New Here & Hello | Arthritis Information

Hi everyone

I have just joined the forum and wanted to be cheeky and ask a couple of questions.

After 3 or 4 months of very painful backside, tops of legs and arms and chronic tiredness and hardly being able to get out of bed in the mornings I finally decided to visit my GP after I realised whatever it was, wasn't going away on its own.

After describing my symptoms he said it sounded a lot like Polymyalgia Rheumatica (something I had never heard of) and he was going to start me on a very short course of Prednisolone to see how things went.

Well by the next morning after starting the tablets I felt like someone had waved a magic wand over me and sent away the 'nasties' I had lived with for months.

All was well for 4 days when for just 1 day everything came back as before. But then went again by the very next morning and all has been well since.

So, my questions are:

1. If the Prednisolone worked as well as it did almost instantly, does that mean it is almost definitely Polymyalgia or is this drug used to treat a multitude of things? and

2. If it does turn out to be Polymyalgia it is possible to have a 'breakthrough' like I have and then things settle down again even though on Prednisolone throughout?

Many thanks to all for taking the time to read my post and thanks in advance for any advice or insight you can give me.

Thanks again.

Hello and Welcome. Ask as many questions as you want. Most of us had never heard of this Polymyalgia Rheumatica ( PMR ) until we were in pain and desperate for answers, had every blood test and other procedures and over a long time in a lot of cases.

Prednisolone mostly works instantly and this is used as a diagnostic tool to confirm PMR. In my case the pred took nearly 3 weeks.. we are all different. Pred is used to treat a multitude of autimone diseases most commonly Rheumatoid Arthritis and even Asthma ect.

Yes I have had "breakthrough like" pain lots of times over the past 4 years while being on the same dose of Pred. I think its the good and bad days syndrome??? If I try to reduce pred when the PMR is still active ,this is called a Flare, the pain continues til the dosage is uped to get a level of comfort.

Many of us have a love/hate relationship with PRED, BUT for me I opt for quality of Life and to keep sane!! Well try to anyway. Good Luck! Lyn

Thanks for the reply Lyn. Off to see the doc in the morning as I have done my first week on Predisolone so will see what he says.

Thanks again

Hi,
As LynM said most haven't heard of this before dx. I had asked my internist for a pill to "fix" me but it wasn't until my neurologist gave me Predinisone that I was "miraculously cured". 3 years later, I'm on .5 mgm every other day. My symptoms remain in a somewhat reduced form but I am determined to stop the Pred to see what happens.
The pred works wonders. I had an experience which may have been what you describe as "breakthrough". I called my rheumy and he uped the dose which took care of it then I whnt back to gradually reducing it. That may be the same thing with you.

Good luck

Jeff

Hope you are getting some of your questions answered..it is so wierd to get pmr..so many people dont know what you are talking about..and really it affects everyone a bit differently

i have had it for a year..and it definately affects you more during stress...even when you are on the pred...
the pred has all sorts of charming side effects..so we pmr sufferers have a love hate relationship with it..(the jelly belly is one of my least favorite of the side effects!)
but i couldnt even function without it...
good luck and keep us posted
cathiHad_enough_now

Noticed you are located in the UK

email pmrfighters@yahoo.co.uk

We have a new organisation called PMR-GCA UK in embryo state. We also have support groups in parts of the UK. Not enough yet - but hopefully more in the future.

We also run an email support group. There is a website www.pmr-gca.org.uk run by the Tayside Support group with helpful information.

If you do decide to email us - please tell us where you live, broadband or pay as you go and mention that you got the information from this site.

mrs UK
I am only 51 years old and after six months of excruciating and disabling pain, my doctor said she thinks I have PMR. I woke up one day and could not move without stiffness and pain. Has anyone experienced back leg pain down from the buttocks to the back of knees? My groin on both sides of my legs hurt so badly that I could not lift my foot off the ground and pick it up to get my jeans on. My low back hurt so much that an MRI showed I had facet arthritis in my lumbar area. My doctor put me on low dose steroids and I felt immediate relief. When I went off of them, it was a back to the worst pain. I am able to handle fibro,but this effective every aspect of my activities of daily living. I am a very active fit mother of five grown children. In 1994 I was diagnosed with Fibromyalgia when some doctors thought I had symptoms of Lupus. I finally saw a Rheumy and he said I am too young for this illness but based on my CRP blood test which was high(Sed rate was normal range) and my reaction when I take the prednisone, I probably do have PMR. Is it true PMR hits only closer to the age of 70? He wanted me to start out on 20mg. I did my own adjusting and went to 15mg. and now I am doing 10mg. This is all new to me and I had to quit my job at the hospital as a CNA because of the very hard lifting and standing for eight and twelve hour shifts. I want to get down to a low dose of steroids really quickly. Has anyone tried alternative herbs that control the pain? Is there any natural rememdies out there. I hope someone will write me back. Sorry for all the questions. God Bless

Hi Nancy

I will be as brief as possible.....51 is not too young to have PMR. There have been people in the early 40's with PMR. There is no part of the body that PMR does not seem to affect, even the mouth. To get up and down onto the toilet was a major chore for me because of the pain in the back of the legs and the buttocks. I would think that the steroid test would be enough to convince your Drs. that it is PMR. You can get down on the pred to a low dose but be forwarned....you can have some very bad side effects from lowering too fast and also the idea of the pred is to make you comfortable. Your PMR will not go away any faster by lowering the pred.

I am so sorry you had to quit your job. Having had both poly and fibro I would much rather the poly. At least you can get rid of the polymyalgia, fibro you have it for life.

Please take care Nancy and there will be others with more information to follow. Never be afraid to ask any questions.

Pat