7 months on the GCA bandwagon, I wonder if I could share my latest situation and get your opinions re the rate of reduction of Pred (although I think I know the answer). Taken down from 60 mg to 12.5 since last August - last week had a flare (return of double vision, just for a a couple of hours, but confirmed by Moorfields and my hospital's opthalmolgy department that it was indeed a flare). So, straight back up to 60mg, now with added methotrexate (?) - and here's my hesitation: the rheumatologist's new dosing sheet aims to reduce me by 10 mg every two weeks for the next 12 weeks, ie in 3 months I'd be on 10mg. Surely this is much too fast? Or, is the speed of it supposedly being offset by the introduction of methotrexate? (Which, having read up on possible side effects, I really didn't want to take...) Any advice from you brilliant experts would be welcome, thankyou.
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Frewen1
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Never took MTX, so can't comment on that, but I do believe that new dosing sheet is not that unusual. Whether it works or not I wouldn't like to say...but like you I'd be a bit apprehensive.
Hopefully a successful user will advise accordingly.
Personal opinion - original reduction was suicidal and had that been managed better you wouldn't be in this position - but too late now.
"When should further, non-biologic immunosuppression be added to glucocorticoid therapy for GCA? (PICO 9, 10)
8. Conditional recommendation: Methotrexate might be considered for GCA, in combination with a glucocorticoid taper, in patients at high risk of glucocorticoid toxicity or who relapse. There is insufficient evidence to recommend any other oral immunosuppressive agent in GCA, including azathioprine, leflunomide or mycophenolate mofetil. QoE: ++. Consensus score: 8.92.
Methotrexate, which may be given orally or by subcutaneous injection, has been used at doses of 7.5–15 mg weekly in clinical studies and up to 25 mg weekly in clinical practice. On the basis of three randomized controlled trials, conducted in patients with recent-onset GCA, the evidence for methotrexate as a glucocorticoid-sparing agent in GCA remains equivocal, acknowledging limitations of the evidence base. In contrast, other immunosuppressants (including azathioprine, leflunomide and mycophenolate) have not been adequately tested in clinical trials. The potential toxicity of dapsone or ciclosporin is likely to outweigh any possible benefit and their use is not recommended."
Hardly sounds a ringing endorsement to me!
OTOH - if this fails, you may well be offered tocilizumab - which is known to work.
Hello, we’re you symptom free before every reduction? If not, where did it start to go wrong? Quite a rapid reduction, but from my experience a couple of the docs had the attitude that you reduce rapidly, get a flare and then just add in a steroid sparer. One said, “when it goes wrong we’ll use Tocilizumab”. Luckily for me, the Rheumatology Dept was overrun so my appointments were few and far between so by the time he saw me at your stage, 7 months later, I was still nicely around 17/18mg, much to his horror. I stuck my ground and said I had successfully got this far so wasn’t about to upset the apple cart.
Unfortunately yours has been upset. You have two choices and they are choices really. Go with the steroid sparer because it allows a lower dose of Pred, hence the rapid reduction. I would want some proper local stats on how effective this is in terms of adverse events, how quickly people achieve and maintain remission and what the relapse rate is because it doesn’t work for everybody. You could ask about Tocilizumab which goes for Interleukin-6 specifically which is implicated in GCA.
Or, stick with Pred and perhaps see if they are happy to reduce a bit quicker to near to where you were last ok and then reduce really slowly from there. Just an idea but it’s a clinical call. The trouble is that they have their gold standards and local protocols and dislike deviating from them even when one size doesn’t fit all. Despite that I’ve noticed it’s an area where some are quite happy to go off piste because it is their personal opinion yet the patient isn’t allowed to have one.
If it was me I’d want a second try because in the period where relapses are the most likely I was made to reduce too fast. But there are risks and benefits. If symptoms were still lurking before reductions I’d say I’d been stuck on a stallion and someone whacked its rear.
Thank you so much for the time put into all these replies. The thing is, I can't answer this question, about symptoms - ever since I started on the Pred, I've felt consistently "out of body, muzzy, fuzzy, weak limbed, as if I'm radioactive",cetc etc... and every time I ask the question, is this the Pred or the illness, the answer is consistently "don't know. Could be either". So, as a relative newcomer, I'm still in the dark. If the evidence of things changing is the double vision, then that came back 10 days ago for the first time, but only for a couple of hours. Very marked, though. Obviously, as I'm back on 60 mg at the moment, I feel weaker than usual, but it's all the same symptoms (plus, you may all remember with delight, I'm the one with the constant leakage, which is still omnipresent! Began a week into steroids and hasn't let up). Can't get a referral, no one's taking them. thank you so much. x
I felt vile on high dose Pred. I know it was the Pred because even with GCA in full swing I didn’t have that stuff you describe until I took Pred. I know what you mean; it feels like one should be glowing green and buzzing.
Forgot to say: the Quick/Kirwan approach would have got you to 15mg at 7 months provided there had been no hiccups on the way - arguably still enough to have avoided that flare developing.
"The available evidence suggests that initial doses of 40–60 mg are needed, then about two or three times the total PMR cumulative dose will be required for perhaps six months longer (Table 5).14,35–37 The same pitfalls are seen as in PMR trials, namely the use of too high a dose of glucocorticoids initially, with too rapid a reduction in treatment thereafter.36,41 This then leads to high rates of relapse which affects the glucocorticoid tapering rate, duration of treatment and cumulative dose. "
They don't say anything about dealing with flares though. But it is well known that GCA likes to flare in the first 18 months - and that most flares are due to too enthusiastic tapering.
Brilliant, thanks so much ... indeed, TCZ was mentioned at the end of a sentence when I spoke to Rheumy the other day , whereas before she'd discounted it... I'lll give this MTX a go, I suppose, and follow the chart...
I have also had a fast taper. I started prednisone (60mg) in May and finished in October last year along with Actemra, which I’ll be finishing in June, which will have been a year. So far I haven’t had any flares and no added side effects with Actemra, but I’m nervous to see what happens after June when I’m off everything.
Methotrexate dont worry I have been on Methotrexate for the last 14 Months when I increased to 15mg Methotrexate I occasionally felt nausea so my rheumatologist put me on folic acid and now I have no problems with the Methotrexate but do not take folic acid on the same day as Methotrexate and speak to your rheumatologist nurse first and of course if you do get bad side effects you can stop the medication. I still have all my hair so dont worry about hair loss.
Your rheumy should have put you on folic acid at the same time he prescribed the methotrexate, not waited or adverse effects to appear. You were very lucky - my hair fell out in clumps from the start.
Hi Frewen1,very sorry to hear about your flare, how frustrating for you. I was on methotrexate for 5 months and had no side effects, however it didn't help with steroid reducing at that time.
The reduction proposed for you sounds fast, but 60 mg a day is awful so the sooner you can come down the better.
I've just had GCA raise its ugly head again and have so far been lucky that just raising to 20mg pd does seem to have checked it. Ever hopeful. Good luck.
I've been on mtx for 8 months because of feeling terrible on higher doses of pred and trouble with flares even on a slow taper. Took probably 3 months to kick in and since then I've been able to reduce my pred without any problems. I haven't had any problems with injectable mtx (20mg weekly) and I'm feeling almost back to normal. I'm down to 8mg pred and have been reducing 1mg every 5 weeks, I still don't want to rush it because I'm feeling so good. Bloods have all come back to normal, crp is below 3. Maybe I'll slow pred taper down to .5 once I get to 7 and see how the Adrenals kick in. My Rheumy has been great and hasn't tried to rush the taper and is ok with me reducing at my own pace. After only 14 months I think it's all going well. I think maybe I'm one of the few that mtx has helped, in any case I feel so good I don't want to change anything.
Hi there, I only have PMR and struggled to reduce my prednisone when I got from 30 mg to 15 mg , so reluctantly agreed to take methotrexate 18 months ago. I was prescribed folic acid once a week ( taken the day after the MTX day) . I felt pretty awful on the MTX and phoned the rheumy department to ask if I could reduce my dose. They told me to increase my folic acid to 6 times a week and that has stopped the nasty effects of the MTX . I do think it has helped me get down to 9 mg but I’m struggling to get lower . I spoke to my GP recently and asked him if I could come off the MTX since I was stuck at 9 mg and he told me not to because the chances were that I would have a flare without it. Best of luck !
Oh blimey ... thanks Katie ... I’ve got the folic acid to take once a week, with instructions to increase the mtx every fortnight , while reducing the Pred every fortnight... it’s like that trick where you pat your head and rub your stomach at the same time ...best of luck x Karen
It is important to take the folic acid six days a week. Doctors who prescribe it once a week don't understand the body's utilization of vitamins. B vitamins are water soluble, which means your system will pull the vitamin from the bloodstream in the amount needed through the day and the remainder will be excreted. So the protective benefit is gone for the rest of the week if only one dose is taken. Adding a B complex with all 8 essentials is a great support to the immune system and helps prevent nerve damage from the drugs. All your neurotransmitters, hormones, enzymes, and immune system cells are made from B vitamins.
Oh dear. Don't know what to do now. My folic acid prescription is for once a week only - but I do take other vitamins as well, including Vitamin B complex, so perhaps that will suffice...
Hi Frewen1🌞I don't know what dose your doctor gave for once a week, but my prescription when given last year with methotrexate was 1 mg folic acid daily.A standard B-complex product will have the recommended amount for a healthy adult, which is 400 mcg folic acid (synthetic) or 668 mcg (natural). So that product would supply 40% of my prescribed dose. You can also count the amount from a multi-vitamin.
Natural sources of folate do not require the body to do the conversion of folic acid in the liver, and do not have a risk of taking too much.
It is difficult to get enough from food. To get the RDA one would have to eat for example, 6 oz of beef liver, 1 1/2 cups cooked spinach, 2 cups of kidney beans, 2 1/2 cups of Brussels sprouts, or 3 cups avocado or cooked broccoli.
Wheat products are fortified with folic acid, but there are several reasons we shouldn't eat wheat.
Indeed, I avoid wheat myself when possible - thanks again for so much information. Just spoke to my GP, who said to get hold of the Rheumatologist, but his opinion was that, in the past, people were put on 6 days of folic acid, but recent research he'd seen seemed to advise the once a week version. I am on a 5 mg tablet once a week - so is it the regularity of taking 1mg a day that you think an improvement, as the overall weekly intake would be almost the same?
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