Back on pred 6 months after coming off actemera

[Devoid]

Well all was well and then the wheels fell off . Consultant basically said I was finished with vasculitis, even discharged me !! Hopefully this is just a blip but he says if not I will need a positive pet scan for evidence to Nice that I need TOC prescription. Anyone had a similar experience or just any thoughts. As I really don’t get on with steroids I have drastically reduced carbs so no summer of cream teas , ice cream or anything else I would like 😊

[DorsetLady PMRGCAuk volunteer]

Oh dear -bad news, but with a bit of good thrown in re TCZ…

[SheffieldJane]

Interesting that an appeal can be made. I hope Rugger sees this. She did very well with Toc too.

[PMRpro Ambassador]

That was obviously tempting fate!!!! I never managed the positive PET scan - so my rheumy went about it a different way ...

[Devoid in reply to PMRpro]

I think it’s because I would be going back on it . I had over 2 years because of covid, but it’s unbelievable how little they take into account how bad I am with steroids. Week 4 and Cushing like even when very low carb and actually lost a bit of weight. By the afternoon the discomfort in my upper body is awful

[PMRpro Ambassador in reply to Devoid]

I thought their excuse for not approving it for longer was pathetic! Either they are concerned about long term pred or they are not - and any patient who relapses should get it if they did well while on it.

[Rugger]

I have GCA-LVV and did well on TCZ, which enabled me to reduce pred to zero a couple of months ago. I was also 'fortunate' to have 2 years on TCZ due to Covid. My Rheumatologist feels I might flare on no medication at all, so she has started me on Methotrexate. I have had 9 weeks of MTX so far and no apparent problems. So I am on that alone, with no pred and no TCZ. I asked if I could have another PET-CT scan to see whether the LVV was in remission or not, hoping I might not need MTX, but she was reluctant to expose me to the radiation, having had a PET-CT scan in late 2019 when the LVV was diagnosed. (PMR 3 years before that in 2016.)

I'm sharing this with you in case MTX is an option for you, either instead of pred like me, or to enable you to reduce the pred more quickly. Otherwise, I hope you are able to go back on TCZ, if that is indicated. I realise it is very costly, but there can't be too many of us who would benefit from it for a while longer.

All the best.

[PMRpro Ambassador in reply to Rugger]

It is there for RA - for years, no limit ...

[Rugger in reply to PMRpro]

Yes, it seems unfair, as there must be more RA patients on it than with GCA. Maybe things will change.....

[Devoid in reply to Rugger]

Methotrexate is definitely not an option, had it prior to tocilizumab and thought they were trying to finish me off !!Glad to hear it’s suiting you

[Rugger in reply to Devoid]

Oh, I'm sorry about that. I do hope this is just "a blip" for you.

[scottygirl73 in reply to Devoid]

I can relate to youDevoid,i though they were trying to finish me off to.Never felt so ill still having tummy probs 3 years ltr.xx

[Chrisellie]

That’s not good. My rheumy kept me on, monitoring me for 2 years after coming off Toc injections and said if there was a relapse I would go back on Toc injections. Maybe a pet scan would have been a requirement, I don’t know that.Hope your treatment gets resumed quickly.

[Devoid in reply to Chrisellie]

The consultant discharged me 3 months after I finished tocilizumab even though the crp was climbing just said it’s nothing like when you were diagnosed. On diagnosis I had already been really poorly for 3 months. Just feel its neglectful 😩

[Chrisellie in reply to Devoid]

That sounds like a complaint.Can you be referred to a different rheumy?

[Devoid in reply to Chrisellie]

I’m down in north Devon so not much scope to change and at least he’s not against getting me a scan. Hope you are keeping well, I had got to a really good point so hopefully this is a hiccup 😊

[PMRpro Ambassador in reply to Devoid]

Oh dear - a a rheumy who doesn't understand PMR/GCA or how it works! That's like saying a tyre on the car only has a nail in it - it isn't flat yet ...

[pinks33]

I recently had a GCA flare seven months after stopping tocz, and about a year after stopping pred. I did ask about resuming tocz but my rheumy thinks I should stick with pred for now. Not sure about her reasoning, except that she is unsure about my eligibility. If tocz would help me, it seems to make more sense to be on it from the beginning, as a steroid sparer, rather than wait until I flare again in six months or a year. She also says if I do relapse on pred alone, I will get an ultrascan, though again I'm unsure what that will prove. I'm also intrigued by what you mean when you say it could be just a blip? And whether a "blip" could affect our pred dosage and how quickly we can reduce. I hope you're successful in getting it if tests show you need it. Good luck!

[Devoid in reply to pinks33]

Having come off tocilizumab at Christmas my consultant saw me in March and discharged me even though the crp was 16 , next crp 29 and symptomatic and then back on 40 mg of pred crp 33 and worsening symptoms. When I was originally Ill the inflammation run riot until tocilizumab was introduced. Nice have a lot to answer for , not quite sure why vasculitis patients are treated differently than RA patients.

[pinks33 in reply to Devoid]

I agree, it seems irrational and unfair that a distinction is made between RA and GCA for eligibility. My path to diagnosis of a flare is similar to yours. First blood test this year after persistent headache, ESR was 29, and at the next, when other symptoms emerged, it was 49. CRP was normal in both. When I was originally diagnosed four years ago, my bloods were much higher, symptoms were unbearable, and I live in hope that the inflammation is weaker this time and will be easier to control. We do have to have hope!

[Devoid in reply to pinks33]

Yes we must be positive,! In fact that was one of the things I noticed with this relapse was I felt uncharacteristically low and that was how I felt in the beginning

[pinks33 in reply to Devoid]

Same here. All my relapses seem to start with the dreaded fatigue and lethargy, before other symptoms appear.

[Kafkaontheshore]

Hi Devoid and thanks for posting this. I have a similar experience. Larger vessel vasculitis diagnosed 2020, started Tox Feb 2021 so finished Feb this year. Had been feeling OK but came off Pred altogether, taking it very slowly, end May this year. CRP 60 mid June which explained horrible fatigue, night sweats etc. Started on Pred 40mg again two weeks ago. Have been on Methotrexate over 18 months but doesn’t seem to do anything for me so hoping to stop that soon. Rheumatologist says I’ll take steriods for life but I’d heard of possibility of more Tox in relapse so I will discuss that when next speak. Awaiting scan of aorta. Not fun is it!? Good luck with it all.

[Devoid in reply to Kafkaontheshore]

Not fun at all but luckily through this forum we can compare notes. I am on week 4 of pred and the plan is to drop by 5 mg per week and have bloods 2 weeks later and pet scan if still issues. This is the consultants plan, not sure how it will work but eh oh doesn’t look like I have much choice other than to try it

[Kafkaontheshore in reply to Devoid]

Yes it’s a bit suck it and see isn’t!? Good luck with it all 🤪👍

[LemonZest11]

The reason there is a distinction between RA and GCA/LVV is lack of a study after 12 months use of tcx in the latter. All was explained to me by the Australian Health Minister and apparently it's the same in Europe/UK. USA is different though. It's all just so horrible for those of us for whom it works. I have been fortunate enough to access tcx at a subsidised rate, but had to jump through hoops to get it. All the best for you, it's been life-changing for me.

[PMRpro Ambassador in reply to LemonZest11]

Yes - NICE told me that during a consultation I was part of. They claimed the long term safety was their concern - which is pretty ridiculous if it is safe enough to use longer term in RA! They did get a bit iffy and defensive when I said the impression created is one of ageism - and in the original GCA consultation the same question was asked when they almost said no. And within weeks it was approved!!

[LemonZest11]

It doesn't work like that in Australia, if the drug hasn't been approved for government funding beyond trials, then you can't have it. I have accessed heavily subsidised long term allocation through advocacy. It's been a journey but we got there.

[PMR2011]

Sorry to hear this. I had similar experience. Off TCZ last Sept (after 3 yrs on it and completely off Pred) due to slightly elevated Creatinine (kidney function). January fatigue and pain niggles started. Sure enough elevated Sed and CRP. Rheumie started TCZ right away again with a few weeks of Pred until the TCZ kicked in (am in the US). Am now down to every other week injections, no other meds and feeling great. Agree with PMR Pro, I think it’s ageist as the drug has been used long term in arthritis pts. I suspect if you added up cost of Pred side effects, complications from under treating and other drugs TCZ might actually end up being equal in cost!

[Devoid]

Your consultant sounds very sensible, its just like it remembers where it run in my system, my left arm in particular has never felt normal since diagnosis