Stopping Tocilizumab/Actemra injections

[Antschi]

I have been told by my Rheumy in a letter to my GP that I will not be prescribed any more Actemra injections once I have finished with my months supply. She also mentions that half of the patients who stop taking this medication will have a flare up. The medication is only prescribed for one year due to the high cost. Has anyone at Health Unlocked got any advice on this, I am naturally worried about the possibility of having a flare up once I stop the injections. I also take methotrexate 10mg per week and will continue with this until my Rheumy tells me otherwise. I am now down to 7mg Prednisolone and feeling well.

[SheffieldJane]

I know we are all different, but I found Tocilizumab helpful in getting swiftly down from 40 mgs to 10 mgs with little trouble. I then kind of stalled and had to taper slowly. I became aware that I was getting minor infections eg. nasal, urinary tract and the deal breaker, significant abdominal pain and diarrhoea. I decided to come off Tocilizumab just shy of one year. I didn’t notice any withdrawal symptoms and I didn’t have to increase my Pred dose. It has taken me a long time to get down to 4.5mgs of Pred. Possibly coincidentally, I now have diverticulitis. I think my Rheumatologist was prepared to argue for a few months more, had the drug suited me but the usual thing in the U.K. is a 12 month course based on the cost of the drug, rather than for therapeutic reasons. When I read about it, I am quite glad to be off it. There seems to be ongoing controversy surrounding the side effects for some unfortunate patients. I hope this is of some use to you.

[LemonZest11]

Hello Antschi, I am in Australia and here too, the allocation is for just 12 months. Reason here is not about cost, it is because no appropriate trials have gone beyond 12 months for patients with GCA, and so our govt will not place the drug on our subsidised drugs list (PBS). TCZ worked really well for me and so, as I was approaching the end of my allocation, I sought the support of my local MP to help me get an extension. No luck there. After an almost exhaustive search for support, it was suggested that I approach Roche directly. I did so and now, with the support of my rheumatologist (Roche won’t deal directly with patients), I have an open-ended supply. The downside is that you must pay for the first 2 scrips (4 x injection each), and the next 3 are given to you. I am through these now and so the process is beginning again. My rheumatologist is not very happy, she wanted me to try methotrexate, but since tocilizumab works so well for me, I remained resolute and she is supporting me. I am now off pred altogether, though still early days (18 weeks). This is how it went for me. I hope you can find the right path for you.

[Stills in reply to LemonZest11]

good post to read and well done on sorting out your meds via Roche. I could do with your help as I can’t even convince Dr to physically see me and only get telephone minutes 😄

[LemonZest11 in reply to Stills]

I don’t think I can be of much help from Australia Stills. I can’t understand why you cannot see a doctor, is yours a rheumatologist? It must work differently in the UK. Tele consults were a thing here during covid, but we’re all back to “normal” now, with regular face to face appointments. Can you jump up and down a bit to get an appointment?

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

If Stills could jump up and down, doctor would probably say no appointment required! 😳

[LemonZest11 in reply to DorsetLady]

🤣😂 I'd laugh, but it's not really funny!

[Stills in reply to DorsetLady]

exactly 🤣🤣

That gave me a good laugh thank you

[Stills in reply to LemonZest11]

I was jesting 😀 My surgery only offers telephone chats and it’s always an unknown locum hence no progress.

My last telephone chat resulted in the locum saying cancer had to be ruled out. Meds and tests ongoing and inconclusive so far but if he’d just listen about chronic AI conditions he’d consider organ involved from Stills first. It’s the waste of time and resources that irks me,

Thanks for your reply snd I’m wishing you good days.

[DorsetLady PMRGCAuk volunteer]

hi

You have had a couple of replies but if you had used Tocilizumab somewhere in the title of your post you would have seen more related posts…and it will help others if they are looking for similar information.

Your name will automatically come up at the end of your post.

You might like to have a look at this if you want post again -

healthunlocked.com/pmrgcauk...

Sorry can’t help on TCZ -wasn’t authorised when I had GCA -but still managed to get through my illness without any flares. It’s not a certainty you will flare -but you may have to reduce the Pred a bit more slowly with it. Good luck

[Mayadill in reply to DorsetLady]

This user name as title comes up it seems to me quite regularly. It should not be beyond the IT geniuses of HU to auto-stop it by recognizing it, rejecting it and putting something like. Please give your post an appropriate title, e.g. help with dosing. Actually they could put the whole thing, this would help other users, etc. After all they're happy enough to 'talk' to anyone who posts a pic. I might amuse myself mentioning it, but it's hot and airless - maybe laters!

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

To be perfectly honest, not sure HU are that interested [they have tips when raising post].

Whether there are issues on other forums I don’t know , but PMRGCAuk is only one of many forums [albeit a very busy one] which is why we/I have done various posts to remind people what to put on bio/profile, post titles etc, etc…...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

and   Fran_Benson does remind with her monthly welcome post….

But if new people haven’t read FAQs or read the Post tips -see photo - not a lot we can do, apart from comment when it happens.

Have attached picture below - for some reason won't let me attached to it to this reply ...

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

Picture

Post tips

[PMRpro Ambassador]

"The medication is only prescribed for one year due to the high cost"

Not entirely just cost and it is used in RA without limit so that isn't really a logical claim. NICE's argument is that no longterm studies on safety in GCA were submitted in the approval process - one could argue they had that evidence from its use over years in RA. There are representations ongoing to get it approved for longer term use in GCA,

And a plea - PLEASE do NOT use your user name as the title of your post - it is to give the members who don't read every post an indication of the topic to decide if they want to read it. It would also bring up Related Posts as soon as you post it which is helpful to you. If you were to use your user name for every post then they would all appear as related even though they are about totally different things.

[Exflex in reply to PMRpro]

I opened and read this post thinking it (Antschi) was a medical term I hadn’t heard of. Curiosity got me.

[Rugger]

I'm in England and was prescribed TCZ in March 2020. By good fortune, I was allowed 2 years of it, as they didn't want us to visit hospitals during the height of the pandemic, to be established on something else. I was on 10mg pred at the start of TCZ and tapered by 0.5mg a month reaching zero pred at the same time as the TCZ allocation ran out!

My Rheumatologist then started me on Methotrexate, as she didn't want to risk me being on no medication for the PMR & GCA-LVV. After 6 months, I relapsed, so it seems the MTX didn't do much for my inflammation. I've been back on pred for 6 months and am starting the slow taper again from 5mg, at 0.5mg/month.

I had no problems with TCZ and felt very well on it. It is a shame that we can't have it for longer - at the moment.....

PMR: 2016

GCA-LVV: 2019

[Sharitone in reply to Rugger]

did you ave any success in your representations to get it extended?

[Rugger in reply to Sharitone]

I wrote about the issue to Steve Barclay, Secretary of State for Health, but didn't even get an acknowledgement! I'm seeing my Rheumatologist in 2 months - I'll discuss it with her again.

[Sharitone in reply to Rugger]

How very rude. there's no point in writing anything to our MP either - too certain of getting a majority.🥴

[HeronNS]

You can edit the title of this post; as others have sugested it would be a good idea. Just look at the post you wrote and there is under it a row of options like Reply etc,, including a little downward arrow labelled More. If you click that you get the option to edit. You could call your post something like Tocilizumab coming to an end, or words to that effect.

[Chrisellie]

this was a reply I posted earlier but applies I hope.

Hello

I was on Actemra/Tocilizumab weekly injections for the maximum 12 months allowed for GCA in Scotland.My tapering is in my profile. I stopped after 12 months without tapering. No side effects and no returned symptoms. Was off Prednisolone months before that. No additional medication either during or after.Felt nervous at the time but no need. I was very lucky.Hope this helps and best of luck