PMR

[nancyannehanson]

Recently diagnosed with PMR seeking Insight knowledge understanding. Please share your stories or any knowledge you think would help me learn and grow thanks everyone.

[PMRpro Ambassador]

It would be easier if you swapped a book before bedtime for wandering around the site and read older threads!

Plus you could go to this site and thread:

patient.info/forums/discuss...

where you will find a load of links to reliable sources of information.

Then come and ask us specific questions.

I'm saying this because I and a few others on here could write for hours - and still not tell you what YOU need to know.

But the basic thing you need to know now is: just because you feel better on pred DON'T go an catch up on everything you haven't been able to do for however long! Your muscles remain intolerant of acute exercise and if you do too much the PMR will turn round and bite! You need to learn to pace (there is a link there) and rest when you need to. It is better to rest BEFORE you get tired and hit the brick wall.

But just ask questions that we can then give a specific answer to. Where are you? If you are in the UK there may be a support group near you.

[nancyannehanson in reply to PMRpro]

Thank you for your response. I live in Greenville South Carolina USA. I will follow through on your recommendations. Turned 65 in October BAM hit hard with this. Good news, medication is helping. However, your right again, I am manic doing things I shouldn't.

[PMRpro Ambassador in reply to nancyannehanson]

Well DON'T!!!!! Or you will find you are asking why the medication ISN'T working!

It will get better, you WILL be able to do loads more - but you first have to get to feeling well and then you have to work your way back to almost normal slowly. But it can be done. I've had PMR for over 12 years (very unusual, only 25% of patients hang on to PMR for more than about 6 years max.) but I have a pretty much normal life as long as I take the right dose of pred. That's the other secret - don't try to rush down the dose and get off quickly. You'll just have a relapse!

[nancyannehanson]

Wow, I did this.......the relapse was awful......took almost a week to recover. I am scared, seems silly to say........been in health care my whole career life......never heard of PMR until these few weeks of hell. Seriously, I realize now I was suffering with this for a few years. Chalked it up to aging. I went to see an orthopedic surgeon believing I need shoulder surgery.......I had a hip replacement at 55, I now wonder was it necessary.

[piglette]

Are you taking vit D and calcium as steroids can cause bone problems as a side effect? Also you should have a Dexascan to check your current bone density.

Meanwhile don't overdo things and rest.

[nancyannehanson]

Had bone density and found I have osteopenia and vitamin D and calcium made me vomit I just don't know what else to do about that?

[PMRpro Ambassador in reply to nancyannehanson]

Try other forms of calcium, some people don't seem to tolerate calcium carbonate but there are other salts such as calcium citrate (costs more of course!). In the meantime make sure your dietary calcium is good and get some just vit D tablets. Someone was telling me they can't take calcium either and have been offered injections - not sure if that is the calcium though, I suspect she was confused and it is an infusion instead of alendronic acid.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

As PMRpro says, do as much reading up on PMR as you can find - and digest! Then come back to us with any specific questions, of which I'm sure you'll have many no matter how silly or mad they may be.

There's a wealth of knowledge on here, and most people will have been through what you are going through.

PMR is life changing, and the one thing you need to do is stop acting like Superwoman and learn to take things a little slower. Not always easy, but your body needs it, and will react if you don't rest now and again.

You will get better, but it's not like lots of illnesses - a few weeks on tablets and everything's fixed. This is a long term business, and that's how you need to approach it - if you try to get off the tablets too quickly before the illness has burnt itself out you'll just prolong the procedure. Just take a day, or a week at a time and you'll get through.

Good luck and look forward to hearing more from you.

[SusyTe]

Hi Nancy. I am new to this too and was recommended to read this book - a good starting point if you haven't already.

amazon.com/gp/aw/d/15335235...

Hope that link works. X

[Marcy47]

Hi Nancy,

I have had PMR for 15 months, hit out of the blue at age 68. Currently on 10mg pred reducing to 9.5.

I also have a nodule on my thyroid found 4 yrs ago, recently had a needle biopsy done on it, waiting for results.

Try Vitamin K tablets, they help your bones absorb the calcium you eat.

Good luck on your journey with this disease. x

[Marcy47]

That should read Vit K2 tablets. x