been injecting Actemra for over 3 years now. I have been off pred for over 40 weeks and feeling good. The only side-effect for me is low white cell count after each injection but this returns to normal after a couple of weeks. I inject 4 weekly.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you have LVV, others have replied re TCZ - and you can also see related posts about the drug but you might like to read this about your illness-

healthunlocked.com/pmrgcauk...

Your neck issue might have been LVV. If it disappears with the Pred you may well have your answer.

[PMRpro Ambassador]

I "only" have PMR but almost certainly was more in the direction of LVV/GCA originally though never investigated and I have been on pred for over 14 years. My rheumy here in Italy put me on tocilizumab about 18 months ago and I have had absolutely no discernable problems with it. In the meantime I have been able to taper from nearly 20mg pred and increasing to about 6mg without any problems. That seems to be my limit because of adrenal function considerations. I do have severe low back pain which is not thought to be directly due to PMR but difficult to manage on the two painkillers I am allowed to use because of other problems - but I have just discovered that a bit more pred makes a massive difference. That will be a topic of discussion when I see my rheumy in the first week of the new year!

[Daniella7 in reply to PMRpro]

You’ve had a long journey with PMR. Hope you do get better soon. I’ve only been having problems for just under 2 years. Anyway, sounds like the tocilizumab should work ok. Fingers crossed. Thanks for replying. X

[WaltzG]

I'm on Actemra injections and so far no trouble with it at all. Good luck

[Daniella7 in reply to WaltzG]

Thanks. X

[Rugger]

I was diagnosed with PMR in 2016, followed by GCA-LVV in my aorta and its branches in 2019. I had Tocilizumab and felt very well on it. I had no problems - other than an occasional dip in my white cell count, but you will have regular blood tests to monitor that. Missing a week of TCZ brought the levels up again. I found the injections no problem at all and did them myself, rotating them around my abdomen in a clock face fashion, to avoid using the same spot all the time! The pens are pre-filled and 'automatic'!

TCZ enabled me to reach zero pred. However, at the moment, TCZ is rationed to 52 weeks' treatment in the UK. 6 months after stopping the TCZ, my PMR symptoms resurfaced, so my Rheumatologist put me on 5mg pred for 5 months after which I started the DSNS taper again - currently on 2 / 1.5mg.

If I ever needed it again, I wouldn't hesitate, but you will have to try it and see for yourself. All the best.

[Daniella7 in reply to Rugger]

Thanks for your reply, The injections sound promising. No doubt I’ll post about my progress.

[Sharitone]

I have had TCZ weekly injections for 23 moths, for PMR,GCA,LVV. The only problem had been occasional neutropaenia, which has meant missing a few weeks' injections. Of course, your immune system is compromised.

On the plus side, I have got down to a much lower dose of pred.

[scottygirl73]

I get infusion of Actemra every 4 weeks,had couple of little hiccups at start but have been fine ever since.Good luck.xx

[Daniella7 in reply to scottygirl73]

Thanks. Again the injections sound promising.

[ncfaaeos]

Oh, I feel for you. I have been in exactly the same position and I too am now on 40 mg Pred a day for 4 weeks before starting with the Tocilizumab / Actemra. Thus, I personally, do not have any experience with it but it will be interesting to see how we fare. I saw my rheumatologist who said that most people have no problems with the drug and that it helps stave off relapses. Fingers crossed!

[Daniella7 in reply to ncfaaeos]

We will both have to see how we get on then. There’s been some positive feedback at least.

[PMRpro Ambassador in reply to ncfaaeos]

"... it helps stave off relapses"

Only if you keep taking it ...

[ncfaaeos in reply to PMRpro]

I didn't realize that (I haven't begun to take it yet - probably start next week).