Since being diagnosed late Jan this year I have for the 2nd time tapered down to 20mg Pred- both times had to go back up to 30 & 25mg. Last month down to 20mg again & then another return of symptoms after 2 weeks. Hospital 'specialist Rheumy nurse' told me to go back to 25mg again & that my Consultant wanted me to go on Methotrexate-(which I said i would not, as I had been given no information about it, no understanding of what it was for or what it entailed-nothing) I had of course researched myself & on here so knew more about it than I let on! However, I increased to the 25mg & symptoms settled down again. Saw Rheumy last Monday & he wanted me to go straight away onto Methotrexate - which I said I did not want to do & explained why, he gave me a leaflet on it & told me that it had a 60-70% success rate?!? After a bit of a discussion he said that I could taper down by 2. 5mg every month for the next 3 months until I am at 10mg when I see him next in 3 months time. I tried to tell him I would rather do a'slow'taper as I fear the symptoms returning & he said he fears I am becoming 'steroid' dependent & I need to get off them quicker. He also said that I am also eligible for the Tocilizumab (?)as I had a positive biopsy but I would have to try the Methotrexate first. My question is- at what dose & time scale would you normally be put onto Methotrexate? I really don't want to go on it & even after 2 days of reducing to 22.5mg I am not feeling that things are 'quite right'.
I have to say that my Rheumy is a lovely man, very concerned, very interested but it seems that the policy is to get me down & off the Pred asap. Any ideas?
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Janeval
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Blowed if I know where he gets a 60-70% success rate for MTX in GCA since Prof Dasgupta has said very clearly in the past that there is no role for MTX in GCA and to be honest - he has probably forgotten more about GCA than most ever learn. On the other hand, things move on and there is this newer publication suggesting it might do something
from the Mayo, probably reliable enough, and you can at least read the whole thing free !! The discussion is good - but I can't see any indication of 60-70% success unless you count a modest reduction in dose over time as a success, Both the groups improved over time in terms of relapses - they would, GCA DOES fade over time and many patients get off pred in 4-5 years just using sensible tapering. Your guy's approach to tapering is NOT sensible by our standards, And quite a few patients discontinued MTX because of adverse effects.
There possibly IS a role for MTX for SOME patients. I would say it isn't surprising that you are flaring in the low 20s after only 4 months - most people I know took at least 6 months to get down to 20mg and you have already been down there once already - we know that if you allow patients to flare in the early months it does seem to make it harder to get things under control and taper again. The more it happens - the worse it is. GCA is very prone to flaring in the first 18 months - and the most common cause of flares is reducing the pred dose too fast.
MTX was a disaster for me and I'm not alone. I couldn't have lived with feeling as I did for the 6 to 12 months the study says is needed to see an impact on the dose. However, we know that for a small cohort of PMR patients it works brilliantly and they get off pred. Unfortunately, there are no predicting factors for which group you belong to - you have to try. And the prize for trying is to get onto TCZ if it fails or you can't stand it. Still only for a year in the UK and that really doesn't appear to be long enough but it is what it is and things may well change.
I think you have to try it - you may be one of the patients who is absolutely fine and has no adverse effects. But have a very low threshold for saying you can't tolerate it. If you feel worse on it - say so clearly.
Thanks for this info and my apologies for not replying sooner. I've read the attached publications but I'm still very wary at this stage. I know that they've tapered me down too quickly and am now suffering the consequences but I agree, from 60mg starting dose at the end of Jan to 22.5mg now seems to be much quicker than everyone on here!
I've now been on the 25mg for 5 days and apart from the odd 'niggles' again I seem to be ok at the moment, I'll just have to wait and see.
You may or you may not get authorisation for TCZ - relapsing or refractory GCA is a valid reason, but I would say the main reason for your relapses is too fast a taper.
Had you been allowed to reduce more slowly then you probably would be managing your GCA quite well.
After a bit of a discussion he said that I could taper down by 2. 5mg every month for the next 3 months until I am at 10mg when I see him next in 3 months time
If you are on 25mg at the moment - not sure by reducing 2.5mg per month how you are going to get to 10mg within 3 months....in my maths you'll only be on 17.5mg in that time...getting to 10mg will be 6 months. 😏
You would have to try MTX first, but it doesn't suit everybody, but then neither is TCZ a guarantee...
There a quite a few of us on here got through GCA [before TCZ was approved by NICE] on Pred alone in much similar timeframe than those will added extras ...and we haven't necessarily disintegrated into quivering wrecks...
Yes he did seem to infer that the TCZ would only be IF the MTX was tried first but I would like to avoid both if I can. Sorry, he said 2.5mg every 2 weeks - therefore I would be down to 10mg in 3 months. However, I'm not going to rush it and think I will do your slow taper by 2.5mg each month. He just seems to be in such a rush to get me off them and after reading all the comments on here I have learnt that it has to be slow.
What about 2.5mg per month but with smaller drops in between to cover the 2.5mg?
I would love him to describe the physiological process beyond steroid dependency at these doses. Is it because we get hooked on how fabulous we feel?? Yes one’s body becomes accustomed to Pred as it affects everything and when you change the dose you get withdrawal and if you feel rubbish in the week you reduce. Is there any chance it may be that? Even on these higher doses I had to spend a few days lying down a lot after a drop. Perhaps he meant that. You can be classed as steroid dependent if your adrenal function does not return but that is at lower than 5mg you start to worry about that.
Sorry, what do you mean by the 2.5mg a month but with smaller drops?Unfortunately I really don't feel fabulous on Pred- wish I did! Yes, I did wonder how after 4 months I could be 'steroid dependent??
For example 0.5mg less each week so after 5 weeks you have dropped 2.5mg. I found smoothing out the ‘staircase’ made the withdrawal symptoms less intense.
I'm chipping in because when I started with GCA two years ago for various reasons I saw a lot of consultants. They were ok actually and tended to say the same things. Obviously focused on getting off pred but they were sensible about it - nothing like what your chap is saying. They were also consistent that taking steroiod sparers should only happen if you can't successfully taper but not just after 4 and a bit months which seems far too soon to tell. We need to stabilise symptoms before we can effectively taper.
Have you looked at the national guidelines to see if your consultant is following them? Some of the things he said appear idiosyncratic. Can you see another one? Sorry this is happening to you. It is hard enough without difficulties with consultant, however nice. Keep a symptom journal. Things will get better.
Yes, I also think that after the short time I've been on Pred that it is too soon to put me on MTX & I certainly do not feel stable yet! It's the fatigue I have which is the worst thing and that is hard enough to cope with some days. No, I've not read the national guidelines, where can i see those?
A bit late, but I had an email asking me whether I had anything to add!
I started MTX when I couldn't get below 15mg, despite several tries. It didn't help at all, just stole away most of my hair. Fortunately it has grown back! Otherwise, it didn't do any apparent damage either.
All in all, I feel it 'wasted' 6 months before I was allowed to have TCZ. Because that bit is true, in some areas at least - you have to have tried MTX before you can TCZ.
Now TCZ really might help - it took 15 months, but I did get off pred.
However, TCZ is not entirely benign either. It suppresses your immune system at least part of it. Currently I have had to miss 7 doses because of pneumonia that sneaked in when my neutrophils were low. Really quite ill. Having said that, your blood will be tested regularly so any problem like this should show up.
On balance, if trying MTX is a condition for trying TCZ, I would accept it. Just report it asap if anything goes wrong, and if your hair starts falling out, bear in mine that you can have folic acid prescribed for up to 6 days a week - on all days but the MTX day.
Never too late to reply or give info! I haven't been on here to reply to others until today either. I agree, I thought it would be MTX when i had reached a lower dose than I have and I am still very reluctant to go on it especially with the possibility of hair loss. I had breast cancer 6 years ago & lost all my hair from the chemo then and I honestly couldnt bear to go through that again. Plus from what I've read it means your immune system is much lower too, which in turn means having to be far more careful with mixing, germs etc? It's a tough one and I do feel I am not being given much choice by my Rheumy.
Don't worry too much about the hair loss. It's a much lower dose you get for GCA than cancer: it won't suddenly all fall out. You'll have time to get the folic acid dose increased before it gets too bad.
Yes, it does have an impact on your immune system, but not as bad as TCZ. I don't know whether or not it helps to be careful. I have had both Covid and pneumonia this year, and I have no idea where either came from!
Thank you- I was imagining my hair coming out in clumps again & the thought of it was awful. So the folic acid helps to prevent that I presume. Yes the immunity thing is not good but I try not to think about it as I just want to get on with life & yes, possibly at my own expense but there again I don't want to not be able to do things & go places! Yes I've had Covid twice, even though I've had all the jabs! That's life, you're either lucky or unlucky whatever you do.
Anyway, I'll see how I go but am really hoping to get down to at least 15mg before I even have to consider MTX.
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