Newly diagnosed with PMR, what results to expect from prednisone
Posted , 9 users are following.
A month ago I saw my GP for a flare up of my asthma and also muscle pains and stiffness. She prescribed me 40mg of prednisone for a week and said if I also had PMR then the symptoms would improve.
Well I had a complete recovery the day after my first dose, I could say miraculous. As asked I saw my Dr a few weeks later, the symptoms were returning and she started me on prednisone 15mg a day. Obviously I wasn’t expecting such a great result on a lower dose, but my questions are -
1) How much do your symptoms resolve before you reduce the dose?
2) Do they go away, or do they just get better?
3) What happens with a ‘flare up’?
Thank you
0 likes, 16 replies
EileenH Elizamc
Posted
She shouldn't really have used 40mg to "diagnose" PMR - other things will respond quite well too! 15-20mg is a much better testing dose but you are where you are.
1) What sort of result have you got with 15mg? If you had such a good result with 40mg it is to be hoped you will get something similar with 15mg - just possibly not so quickly. Did you have raised ESR/CRP levels? You take your starting dose until the symptoms seem pretty stable - and the ESR/CRP have fallen as low as they are going to and are stable there. Then you start to reduce SLOWLY and in small steps to find the lowest dose that gives the same result. If pains come back you should go back to the last effective dose, wait a month or so and try the small reduction again. Rinse and repeat. Some people get quite low relatively quickly - others may take far longer. It all depends on the "shape" of your PMR.
2) It depends. Some people experience a total or almost total relief of symptoms. Others get more like a 75% improvement fairly quickly and that is what is looked for by medics. I found I got that in about 6 hours (but I had never been on pred before) and then the other pains improved slowly over the following few months. The foot and hand pain and the hip bursitis were slowest to respond but they did eventually go away. I have had flares of the hip bursitis since - but a steroid injection or two sorted it very quickly, injections for that are far more effective than oral pred.
3) A flare can be due to reducing too far or too fast. Or it can be due to the underlying autoimmune (a/i) disorder that causes the symptoms we call PMR becoming more active. Either way, it is due to having too little pred present to manage the current amount of inflammation being produced so it mounts up and leads to pain and stiffness and manifests as a return of your symptoms.
But pred is NOT a cure - all it can do is manage the inflammation and allow a decent quality of life until the underlying a/i disorder burns out and goes into remission. For 75% of patients that happens in somewhere between 2 and 6 years, some of us have it even longer, about 5% for life. You can't tell in advance who belongs to which group - but for about half it takes about 5 years-ish!!! Don't believe anyone who tries to tell you theirs went away in 6 months. It didn't, it was something else. And don't let your doctor try to rush you off pred - that will only result in a return of symptoms and make getting it under control again harder. But most people are able to manage their symptoms on under 10mg, for many, well under 10mg. But everyone is different so there is no way to say what you need. Some need more, some need less, some need it for a couple of years, some need it far far longer.
Elizamc EileenH
Posted
Thank you for your very helpful reply Eileen! I had a raft of blood tests but don’t know the results yet. In fairness to my GP when she raised the possibility of PMR I googled it and it all my symptoms were listed, I’d almost ground to a halt.
At my next meeting with my GP she will review my progress and consider reducing to 12.5mg, the next reduction would be to 10mg and thereafter 1mg monthly. All reductions depending on my symptoms and progress. She said it will be a slow process.
Its useful to know that with a 75% improvement in symptoms its okay to reduce the dose. I knew that I wouldn’t get the same result as I did on 40mg, So your ‘benchmark ‘ is really helpful. 😊
pauline36422 Elizamc
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Elizamc pauline36422
Posted
pauline36422 Elizamc
Posted
not a lot really plenty of wate,r glass every morning glass before bed and a couple through the day
I know this isnt much compared to some. but I never drank water at all b 4 pmr. only a couple of wines at the weekend. I am now down to 2.5 mg with a couple of flares in between. I am really only left with arm pain but I don't think its pmr, as Eileen says 5 years down the line the age aching thing will have kicked in a little. at 75 I would agree, not that I want to lol but that's life
so have a good journey and don't forget it will eventually go x
EileenH Elizamc
Posted
The thing many people find helps most is learning to accept where you are, that fighting it won't help but just slow you down and make you miserable when a flare results from trying to do too much or reduce too fast.
Google "gorilla in the house by Batsgirl" and "the spoon theory by christina miseriando" - work out how many spoons you have and stick to it!
Elizamc EileenH
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EileenH Elizamc
Posted
So are most people with PMR - but honestly, it is worth learning how to! It isn't "giving in" to the disease, it is being realistic and learning to work round it. When you do that you can have a pretty normal life.
Examples are requesting airport assistance when travelling, or using the lift not the stairs, or getting in a cleaner/gardener to do the heavy stuff - which leaves you the energy to do the things you want to do without having wasted all your spoons on walking/climbing stairs/digging a hole so you can't enjoy the objective.
Elizamc EileenH
Posted
christophe38948 Elizamc
Posted
Four days after start (15mg/day) my problems ended but the Dr. kept me on Pred for 6 weeks (?). After that the dose was reduced to 12.5mg/day and from the next month was 10mg/day. Since that day I am going down 1mg/day per month. Presently I am on 4mg/day.
After the initial first four days pain went away and never returned. No other problems were observed so far.
Good Luck!
CW
Elizamc christophe38948
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Anhaga Elizamc
Posted
Elizamc, I don't want to sound like a wet blanket, but you need to know two things. One is, we are all different. I hope you do as well as Christophe. The other thing is at about 7 or 8 the adrenal glands have to start to contribute their share of cortisol again, and for some of us this can slow things down as we wait. The body needs a certain amount of cortisol to function and until the adrenal glands are up to speed it's wise to reduce slowly. Again, we are all different and some will manage this stage more easily than others. All the best!
Michdonn Elizamc
Posted
Elizamc, good luck on your journey, you will get some very good advice on the forum, it has helped me tremendously. This journey is not a race, take it easy. I am a very active person, think positive and try to keep smiling. 🙂
Elizamc Anhaga
Posted
Elizamc Michdonn
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