should TCZ be tapered at end of supply?

[Jonimoroni]

hello friends - I had what is probably my final delivery of TCZ injections this week. I have 10 in stock now. - so 10 weeks supply left. I’m wondering if I should taper them - by adding days between injections- over this final dosage. I’m on 4mg Pred, DSNS taper to 3.75. ( I had a flare in June after following rheumys instructions to taper to zero dropping 1 mg per week - it was far too fast.

Does anyone have experience of what happens when TCZ is stopped, or of tapering TCZ by increasing intervals? No help from rheumy - he “ expected me to be off the steroids by now” and when asked about TCZ said “we’ll see what happens “ .. and was sniffy about my GP’s letting me have the Pred I asked for. ( tel consultations only now ) - so I’m rather inclined to manage this myself - with advice!

thanks as ever

[PMRpro Ambassador]

Is he not aware that only half of patients get off pred altogether on TCZ? The other half require pred at a much lower dose but still need some. Or that at this stage he cannot ask you to reduce pred at 1mg per week without putting you at risk of adrenal insufficiency problems? The body's own production of corticosteroid in the form of cortisol takes months not weeks to return.

In the clinical trials there were 2 groups on pred, one with TCZ injections every week and the other with injections every 2 weeks. The differences in results weren't enormous although weekly was better.

LemonZest11 stretched the interval between injection from 1 to 3 weeks which worked, 4 weeks didn't if I remember rightly.

[Jonimoroni in reply to PMRpro]

brilliant, ( your memory for posts and members is astounding!)- thank you for that. I’ll work out a plan for a slow taper on the TCZ, stretch it as much as I can as I’m convinced it helps considerably,

Very best to you!

[LemonZest11 in reply to PMRpro]

Correct. At that point of stretching to 4 weeks I was down to 0.5 mgs pred, so unsure of which was insufficient. Back to 3 weekly tcz and currently on 1mg pred and all going ok. I'd say give it a go at 2 weekly for starters.

[Rugger]

With my Consultant's agreement, I stretched out the last of my TCZ supply at 2 weekly intervals, which bought some time. By coincidence, I reached zero pred at the time the TCZ ran out. I hoped I might be in remission from the PMR and GCA, but my Consultant started me on Methotrexate, fearing that if I flared, I would need higher doses of pred.

So here I am, 4 months into Methotrexate and we're going to review the situation after a year on MTX. At least blood tests will show CRP levels, which we couldn't monitor on TCZ.

If you take your last doses over 20 weeks, you could end up in a similar position to me.....

PMRpro is correct - it is LemonZest11 who stretched out her injections quite considerably.

All the best.

[Jonimoroni in reply to Rugger]

Thanks Rugger! Think I will try stretching the TCZ - but it feels like falling off a cliff and hoping to fly!

These replies are like finding g out about parachute for the first time!

Best!

[DorsetLady PMRGCAuk volunteer in reply to Jonimoroni]

Always best to ensure you know enough about the parachute before you jump off the cliff 🪂. 🧗‍♀️imho….😳

[Jonimoroni in reply to DorsetLady]

🙀Absolutely, Lady D !! Always good advice here !!

Best!!

[DorsetLady PMRGCAuk volunteer in reply to Jonimoroni]

Of course…even if it is bleeding obvious (as late hubby would say! 🤣😂

[tangocharlie in reply to Rugger]

How are you getting on with the mtx? I couldn't cope with the side effects and have had to abandon it

[Rugger in reply to tangocharlie]

So far, so good, although I don't feel as well as I did on TCZ and pred! However, I am 6 years older than when first diagnosed, so 'date-of-birth' and 6 years of these conditions and pred itself may explain that! I feel fortunate that I haven't had the side-effects that you and others experienced on MTX. I'm sorry that you're not having it as easy.

[tangocharlie in reply to Rugger]

I just wish I could try TCZ. Wonder if it's worth putting on my letter to Santa?

[PMRpro Ambassador in reply to tangocharlie]

There is potentially a trial for another drug for long term PMR though lord knows when it might get into the pipeline.

[Sharitone in reply to tangocharlie]

I think that after 10 years on pred, and with recalcitrant disease, you should qualify for TCZ. You're worth it! Is there any point in writing to your MP?

[tangocharlie in reply to Sharitone]

That has crossed my mind. I think the likes of Dr Mackie and others are doing all they can to make progress, but I'll ask her what else I ould do some time. I really think the charity should put its weight behind it too, we deserve and need better treatment. Yes TCZ is expensive, but I have lost so so much money through not being able to work that it would be cost effective if it got me back to be able to work again

[Siena62]

Some rheumatologists seem to be effectively blaming their patients for not getting off the Prednisolone. They are over-confident about their tapering regimes and seem surprised and even irritated when flares occur but go on nagging their patients about stopping the Prednisolone altogether. Their priority is to get their patients off the Prednisolone. Sometimes you wonder if they have forgotten that their patients actually have a debilitating disease which they are supposed to be treating!

[Jonimoroni in reply to Siena62]

absolutely!! But they ( rheumatologist’s) remain the gateway to treatment -they are the hurdle that this forum helps us so much to surmount. I know some are enlightened - mine seemed pretty good at the start - but since my recentflare he seems to have changed! Almost taking it personally! I suppose there might be some pressure on him to justify the expense of prescribing TCZ, and a flare half-way through and my Pred re-set - might be frustrating for him if he has to report to hospital admins… but if that’s so, I shouldn’t have to be the object of his frustration! Dreadful manners, at the least - maybe downright arrogance, no? But it seems widespread.

Sorry. Starting to rant.

Thanks for reply, and

Best!

[LemonZest11 in reply to Jonimoroni]

My Rheumatologist was frustrated by my slow taper while on tcz, but I stuck to my guns. My tcz injections are 3 weekly due to neutropenia but it's still working for me. Keep your taper slow and see how you go with 2 weekly injections. You can only try.🤞

[PMRpro Ambassador in reply to LemonZest11]

I wonder if she learned from that?

[LemonZest11 in reply to PMRpro]

Haha, I doubt it. While I do have quite a lot of respect for her, she was great at the start, I have found that she is quite annoyed with me for taking matters into my own hands. She hates it when I refer to this group, for example how I learned the value of taking my pred dose around 2am, and other such valuable help I have received from here. In fact, everything I have learnt I learnt from you and the others, not from her! Just recently she ordered me to have blood tests before my injection and just after, in order to keep a record of how my neutrophils respond and recover. For Pete’s sake, we’ve been monitoring it for months!!! AND, she insisted that I had a recent infection that put me into hospital!! No such thing occurred and it required quite a bit of insisting from me to convince her. She’s peed off that I was able to secure subsidised tcz, when she wanted me on methotrexate. You know the story, anyway, suffice to say, I don’t think she has learnt anything. But, as I said, she has been helpful in other ways.

[PMRpro Ambassador in reply to LemonZest11]

Obviously insecure! But wouldn't it be nice if people didn't have to fight the doctor as well as the disorder? SHE wouldn't have put the legwork in to get your TCZ, she hasn' time probably even if she had the inclination, so why be so mealy mouthed?

[LemonZest11 in reply to PMRpro]

Well you said it, insecure or perhaps threatened because I challenged the idea of metho. I reminded her that it was she who prescribed TCZ, she believed in it. In the end, when Roche needed her input to approve the subsidy, she came to the party. Not to worry, onwards. I hope you are travelling OK, I’d love to be in Italy right now!! In fact, we’re having pasta tonight, slow cooked lamb ragout with spaghetti. Don’t worry, not too much spag for me!!

[PMRpro Ambassador in reply to LemonZest11]

Oooooh - now that would be nice. Suddenly autumn here, time for ragu and pasta ...

[LemonZest11 in reply to PMRpro]

I love autumn, yes, time for some delicious Italian fare, you luckyduck!! 🍝

[PMRCanada in reply to Siena62]

Exactly!!

[SheffieldJane]

well I think you’ve done great. I moved to fortnightly Tocilizumab injections and honestly didn’t notice any difference and when I had to stop due to diverticulitis I experienced no withdrawal. Quite unlike Pred in that respect. Wish I could still have it.

[Chrisellie]

started 40 mg pred for Pmr GCA LVV.

2.5 months later on Tocilizumab injections weekly.

7 months later off pred totally and continuing to complete the 12 month course of injections. Full details in my profile.

I fell off the cliff and flew 😄.

In remission for 2.5 years.

[Jonimoroni in reply to Chrisellie]

the BEST news!! Wonderful!

[LetsLearn]

I spoke to Rheumatologist today because my fortnightly Actemra injections cease in Feb 2023. He’s putting me on low dose Methotrexate a month prior to stopping Actemra and transitioning to Methotrexate with regular monitoring of bloods. I’ve been off pred for 4 months now and so far so good. I started with GCA and then developed PMR which all turned into Vasculitis so they are keeping close watch. I feel great off Pred! Go well!

[PMR2011]

Last fall I was on TCZ every 3 weeks and off Pred and doing great. So stopped TCZ completely. No issues with stopping. Continued to feel great until January (2 1/2 months after stopping) when I started with aches, then hoarseness and ear ache (my GCA symptoms). Markers were raised. So restarted TCZ weekly at first, then every other. Back to feeling well and will probably go back to every 3 weeks soon. I fear that may be what I need for life as I’ve been on this journey for 11 years. However very happy to be off Pred as feel sooo much better. So it may take a couple months to know if the disease is still present once off TCZ. Am lucky to be able to stay in TCZ in the US.

[Jonimoroni]

ok - Thanks for all the input!

my plan going forward : 10 day intervals next 2 TCZ injections, if all seem well I’ll go to 14 days. And stick with my DSNS Pred reductions - can only see how it goes! Blood tests planned for November. Will report back if anything interesting happens! x

[PMRpro Ambassador in reply to Jonimoroni]

Sounds like a plan!