I've been on methylprednisolone since March 2024. Started at 64mg per day and reduced successfully to 8mg per day 6 weeks ago.Have had no pain since starting but this week I have had some pain in shoulders neck, upper arms and hips.
I was due to reduce to 4mg on Monday but think I should take a blood test to check inflammation levels before reducing to 4mg as don't want pain to get worse. I have been doing a lot of swimming and pilates daily since June so could I have been overexercising.? Any advice would be appreciated.
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Lasagne777
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Sounds as if the extra activity may have been too much for the 8mg -may ease off exercise and see if things settle. Hopefully they will, but if not you may need to treat as flare.
By all means get a blood test -but remember they sometimes lag behind -so symptoms are the key.
Thankyou , your tapering schedules are very useful . Will suggest to my consultant and try to taper very slowly now . Thankyou for sharing these schedules.
Personally I would stay where you are for the time being. You are now in the area where your adrenal glands are starting to come back into the land of the living as well, so it is worth while taking your time.
I agree with the others - but do all you can to avoid dropping from 8 to 4mg if that is what I understand you are proposing!!!! That is a massive drop that will take you to a dose where adrenal insufficiency will raise its head until you adjust. I do appreciate Medrol comes in 4mg tablets and getting down to 1mg by cutting isn't easy. But you must adjust the dose in smaller steps but cutting as much as you can and using one of the slowed tapers we talk about and slowed even further by repeating steps.
Thankyou 4 weeks on 8mg then 4 weeks on 4mg was on the advice of my consultant . Maybe thats because of the 4mg tablets issued . Is there published tapering guidelines for Medrol or Prednol methylprednisolone ?
Not sure there is for long term use for PMR…most seem to be for short term courses… but you can still attempt to cut the tablets into halves if not quarters… and follow usual tapering plan for other forms of Pred .. and maybe use the ultra long taper in my link -
At this stage in particular there are recommendations from endocrinologists that 10% of the current dose at a time is the maximum you should aim for. Difficult with methylpred after longterm use of it and very high doses that will definitely have led to adrenal suppression. You can get 2mg tablets - though a lot of pharamcists will try to tell you you can't.
I was assuming you were diagnosed with GCA but see it was PMR - what on earth was your consultant doing putting you on the equivalent of 80mg prednisone? That must have been horrendous - and totally unnecessary for PMR.
You are now in the more normal range for PMR, a starting dose of about 15mg pred would be 12mg methylpred. However, that enormous starting dose has no sway now, it cured nothing, if the underlying autoimmune cause of the PMR symptoms is still active you will still need enough pred to manage it. So the tapering at this stage needs to be in small steps - identify the dose you need accurately, Since even 1/2mg can make the difference, 8mg is enough but 4mg possibly won't be but is it 7.5mg you need or 4.5? No way of telling when you halved the dose to get there.
And return of adrenal function is a slow process - even after "only" 5 months but the massive doses definitely will have had an effect.
This is a very good tapering approach which I recommend as a published example. The author is now professor of rheumatology at a hospital near London, UK and she still uses it - because it works.
There are also other recommended tapers that are basically the same in various guidelines. What they ALL have in common is that from 10mg pred/8mg methylpred it should be 1mg at a time. Not 5/4mg as your doctor suggested. And in our experience, 1mg at a time can be too much - and all the guidelines say that the taper should be adjusted for the individual patient.
Thankyou PMRpro. The higher dose was given because of the severity of my symptoms at diagnosis. Also my inflammation levels were 10x higher than normal. The consultant made the right decision as within 24 hrs I was pain free and stiffness gone. That remained so until last Tuesday the 5th week on 8mg . I have been so well apart from this week. 64mg to 8mg I even felt better than a year before diagnosis. Now I understand the tapering for me must be slower and not fortnightly as it was from 64 mg to 8mg. I am thankful though that up till now it went so well and without any symptoms .
I would certainly not fault the decisions my consultant has made so far. His care has been excellent. Prednol advices 4mg decreases in their tapering schedule but as you say every person reacts differently so I may need to taper now in 1mg dose decreases.
Bear in mind that those tapering schedules are for short term use of steroids - not when you have been on them for months and that makes it a very different case.
Thankyou this link worked . I checked the insert of my steroids medication and up to 80mcg can be prescribed per day for severe symptoms . So my starting dose of 64mcg was below this .
Anyhow thanks for your advice and will speak to my consultant about tapering more slowly . Have a blessed day. .
Noone has said you can't prescribe those doses, What we said was that that is an extremely excessive dose for a diagnosis of PMR and far outwith PMR guidelines meaning you were exposed unnecessarily to quite a high accumulated dose of steroid. Different thing altogether.
My consultant was following PMR guidelines from his Health Service.advice in another country . Not UK PMR guidelines . You will have gathered I was not very happy that you criticised his decision to prescribe an initial high dose. Different countries use different medications and guidelines.
Thankyou but I don't expect they use EULAR in the location where I was diagnosed . Very interesting to read though. Need to find out the guidelines that were used .
What country are you in by the way? I see you haven't given that in your bio and we do ask you to complete it so we can give country-appropriate advice.
Ah so. Yes, we have had members from Cyprus who have been treated in quite, shall we say unusual ways. I think when you return to Scotland you will find they are equally as astounded at the dose you were started on as we are. Northern Cyprus probably doesn't see many cases of PMR so I suppose I should be impressed they recognised it.
Yes I too was surprised they recognised it immediately. My late mother had it too so knew exactly the symptoms . They actually don't see a lot of this condition in the hot climates as it more prevalent in the northern countries so was very surprised he recognised it.Thankyou for your understanding and advice . Keep up the good work. I'm sure many sufferers like me are so happy to have the support and advice .
We do meet doctors in other paces, including the USA, who have strange ideas about the starting dose for PMR. 15 to 20mg is much more standard - simply because it is very unusual to need more than 20-25mg to manage PMR however bad it is. 40mg is the starting dose for uncomplicated GCA while 60-80mg pred is reserved for patients who have the red flag symptoms that suggest vision is at risk such as visual symptoms and jaw claudication.
It is strange - in mainland Europe the incidence falls as you go further south but some of the best research groups have been in Italy and Spain. I assume it is linked with the historical occupation of both southern Italy and Spain as outposts from Britain and France leaving some very northern genes in the pool.
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