pain back so soon | Arthritis Information

Hi everyone just wanted some feed back on what is going on with me as i am new to pmr. I started to take steroids at 15mg 2 weeks ago the relief was great, energy levels really up and pain very bearable after ten days however the pain has come back perhaps not quite as bad and the energy levels are ok but i have been told to drop my prednisone today to 10mg obviously feeling abit worried any suggestions as to why the pain is back so quickly,

anyone else experiencesd this? what die you do?

regards lynseylou

lynseylou

Go to the website, www.pmr-gca-northeast.co.uk and read up and download the British Society of Rheumatologists Guidelines issued June 2009 on Diagnosis and Treatment of PMR. You need knowledge fast. If necessary take them to your GP and ask if s/he has seen them.

As you are located in the UK, also look under Support Groups on that website, there might be one near where you live.

A drop from 15mg to 10 mg in two weeks is too fast and if you are still in pain at 15mg, it should be either upped to 20mg or left alone.

Have you been to see a Rheumatologist or is it just your GP treating you?

I am Mrs UK on this site and mrs K on Pats experience and part of PMR&GCA UK North East Support.
hi mrs uk my names lynn, i am based near manchester. Been seeing rheumatologist since november first thought i had ra but had a really good response to kenalog injection so he changed the diagnosis, he did say though that it hadnt crossed his mind that it may be pmr because i was so young , im 53 it is the rheumatoligist who has recomended these drops in the prednisone i am supposed to stay on 10mg for 4 weeks then drop to 7.5 after that. Did ring my gp on tuesday to ask if i should reduce dose and he said yes as per on my prescription. I have been looking on theses sites ro try to gain knowledge as neither the rheumatoligist or my gp has filled me with great confidence just feel very frustrated.

kindest regards lynn

[QUOTE=mrs UK]lynseylou

Go to the website, www.pmr-gca-northeast.co.uk and read up and download the British Society of Rheumatologists Guidelines issued June 2009 on Diagnosis and Treatment of PMR. You need knowledge fast. If necessary take them to your GP and ask if s/he has seen them.

As you are located in the UK, also look under Support Groups on that website, there might be one near where you live.

A drop from 15mg to 10 mg in two weeks is too fast and if you are still in pain at 15mg, it should be either upped to 20mg or left alone.

Have you been to see a Rheumatologist or is it just your GP treating you?

I am Mrs UK on this site and mrs K on Pats experience and part of PMR&GCA UK North East Support.
[/QUOTE]

why can't i find that i the site?? ... should i be looking on the left hand side part of menu on that page?Winnie - I hope this is correct as I am going from memory: on the left hand side of the homepage there is a list of headings which link to various things. One is "useful info", click on that and it takes you to a list of various articles including the guidelines and the articles written by various patients.

Lynn - those drops are crazy for a patient with PMR and a rheumatologist should know better. The steroids do not cure the inflammation as is the case with other inflammatory ailments where steroids are used such as asthma and gastrointetinal problems. I was told to do the same by a rheumy and was in some pain at 10mg but I could have lived with it, below that it was far worse and within 48 hours of stopping the pred (as per instructions) I was worse than before the steroids. You have to get down to the lowest dose that controls the pain and work down VERY slowly from there. NOT 5mg at a time, not 2.5mg at a time - if you are OK down to 10mg you then look at a reduction of 1mg at a time - and the reduction should never be more than 10% of the current dose at any time whatever dose you are on. That's not from me, that's from top rheumys in the USA who have written textbooks about rheumatology and PMR.

I started with PMR in my early 50s (possibly even earlier) - and the guidelines have been revised to say it should be considered in anyone over 50 with the appropriate clinical picture. I believe too many younger patients with PMR have been fobbed off with "it's all in your head" - there are a lot of people with PMR out there who are atypical and not being helped.

MrsE

Hi Lynn,

MrsE is right, it's on the left-hand side under "useful information". Here's a direct link to that page (see below). BSR guidelines should the first one listed. Since it's a .doc or document, you'll need to have MSWord installed on your computer... which most do.

Useful Medical Information:
http://www.pmr-gca-northeast.org.uk/useful_information.php

RickF2011-03-10 15:16:11lynseylou,

I wonder if your pain is being caused by the weather and is possibly just temporary? I recently had a flare and had to increase from 5.5 mg to 15 mg per day for 3 days, then down to 10 mg for 3 days--I felt great the first day but then, "surprise", even while taking 15 mg, I did have a painful day--I think it was brought on by the weather, an incoming storm front with lots of rain. So strange! The next day, I was fine. Of course, who knows for sure what caused it. What I'm trying to say is, this disease is totally unpredictable.

Still, if your flare-up has gone on for longer than a day or two, it doesn't seem like a good time to start tapering the prednisone.

Best,
freesia
My previous rheumy said the same thing, I was also 53, that she thought I was too young for PMR. My new rheumy has never questioned my diagnosis of PMR.

Freesia may be onto something with the weather. I also have fibro & osteoarthritis along with PMR and when the weather fronts move in I am literally down for the count for several days some times. Every muscle from my knees up ache and no amount of meds will help. I just lie down and wait it out.

When I was first dx'd with PMR I hadn't seen a rheumy yet, was dx'd with my help by my pain management doctor. He did the same thing your doctor is doing. Dropped my 5mg at a time over a short period of time. The symptoms came back fast and furious and at my next visit I was crying from pain. I was back to 15mg until my first rheumatologist visit. Even tapering 2.5mg was too fast for me and I ended up at the emergency room. Now only drop 1mg at a time.

There is also the consideration that, when you take the steroids and have a good day, the most likely thing is that you go and over-do things - like the cleaning that you haven't been up to doing, the ironing, walking further than might have been a good idea. It may not hit you the next day - but often if you look back on what you have been doing there is a reason for feeling bad. You have to remember that this is a chronic disease process that is being managed - not cured - by taking steroids. The fatigue may not go away and PMR ebbs and flows quite a lot within the framework of taking the pred. You will continue to have good and bad days - or good and bad weeks. Nothing is predictable with PMR - it has a mind of its own. You judge how you are over a period of time that is longer than a day or two.

MrsE

Hi all

Mrs e think you have hit the nail on the head with over doing things. Just had to get out in the garden sunday and do some weeding was in pain afterwards and seem to have gone downhill since. I am still trying to come to terms with not being able to do things normally and if i feel ok i just go ahead and do things Will have to try harder to slow down.

Kindest Regards lynseylou

Using those muscles if they are still inflamed will have done it probably - get a gardener!!! I knew I didn't want another house with a garden - I love being in the garden but not the pain associated with it! Even pulling a few weeds made my hands feel like fireballs and as for my back - we won't even go there! God's own garden does nicely and we have an enormous balcony with a view of the mountains - I'll stick with that!

Slow down - do a bit and stop. Just because you feel good doesn't mean you can do more - it will catch up with you. Do the bit you can and celebrate that. In time it will be better - but patience is the name of the game. Note what you did and felt OK - next time try a bit more - not a lot more. But what you can manage will change from day to day at present. One day you will be much more stable.

MrsE