PMR Future

[Amanda1234]

I was diagnosed with PMR in 2013 at the age of 46. I know this is extremely young but after ruling out other illnesses, (I was initially treated for Fibromyalgia, with no success), my doctor prescribed 20mg of Prednisolone. Within 24 hours I was fully mobile and pain free! I'd had to take time off work and returned in July for 2 days a week. I'm currently on 3 days now but still get 'wiped out' and have to rest up for 1-2 days. Unfortunately, I am in the process of reducing my Prednisolone (at 9mg at the moment) and the pains, stiffness and mobility are increasing again. Is this what I have to look forward to for the rest of my life, being tired, in pain and immobile? What can I proactively do to get rid of this?

[suzy1959]

I wish I knew of something that could get rid of this!!

It took 2 years to properly diagnose me because I was 52 years old when PMR chose me. Now, 2.5 years later, I am still struggling with it and still can't get below 11mgs Pred. without having a flare. I have had pain everyday all the way through. Some people do seem to get more relief from the Pred. than I do, and lots of people manage to get onto much lower amounts of Pred. sooner than me. The message hare is that we are all different and have different PMR journeys. I am also learning the hard way that most of us need to reduce the Pred. very carefully and can only go as far as the PMR will let us- i.e. you might have reached the point at which the PMR inflammation is breaking through and may need to stay at this dose for a while before reducing further. On the other hand, it might be withdrawal pain that you are experiencing which means you need to reduce more slowly. Good Luck!

p.s. For the vast majority of people, PMR does go away.

[PMRpro Ambassador]

Proactive action? Go back to 10mg if you were fine there and stick there for a while. I was a bit older than you when my PMR started but not a lot, 51. I had 5 years with no pred (not very nice) and have had 5 years with pred (somewhat better most of the time).

Younger patients tend to be atypical - and I suspect also take much longer for it to burn out altogether. The Bristol UK group under Kirwan suggest 6 weeks 15, 6 weeks 12.5 and then a year on 10mg. If you were diagnosed middle to end of 2013 you'd still be on 10mg. I couldn't get below 10mg for the first 4 years of pred without the symptoms returning. Finally last year I cracked it and am now down to below 5mg for the first time ever. I tried 3mg and was fine for nearly 2 months and then the bicep pain reappeared. I've had a few days at 5mg and am now trying 4mg again. After 10 years the PMR is still there - in my case it definitely isn't withdrawal pain as it takes me about 6 weeks to reduce by 1mg!

Rushing it will just lead to a return of the problem, being off work again and yoyoing the dose which in the long term just makes it harder and harder it seems.

[Amanda1234 in reply to PMRpro]

Thankyou for your invaluable recommendations. I have now gone back to 10mg and feel well enough to load the washing machine e, do the washing up and even take the Hoover round! (My husband had taken on the household chores because I struggled so much.) I've printed and read the Kirwin article that you posted on another message and will pass this to my doctor. AND I've purchased the FMR book by Kate Gilbert that should arrive today and will be read over the weekend.

I'm so glad I found this site. Thank you.

[Amanda1234 in reply to PMRpro]

Thankyou for your invaluable recommendations. I have now gone back to 10mg and feel well enough to load the washing machine e, do the washing up and even take the Hoover round! (My husband had taken on the household chores because I struggled so much.) I've printed and read the Kirwin article that you posted on another message and will pass this to my doctor. AND I've purchased the FMR book by Kate Gilbert that should arrive today and will be read over the weekend.

I'm so glad I found this site. Thank you.

[Pipistrelle]

I was 52 when diagnosed and it took me almost exactly 2 years to reach the end of steroids but also had difficulty around the 7.5mg and below point. Every one of us is different (which is why it is so annoying that so many doctors treat this as a disease that is the same in all people). I always struggled with reductions and would take 3 weeks or so to begin to settle but over time I realised this was indeed withdrawal -- bodies are different in how they react and I just had to patiently ride it out. I also had to spend weeks and weeks at the point of 1mg or less reductions. Contrary to what many doctors say, many of us are not pain free except at the highest pred doses.

It is only now, 18 months being off steroids, that I really have gradually returned to having reasonable flexibility. I was still very stiff for months and months -- Kate notes this in her book, that it isn't like you end the steroids and are back to the previous normal. PMR is truly a slow burning illness and takes its time (hopefully) going away. What I learned was that we need to respect (though hate!) the illness, listen to our bodies, have patience, stay positive if at all possible, know that we are all different and what the docs -- who mostly have no personal experience at all of this condition -- say, is a very general and often incorrect view of how we will manage and what we will experience.

[Amanda1234]

Thank you to everyone that responded. When I posted my message I was starting to feel a failure as I was reducing the steroids at the rate recommended by the doctor, but I seemed to be failing as it was getting harder to move around. From your responses I now realise that the regime was too fast for me and after reading a medical article posted on another message on here (sorry I can't find it now as I'd like to thank them), I have upped my steroids to 10mg (from g) today and I already feel so much better. Thank you.

[PMRpro Ambassador in reply to Amanda1234]

So many doctors will write "patient failed steroids" in the medical notes. NO! You, the doctor, failed the patient because you assumed too much. Every case of PMR is different and every patient reacts differently to the pred - but even then if you, the doctor, go too fast with reducing the pred then EVERYONE will "fail pred".

PMR is NOT the same as other illnesses treated with pred - it is a chronic smouldering disease with no other option for management. They wouldn't tell an RA patient to stop taking their DMARD because they have no symtoms while taking it - it is exactly the same for us. Pred is our DMARD.