Some advice please ...

[LemonZest11]

Once again I’m not sure what is going on. I’m still on the tocilizumab journey but only having it fortnightly due to low white cell count. This hasn’t seemed to impact on my tapering over the past few months. It has taken me 8 weeks to get from 5mgs to 4mgs, alternating 4.5 along the way. I have had an injured shoulder into which I had a cortisone needle into the joint under ultrasound around 8 weeks ago and I have been having physio on it since then. Problem is that I have started experiencing soreness in my upper arms, only during certain movements. I wasn’t sure if it was the physio or the start of a flare. Two days ago I upped the pred to 5mgs, the last dose I felt really good on. Nothing has changed. Should I continue on 5mgs to see if anything improves? I have blood tests tomorrow in prep for my Rheumatologist appt on Monday.

[Rugger]

I am on a similar Tocilizumab journey and have been steadily tapering the pred by 1mg a month. Last week, I was due to stop pred altogether, having been on 1mg for the last month.

However, at my review with the Rheumatologist, I told her that I have become more tired and had slight aches and pains over the last 3 months on the low pred doses. She has advised me to go back up to 5mg (or a bit more) for the next 2 months, then review the situation!

It seems the PMR that I've had for almost 5 years may be flaring yet again. I just hope the weekly TCZ is keeping the GCA-LVV under control!

Two days on 5mg may not be long enough to tell if it's enough. See what your Rheumatologist says on Monday.

Take care.

[LemonZest11 in reply to Rugger]

Thanks, and what a pain in the backside for you! All that work. I am not feeling anything suspicious in my hips/legs, which has been my flare location in the past. I do fear though, that this arm thing is the beginning of something bad rather than the physio exercises. I guess I’ll continue to take 5mgs until I see doc on Monday. Funny thing is though, a couple of panadol eases (not takes away) the pain.

[PMRpro Ambassador]

In the clinical trial they did weekly and two-weekly tcz arms and the difference in results was very small. Only approx. 50% of patients were able to get off pred altogether, the rest needed a much lower dose but couldn't reduce to zero. This is probably because there are 3 possible mechanisms for the GCA inflammation and tcz only works on one, the IL-6. If either of the others are involved they still need the pred sledgehammer to keep them under control.

What blood tests do they do? The ESR and CRP are meaningless when on tcz, because of the way it works. They may be low but the disease process can still be chugging away having its effect on the tissues.

[LemonZest11 in reply to PMRpro]

Yes, thanks, you directed me to the paper that outlines this. I have it to show my doctor. Just wondering though, given that the advice is to return to the dose that last relieved the pain symptoms, ie 5mgs, how long should it take for me to know if I need to go higher?

[PMRpro Ambassador in reply to LemonZest11]

I suppose it is possible that a bit of inflammation has built up so either you need a bit longer or a short time with a bit more pred to clear it out and then return to the 5mg.

[LemonZest11 in reply to PMRpro]

Thanks PMRpro, I feel slightly better this morning but I def think it's a flare so will take your advice.

[LemonZest11 in reply to LemonZest11]

I have just bitten the bullet and upped the pred to 7.5mgs. See how that goes. 🤞. Once I feel "normal", should I return straight back to 5 for maybe ever, lol

[PMRpro Ambassador in reply to LemonZest11]

If it doesn't help in the first few days you can go back to 5mg and try patience! Nothing is written in stone ...

[Suzita76 in reply to PMRpro]

I think I must be one of the lucky (?) ones whose LVV-GCA was (probably) caused by too much Interleukin-6…. Tocilizumab has enabled me to come off Prednisolone (as well as Omeprazole) completely, and my only medication since March 2020, a weekly self-injection of Tocilizumab (Ro-Actemra), has given me my life back.

I do know, reading what terrible pain and suffering so many people go through, that I am fortunate. On the other hand, my complete lack of symptoms, apart from the raised CRP and ESR before I started on Toc. means I have no idea if my arteries are still being attacked. I just know I now feel 20 years younger than my 71 years.

Having sent copies of the N.H.S. Rapid response document I mentioned in a previous post to both my GP and consultant, the latter finally wrote to me in late October to say that my Tocilizumab would be extended until April, but thereafter, it would probably almost certainly have to stop “because of NICE guidelines”.

Sometime in 2021, NICE is supposed to be revisiting their decision recommending that (only some) GCA patients be provided with just 1 year of Tocilizumab. Having read the basis of their original recommendations, I must say I find their reasoning callous in the extreme, comparing the possible financial cost to the N.H.S. of Tocilizumab with the cost of treating/ hospitalising people with broken bones and diabetes caused by taking Prednisolone. (Of course they do not consider possible mental institution in-patient costs due to psychosis, triggered in some patients, like me, by high doses of Prednisolone).

It would be really useful if the different interleukin levels in different patients could be measured (-it seems there are already cheap blood tests available to measure some of the many interleukins, including IL-6 and IL-1) so that GCA sufferers with high levels of IL-6 could be specifically targeted with Tocilizumab therapy.

I know I have talked before about the fact that Rheumatoid Arthritis patients can be treated with Tocilizumab for as long as their specialist deems necessary, so I do not see why this should not also be the rule for GCA patients for whom Tocilizumab has been shown to work. R.A. is clearly a complex disorder, and many different therapies need to be tried and tailored to individual sufferers. This also seems to be the case with GCA/ L.V.V and PMR. (According to the N.H.S., RA affects one in a hundred people in the UK, and the number of new cases diagnosed each year is about 1 in 2,000, compared with GCA incidence of 1 in 5,000 diagnosed annually).

[PMRpro Ambassador in reply to Suzita76]

Couldn't agree more ...

[tangocharlie in reply to Suzita76]

Hear hear, it's so unfair that you can get TCZ for PMR in America but not here, only GCA and LVV and then it's a postocode lottery depending if you're on a trial etc. PMRGCAuk needs to take up this fight. I'm hopeful things will improve, the price of TCZ should come down as it is being used for Covid, but progress is too slow for us PMRers.

[PMRpro Ambassador in reply to tangocharlie]

It is more that in the UK you can have a biologic for RA and other inflammatory arthritides - and as I understand it without begging and without limit. But not for GCA. THAT is unacceptable

[tangocharlie in reply to PMRpro]

I see yes, we should definitely be doing something about this as a patient body.

[DAW28 in reply to tangocharlie]

Agreed!

[tangocharlie in reply to PMRpro]

Speaking to SM today she said we can't have TCZ for PMR because it is not licensed and there isn't enough evidence it works for PMR

[LemonZest11]

Thanks DadCue, that information is really helpful. I had been travelling really well, apart from unrelated shoulder problems but suddenly I have hit a wall. Will hold at 5mgs until I see rhuematologist next week. Good on you for great progress and all the best with kidneys and corneas. As you say, there is always something.

[LemonZest11]

In Australia it has to go to the Health Department and Medicare for approval. I have it for GCA/LVV but it hasn't prevented my current flare of PMR.