What happens when you end tocilizumab

[Caroline2079]

I have GCA and PMR , plus a few other conditions..

I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs.

The tocilizumab has done wonders with unreadably low CRP and ESR of 3-4. Brilliant but not without hitting the bone marrow with low counts and therefore asked “ to shield “.

However , my super GP has warned me that the immune system may not reset and the flares may all return .

What are the results on tocilizumab giving a lasting cure. It would be such a shame to have gone through all this for it to all return. No PMR.No headaches for now. How nice.

[PMRpro Ambassador]

The ESR and CRP readings are meaningless in monitoring the PMR/GCA activity - no point spending money on those tests because the way tocilizumab works means they are normal: it stops the production of IL-6 which is what causes the inflammation and so there is nothing to trigger production of CRP which also is part of the increase in ESR.

Tocilizumab is also not a cure for PMR/GCA. It gets only half of patients with GCA off pred altogether - the other half have inflammation caused by a couple of other mechanisms which needs pred to manage. The hope is that being on TCZ long enough triggers a reset of the immune system and the production of IL-6 is stopped. The longer term studies seem to have found that just under half of patients who get off pred altogether in 1 year of TCZ remain in remission over the following 2 years - which of course means slightly over half start to flare once the TCZ is discontinued. So it depends a lot on your healthcare system's rules about use of TCZ.

thelancet.com/journals/lanr...

ard.bmj.com/content/78/Supp...

[SheffieldJane]

At the very least it has reduced your overall steroid burden for a year or so. Let’s hope you stay in remission. I have had to stop Tocilizumab because of repeated infections and finally diverticulitis symptoms. I have noticed symptoms of PMR creeping back, after about 4 weeks which was exactly the period of time it took my intestinal pain to settle - by far the worst symptom so far. This is unlucky because my GCA/LVV was giving me very few symptoms before Tocilizumab was prescribed. It does feel as if my symptoms were held back and have returned more severely. This could be because I was diagnosed very early. I have found it really difficult to interpret my symptoms lately. I will finally see my Rheumatologist in a couple of weeks. I expected Methotrexate will be offered again. Unfortunately Tocilizumab was not the miracle drug I had hoped so much for.

[Longtimer in reply to SheffieldJane]

I hope you find some answers...what a minefield this all is...

[PMRpro Ambassador in reply to SheffieldJane]

Chetan Mukhtyar from the N&N has just commented in his GCA lecture that it is not a benign drug - said much the same as I was saying a few years ago and was criticised for!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Noticed that!

[PMRpro Ambassador in reply to DorsetLady]

Wasn't it a superb effort? Still far from convinced about his 100 weeks - but in fairness, he does have some numbers!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, unfortunately did miss about 10mins - but will catch up on recording, but generally good...but like you not convinced on timings....probably need a country-wide view to give a truer picture. But we know that's unlikely to happen..

[PMRpro Ambassador in reply to DorsetLady]

Were you there by the time he was talking about Vikings and the high rate in East Anglia? Maybe it is also a slightly different version?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, it was the 10min or so just before that I missed.....that I hadn't better make a comment on subject

🙄

[SheffieldJane in reply to DorsetLady]

👑 your highness!

[Caroline2079 in reply to DorsetLady]

Please how can I see a recording of this talk.So tocilizumab is not the miracle cure, after all.

Because I have been so difficult to treat , I am starting to realise, and the doctors are saying that the GCAand PMR of the complexity I have is incurable but containable. Loss of sight one eye and stenosed both the internal carotid arteries in another flare up.Stenosis seen on MRI.

I am blessed with super doctors which makes me feel so fortunate.

Incredible forum.

Thank you all of you.

The combined knowledge base is phenomenal

[DorsetLady PMRGCAuk volunteer in reply to Caroline2079]

If you look at top of page just under PMRGCA logo you see Members, tap that, then you should see Moderation Team. ..Select CandyH (lady who's been organising them). Tap her name, it will take you to her profile - then you can message her and request copy.. she'll need you email address, so make it you are in messages and not on open forum.

[Caroline2079 in reply to DorsetLady]

Thank you for your advice about contacting Cindy.I did what you suggested and had a very nice response from her and should be able to hear or have transcript of talk.

Many thanks

[DorsetLady PMRGCAuk volunteer in reply to Caroline2079]

Good..

[SheffieldJane in reply to Caroline2079]

It might be for you Caroline! Keep the faith. No guarantees for any of us.

[winfong]

Had to stop TCZ because of diverticulitis. Have been doing well so far on leflunomide

[Chrisellie]

I was on a 12 month, weekly injection of Tocilizumab along with a pred reduction which started on 40 mg and stopped many months before the injections stopped. I have been off everything for over 2 years now and all has been well. I am one of the lucky ones and all shown in my profile.

Hope this works for you as well.

[Caroline2079 in reply to Chrisellie]

Thank you for your encouraging email.Much appreciated.It is so nice to see some good news.

[Caroline2079]

Thank you for your long and detailed reported.I found it very helpful and informative.

Thank you for taking the time to write at length