I reduced from 10 mg to 9.5 mg and within a couple of days experienced a terrible flare which has been worse than when i was first diagnosed. Having read the useful advice and experience on this site i increased my dose to 13mg 7 days ago. The pain, stiffness and dragging exhaustion is beginning to subside but my sleep has been v poor and cramps in my arm keeping me awake. How long does it normally take for a boost dose to reach max effect. I am drinking more water which seems to help a bit. Should I increase to 15 mg. I am still considering my rheumatologist suggestion of taking Methodrexate but am not convinced that I want to cope with a new range of drug side effects. Sorry there are a lot of questions buried here. Hard to know what to do next. Oh my blood pressure is more under control with increased dose and additional drugs. This has help breathlessness a bit too.
Increasing pred after a flare: I reduced from 10 mg... - PMRGCAuk
Increasing pred after a flare
hi,
Usual advice for dealing with a flare is contained in this link -
healthunlocked.com/pmrgcauk...
Would say as you only increased by 3mg could be the reason is is not working as quickly as you’d like, so maybe up to 15mg…. for perhaps another week. You don’t want to be on the increased dose for longer than 2 weeks or you may have issues dropping back down - and to 10mg, no lower.
Cramps may be helped by magnesium - supplements or spray, and gentle exercise, and hydration as you are doing. If it’s one arm, have you overused that arm or had it in one position too long… if it doesn’t improve, you may need to follow up with doctor.
Interesting to hear breathlessness has improved and BP on slightly higher dose.
No experience with MTX - but others will be along shortly.
Thank you. Very helpful. Sometimes you just need the reassurance that you might be doing the right thing. I have a frozen shoulder - my rheumatologist said that steroids also give you cramps. Spring does pull you out to the garden but I am trying to control those gardening urges. 🤦♀️
I agree with DL's analysis. Pred does cause cramps - because it makes you lose magnesium through the kidneys - which is why we say try magnesium supplements.
I bet the frozen shoulder isn't - it is the PMR. Very easy to get confused.
Yes not sure about shoulder just going by what the consultant said but have had xrays now just waiting for results. I have had the shoulder coming on for 3 years before the PMG symptoms. It did improve when I first went on steroids (35 mg) but that did not last for more than a few months. Probably the first thing to recur once I started tapering. Thank you for your help.
Rheumy is right, but surprised didn’t mention magnesium to help.
Agree about the gardening -my downfall too!
I eat spicy mashed sweet potato every day for magnesium and other benefits on recommendation of nutritionist. Use it a lot in soups too.
Strange choice - and not brilliant of you are trying to limit carbs. Lot of things with more magnesium than sweet potato - it's around the 25 mark per 100g so according to this
ods.od.nih.gov/factsheets/M...
ordinary spuds come out better when jacket baked.
I don't eat pots, rice or pasta and very little gluten free bread as it's horrible. This is my choice - I'm not overweight. My nutritionist is very qualified and so far my diet has helped me drop more easily without side affects unusually. Don't think I'm short of magnesium. Just love spicy sweet potato!! 😀
I love sweet potato, so does my dog, it helps him with weight control. I suspect part of my problem is not drinking enough, especially as I have put on weight since being on steroids. I have got some magnesium tablets too. Feeling a bit better. X
Great you're feeling bit better.
Thank you. I am a bit fed up with having to go up to 15 mg (and 4lbs already) to be able to go on a short walk but now I am getting it that it is not just about getting off the steroids as fast as possible but controlling the polymyalgia and the sun is shining and the days are getting longer. Take care.
I totally agree and once I got to 10mg my cravings were hugely reduced but just going up by 5mg makes me start to dream about bread - plus I live next door to a bakery ..... Thank you for all your help.
Hi Rachel,
You're sounding more positive alround. Great! A quick point from yours truly: I'd be interested to know whether you decide to take Methotrexate idc. My rheumie is suggesting possibility of similar for me BUT I am loathe to add to my daily intake of drugs - am beginning to rattle, as they say. I shall certainly avoid it if at all poss.
I feel like you. The consultant said it would help me get off steroids and lose the weight I put on (this is because methotrexate makes you feel sick I think). I am put off all the testing that goes with what is an old drug. My GP said "choose your poison"!! I will let you know - I change my mind daily but I suspect there is a drive to get us off steroids.
No, not because of the nausea - it potentiates the pred effects in some patients so you get the same effect for less pred. For me, it potentiated all the unwanted effects of pred, hunger, weight gain, fatigue, joint pain!
Nothing wrong with old drugs - they know all about them if nothing else. For some people it is a miracle - but relatively few, and certainly NOT all.
I am very nervous about trying it. I have had a lot of side effects over the years with cancer drugs onwards and I feel I can only cope with one lot at a time now. I will continue to dither until I see my test results of heart etc. 🤦♀️
Hi Rachel my husband has PMR and has seen a rheumatologist today for the first time, in the five years that he has had it. They have suggested the same drug for him as for you, but like you, it will take a lot of looking at first before he makes a decision, which they will be helping him with. He started on 15mg and has had two big flares in the last six months. He was down to 2.5mg but on his last flare a couple of weeks ago he ended up taking 18mg in 24 hours but within a week he is back to 4mg and in no pain. I wouldn’t delay in upping your amount, being comfortable and feeling well I think is more important. Wishing you all the best.
If I were at 3 or 4mg on my own and stable without flares at that I would not take MTX nor would I try to reduce any further. You aren't looking to get to zero pred come what may, you are looking for the lowest dose that controls the symptoms as well as the starting dose did. PMR can last a long time - and if it is still active, no steroid sparer will get you off pred altogether. MTX does work for a small group of PMR patients but usually they are stuck at much higher doses of pred. There are no guarantees and it comes with its own adverse effects.
Thanks for that advice, having just been reading what a lot of people are putting about their dealings with it, I’m not sure my hubby wants to even try, especially as has some blood troubles being looked at at the moment too. By the looks of things people seem to be getting low down or off the pred but then still be on a high amount of MTX! Doesn’t seem to make sense. Thank you.
The great thing is that some people get better. My sister in law also had Polymyalgia and very very slowly got better and off steroids. I remember this when a bit miserable. Xx
The vast majority of people get better ….
A lot of doctors think that MTX is a far better drug than pred. Having had both, I'd disagree! A study was done to compare the opinions for rheumatoid arthritis where it is the first line drug worldwide, Rheumies think it is a great drug, works well, no or few side effects. The patients had rather different views! About a third had to stop it because of side effects and about the same because it plain didn't work, It worked well and was well tolerated by about a third. I don't know WHY doctors aren't aware of this though.
You would think they must be aware. 🤔
I don't know - after all this time very little suprises me about what doctors believe ...
Yes I have a few friends with various rheumatic conditions and they all seem to be offered methotrexate now to "get ahead of the problem", however something that can affect your immune so drastically seems quite a risk. My consultant hadn't a good word to say about Prednisolone. Should we be more worried.
When you have an autoimmune disease that causes damage then you need something that will affect the immune system to calm it down. As a PMR patient, I fear I wouldn't be staying with a consultant who hasn't a good word to say about pred since it is the only drug that works in PMR that we can have in the UK. He may think everything else is better - for most inflammatory arthritides they are. But PMR is different - it is a vasculitis and the DMARDs used in RA are not as good for managing it. Tough sir - your PMR patients need pred.
I read that MTX among other drugs can increase cholesterol levels, I’m not sure how true that is.
It is true
academic.oup.com/rheumatolo...
Ah, that might explain the increase in my cholesterol level. Thanks.
Ho RachelJDH.
My rheumatologist prescribed methotrexate for me so that I could reduce my prednisone i wrestled with myself when making the decision. I did take it and thankfully had no side effects. He took me off the methotrexate after abou 8 months and I stayed on the lower prednisone with no issues. If you do take it know that my prescription said no alcohol or grapefruit. I wish you the best in making your decision !
Thank you. That is very helpful. I am hoping my course will become clear when the rheumatologist calls me in a couple of weeks. It is very useful to hear others experience. X
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