I have recently managed to to taper off Prednisolone, after two years of attempting to stop. I am currently being treated with Methotrexate at 20mg/week, but have experienced some symptoms returning, significantly, headaches, painful muscle stiffness and general fatigue. My Rheumatologist suggested a combination of Methotrexate and Prednisolone, to compensate, but I’m hesitant as the Prednisolone is active in the effects on my type 2 diabetes. With the reduction of the corticosteroids, I have managed to reduce my insulin usage to just over half of the units used at the worst circumstance.
My question, or request, is for information or experience using the combination of treatments, on the effectiveness on easing PMRGCA, and / or the singular use of MTX as the way forward. My reading on the matter suggests a varied response across sufferers, but may come down to a personal conclusion.
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JaiSea
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Methotrexate only works well for a small cohort of PMR patients and normally you would be started on MTX while still on pred in an attempt to enable reduction of the pred. For the majority of patients it appears that MTX allows only a modest reduction if any at all. And longer term it appears to work less well for many patients. A study is underway to assess properly what its role in PMR - the evidence to date is poor and pretty equivocal. The main small study done in Italy found that after a year MTX did result in a lower cumulative dose of pred - but after 5 years, a follow-up found that the long term side effects of pred were no different. If MTX replaced pred in PMR they would use it from the start, They don't.
Thanks for the assurance about MTX. I have read about similar results and realised that the drug wasn’t a ‘fix all’ for replacement of pred. I certainly don’t feel as well as I have done on 25mg of the steroid, but thought I owed it to myself to see where MTX could lead. I might just have to accept the problematic issues with my diabetes, against proven circumstances of increased dosages of Prednisolone. Thanks for the input.
25mg of pred is a high dose for PMR - did you try to taper the dose? Most people get below 10mg pred for the longer term. At 25mg no wonder your sugars were a tad elevated!
How were you told to taper the dose? Did you try a lower starting dose? 15mg is more usual, if that doesn't work then 20 usually dose and 25mg is unusual.
I was started at 70mg when diagnosed, and then tapered rapidly but struggled with relapses. After slowing the taper I still suffered when the dose fell below 15mg and Rheumatologist decided to hold me there whilst the diabetes nurse tried to correct my climbing level of blood sugar. Trying various methods, a biphasic insulin has been the answer, although I was reaching the top end of this particular treatment. Meanwhile my requirement for Prednisolone increased and I eventually topped out at 25mg, and the Rheumatologist suggested using MTX alongside the Pred to reduce my dependence on the steroid. I have persisted with a taper of 0.5mg/week, although, symptoms seemed to reoccur briefly on a regular cycle. The problems have increased since I dropped below 10mg of Pred but I didn’t wish to undo the achievement in light of the reduction of insulin units and the improved control of my diabetes. However, it has come to a juggling act of cost/benefit analysis, in health terms, and trying to understand if I’m actually gaining from the use of MTX.
Thanks for the input as any information is generally sparse for this particular issue.
Although you can reduce relatively quickly on higher doses with GCA, as you discovered once you get to PMR-type levels you really need to slow down.
I very often quote it took me as long, if not longer, to get from 10mg to zero as it did to get from 80mg to 10mg. And I spent 2 weeks at 80mg and then another 8 weeks at 60mg.
2 years is pretty quick for GCA - more usual is nearer 4 years, but I can understand with your diabetes you, and your doctors were anxious to reduce more quickly. But as you have discovered your GCA is still very much alive…just wondering if you would be a candidate for Actemra/Tocilizumab, might be worth discussing with Rheumy - although the criteria for getting it are quite strict. ..and it doesn’t work for everyone.
Yes, the experience has been a very rapid learning curve! I had been a very disciplined diabetic, relying on diet, exercise and a minor insulin inducing drug, having a very simple interface with the medical profession. The PMRGCA was a rather dramatic interlude in my life, and the response was all very new, from a disease of a gradual degradation, to one that had me in and out of hospital. Search, sift and read was my only defence. I’m still learning and understand that many sufferers have struggled for longer periods with this debilitating illness and the effects of corticosteroids, and perhaps my journey is just beginning. I read that there are other drugs that could be used, but as you suggest, the strict application maybe a restriction for my use, and of course, if not successful an awful drain on the NHS in it’s present circumstances. I do accept that Prednisolone was a vast improvement against the pain and weakness, but as usual, there is a cost in life, and mine is the control of diabetes.
My suffering was pre diagnosis- 18 months in total - which led to sight loss in right eye… once on Pred - albeit high with all that that entails - it was fairly easy.
No significant long term side effects - fortunately and a GP [she missed all the red flags and went off on tangent with her initial thoughts] discussed every taper with me, rather than imposed them. Was diagnosed by Ophthamologist in A&E - and initial treatment advised by his senior consultant - so very little input from Rheumy… and having read numerous comments over the years on this forum realised that was probably a bonus.
When I changed surgeries, the senior partner- very experienced GP took over my treatment - again without any pushing to reduce asap, saying I knew my illness and body better than he did.
After a very inauspicious start and a very sharp learning curve, I felt I had control… and sure that helped me through my GCA. But not everyone is so lucky.
It does seem the experiences when diagnosed differ greatly without too much consistency. My GP did pick it up eventually after a week or so, but did require a second opinion before I was shipped off to hospital. I went straight into Rheumatology and after delay, to surgery for the biopsy, even though the likelihood of finding the cells was low. I haven’t seen my GP since that beginning, only working with nurses for blood testing or diabetes. The Rheumy has seen me once since last July after the initial flurry of activity, however I’ve been through multiple scans and investigations to eliminate any other possible causes.
I’m learning fast, and hope, as with the diabetes, to take ownership, and be the author of my own story on this particular journey.
Thank you for the dialogue and info, the insight of others always helps.
I agree with DL - and I do wonder why your rheumy hasn't considered an application for Actemra on a special case ground. You aren't "just" PMR, I assume GCA must have been diagnosed originally, The other question is about the management of the diabetes - I assume you have a continuous monitor? What about a pump?
Originally diagnosed with GCA but unfortunately not achieving the ‘gold standard’ from the biopsy (both sides) being on a high dosage of Pred and taking time to enter a hospital at the height of the Pandemic. Perhaps the reason my Rheumy has chosen not to try another drug but is definitive about his diagnosis.
No constant monitoring or pump, as the diabetes nurse believes I’m very disciplined and would not gain from the expense, and to be fair, I have overcome the injecting fear and maintain a credible HbA1c given all variables.
I am currently taking both , 10 Mg MTX meta jet and 4mg of pred , I was on 5mg of pred when I started MTX and got down to 3 , but found I couldn’t stay at that level . Over around about a month my aches and pains started coming back I increased pred to 4mg and found that to be my base , I’m steady on that for now.
Reading through what has been experienced and written here, I realise I might’ve been too hasty to stop the Pred. In fairness, the Rheumy did give me the option to add the steroid back into the mix, but I was caught up on the effects it has had on my diabetes, and was hoping for a return to my original controlled HbA1c results. Sifting through past discussion and reading straight advice, if I’m to relieve a resurgent PMRGCA, then I will have to endure the more complex control of blood sugar and the inherent risks that brings. Prednisolone has brought me great relief in the past, but seems my price is the complexities of injecting insulin.
Hi JaiSea, I will add my own story because, as you say, there doesn’t appear to be many people on the MTX/Pred mix and I find it really useful to hear other’s experiences.
Having been on MTX for 2 years and still feeling the drop of every 0.25mg of Pred, I was convinced the MTX wasn’t doing anything for me, but the side effects* were very evident and were getting me down (*continual colds/flu, warts and verrucas, mouth ulcers and broken skin that took months to heal). I was down to 1.5mg Pred along with the weekly dose of 20mg MTX. I asked my Rhuemy if I could come off MTX but he said no, but you can halve the dose. The effect of halving the dose was immediate with aches, pains and discomfort returning within 2 days of the drop. I stuck it out for 5 weeks then took myself back up to 15mg, but this still didn’t ease my discomfort. After speaking to a prescribing specialist Nurse on the Rhuemy Advice Line we agreed I should return to 20mg – where I WAS comfortable. This is where I am now – 20mg MTX with 1.5mg Pred. Although I am not as comfortable as I was, I once again, felt an improvement immediately after the increased dose of MTX, so I am hopeful that in a couple of weeks I will feel good enough to consider a slow tapered drop of Pred from 1.5mg to 1.25mg. IF (and it is a big IF) I manage to get off of Pred in the future, I will be very wary of how I attempt to come off MTX.
That is useful information on your experience with MTX. My Rheumy offered me a return to 5mg of Pred but my inclination was to avoid the steroid, which was an over hasty decision in light of the discussion on the forum. I’ve not been sufferer for so long, and was groping for information at all levels, being a relatively fit 60+ year old, and knocked sideways by this debilitating illness. Not realising the oft quoted guidance of medical practitioners was rather misleading, and that the continued use of Pred has more benefits than accepted by the medics. As I have already stated, my price is the worsening of my diabetes, but I think I’ve got a handle on that now, and can definitely say that use of Pred changed my suffering significantly. Now to convince my Rheumy and hope my GP isn’t obstructive.
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