Steroid sparers

[marantha]

I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I’m now concerned as to next “experiment”. Any advice? Feel I just want to say “ leave me alone”. I’m on 6 mg pred.

[SheffieldJane]

Are they withdrawing Tocilizumab purely because your time on it has run out rather than for medical reasons?I will be in this situation in a few weeks along with many others I suspect.

I am not familiar with Mycophenolate.

I am on 8 mgs of Prednisalone and experience PMR symptoms and headaches if I try to drop lower. I do not experience symptoms when I pause Tocilizumab which I have done for infections or Antibiotics - 3 weeks max. I wonder if it is actually doing anything. I have GCA/LVV not affecting my temples as far as I know.

[marantha in reply to SheffieldJane]

Yes time is up. I think I’d rather just stop the Tocilizumab as you say . We really don’t know what it’s doing do we? I think I’m going to push for this at next phone call. I thought this remote consultation was ok at first but now I have questions it feels rather unsatisfactory. Hope you go on ok.

[DorsetLady PMRGCAuk volunteer]

“Feel I just want to say “ leave me alone”. I’m on 6 mg pred.”…

Totally agree with you, why add in another drug when you are on such a low dose of steroids…which have very little in the side effect line at that dose and below.

Can’t see your previous post, only replies to other people. …But guess Rheumy thinks that after 3 years you should be off steroids…. Isn’t as simple as that.

So long as you feel okay, I would suggest you continue the slow taper you mentioned in last reply with steroids, and stall on adding in anything else.

[marantha in reply to DorsetLady]

I’ve been really pleased with my care up to now but it’s beginning to feel that they think I’m not playing the game.

[DorsetLady PMRGCAuk volunteer in reply to marantha]

Yes, I think that’s a very common feeling…....some doctors just don’t like the thought of steroids, even though they are the best at treating the inflammation associated with GCA and/or PMR.

We know they have side effects, but as Pred has been around a long time, people know how to deal with them.

I understand we have to try new medication or we’d never move on, but sometimes the tried and tested ones do work!

[SheffieldJane in reply to DorsetLady]

What concerns me is the relatively short time I have been on Prednisalone for GCA. (12 months) Without the addition of Tocilizumab, it would have been a lot longer. I wonder if a relapse will be inevitable?

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Wish I could answer that for you….having never been on TCZ can’t comment on it, but I guess it depends how active or not your GCA still is.

Plus of course you have PMR as well, which I think makes things more difficult …..my GCA was just that and I think quite straightforward (despite the hoohah beforehand) - also the slow taper I was allowed to follow meant no relapses. I do realise how much that helped.

Having read others stories over the last 10 years or so, I realise my taper was easy.

[SheffieldJane in reply to DorsetLady]

I think non cranial GCA/LVV is less clearly defined symptomatically. No jaw claudication, unusual headaches, eye symptoms. You basically feel unwell with a shifting symptom picture. My recent Cardiac MRI was to look for damage to the Aorta, based on the occasional symptom of oxygen starvation. There is the ever present risk of it involving the temporal arteries.

[PMRpro Ambassador in reply to SheffieldJane]

In the trials most people were off pred after 12 months - that is the idea of TCZ after all! How long they are able to go without either remains to be seen but the follow-up study was quite encouraging with people having variable extened periods without TCZ or pred.

[SheffieldJane in reply to PMRpro]

Thanks for this. I wasn’t clear on how much the 12 month period was governed by finances as opposed to medical indicators.

[PMRpro Ambassador in reply to SheffieldJane]

The 12 month rule was almost certainly informed by the clinical trial result - someone decided if that achieved remission on a high enough proportion of patients, that was all you would get, irrespective. To save money ...

[Constance13]

As I have never heard of Mycophenolate I thought I'd look it up. I'm not sure ANYONE should be taking it? Why was it prescribed?

[marantha in reply to Constance13]

As a steroid sparer! Think I’d rather take my chances with Prednisolone.

[Constance13 in reply to marantha]

I'm 82 and have been taking Pred for 10 years and I'm not dead yet!😂👵🏻

[broomfield28 in reply to Constance13]

So pleased to hear that!🥳👍

[Katiecatweazel]

Hello Marantha, I was on TCZ for a year and then it was stopped and I was put on Methotrexate plus a continuing fairly low dose of Prednisolone. After two or three months I stopped MTX because of breathing problems. A PET scan and raised CRP still showed internal inflammation so I started Mycophenolate plus Pred but I do not feel well on Myco and have raised blood pressure. I have therefore gone back to just Pred where I am most comfortable. The consultant will, I think, encourage me to start it again as a steroid sparer. All the best!

[PMRpro Ambassador in reply to Katiecatweazel]

There is something inherently wrong when a limit is set to use of the drug that works that then is found to not work for everyone - and they don't then follow the science that shows that patients who relapse respond well to restarting the drug. That is discussed in the follow-up work on the longer term results after TCZ use.

[Katiecatweazel in reply to PMRpro]

I am to have a telecon with my R tomorrow, when I suspect Mycophenolate will be promoted again. I will raise your very good point. She did at one stage float the idea that I might be a candidate for restarting TCZ but appears to have shelved it in favour of steroid sparers. TCZ for 1 year had worked brilliantly. Thanks very much, I'll press on!

[Elle914]

Hello Marantha, I just started TCZ By home injection yesterday. The rationale is it’s considered a “steroid sparing” drug that helps PMR folks taper off prednisone—when attempts at tapering has been unsuccessful. I live in New York. The drug prescribed by rheumy is covered by my insurance except for a fat co-pay (ouch!). I’m in line for Genentech to pay, but at the back of the line due to TCZ use for hospitalized Covid patients.

Posts here are informative and often amusing. Thought I’d chime in. Will post my progress.

[broomfield28 in reply to Elle914]

Sorry you have to pay for your TCZ. At least here in UK we don’t have that added worry. They really don’t know what to do with us all do they?