new to PMR

Bones, joints and muscles
1

Hello! I have just had my first experience of PMR...or so GP diagnosed. Over a couple of days, I developed muscle pain pain PAIN equalily on both sides my buttocks, groin, hips and thighs and bascially what I would call my "undercarriage" altogether!! Also my upper arms and shoulders.

Pain increased and i could barely walk, sit, bend.etc...

We suspected it was Fibromyalgia and was given tramadol and pregabalin, which had little effect.

Then GP gave me blood tests and results said that I had a very high indicator of muscle inflammation and the symtoms convinced her that it was PMR.

Was given Pred. prescription and the pain dissipated blissfully. Two weeks later am still on pred but can feel the "saddle-soreness" returning.

GP said it was unusual for a woman of 46 to get PMR but not unheard of.

Can any of you wise people help me?

WHAT WOULD CAUSE THE PMR IN MY POOR LITTLE BODY?

WHAT IS IT?

AM I DESTINED TO BE ON PRED. PRESCRIPTIONS INDEFINITEY?

My doctor is great but would value the opnions of folk with real experience.

Regards xx  eek cheesygrin

2

Im sure someone better equiped than me will answer your questions, i have had PMR since Nov 14 and the ache in my buttocks has been by biggest problem, i have got used to it now and try not to let it worry me as that also is not good for PMR. Im being optomistic about coming of the steroids and listening to all the advice on here and certainly taking it slowly seems to be the answer, there are reduction plans which a lot of Drs dont seem to know about and im sure someone will put the connection to them up as i dont know how to do it, Good Luck

3

Currently there is no known cause and no known cure for PMR, and steroids are still the most effective way to manage it.

They don't cure, but they manage the inflammation in the body and for most people give them back some semblance of 'normal'.  The idea is to find the lowest dose which manages your symptoms, stabilise on that for several weeks and then begin reducing the dose slowly.

Your doctor seems to be right on the ball, PMR is generally found in the over 50's, but that doesn't mean you absolutely can't get it at 49 or even 46.  I'd hang on to him if I were you, hopefully his idea of a steroid reduction plan will be up-to-date and this is something not found with the usual GP.

If you look to the right of this screen you will see links to more detailed information on the condition and also some reliable information on steroids.

I hope you have a problem-free journey!

4

Hi Gone Girl and welcome to this forum.  You will find a lot of information here as well as share the experiences and support of all of us in this "club" we belong to.

You are lucky to have a doctor that diagnosed you so quickly. Many on the forum have gone for many months and even years before getting any relief from their pain.  The fact that you responded so quickly to the prednisone is the main indicator of the disorder.

It is unusual for someone your age to have PMR but it seems it is becoming more prevalent, or at least we're hearing about it more often.  

No one has come up with a cause yet but it is known that more people of Northern European decent seem to have it. In some it is hereditary and some of us think ours was caused by stress, either physical or mental/emotional.

As far as "what is it".  Rather than go into a lengthy explanation and I'm a medical person I would suggest you go to the Patient UK North East site (sorry, I'm on my iPad and don't know how to add the link but you can google it). It is a wonderful site with info written by doctors and other medical folk.

No, you are not destined to a life on pred. In fact, I think because of your age and early diagnosis you may have a good chance of going into remission sooner than later. It is a lesson in patience though and if you don't listen to your body, rest and decrease your dose very, very slowly you will yoyo with flares and take along time to get to there.  I believe the stats are 25% of people go into remission (and therefore can be off pred) in 2 years, 50% between 2 & 5 years and the last 25% over 5 years or can be on low doses of pred indefinitely.

There will be many others along with more information for you soon. In the mean time take a look at the discussions and info from the North East UK site.

Take good care of yourself.

Hugs, Diana🌸

5

Welcome to this great forum, though I'm sorry you too have PMR. You are the youngest I've heard so far. I was 53 when I had same symptoms you had back in November.  I had a very, very stressful year and in Novemeber I really had a stressful event that made my entered body tense up for hours. 8 days later I had PMR. 

I felt so scared, alone, not understood, no one to compare notes with, so many odd symptoms, new diet, ... But this forum has been a savings grace.  Go back and look at other posts and watch new ones, so much good support, info, sometimes sad info, but also people to be happy with and for.  

I didn't want to believe doctors when they said could take two years... Still hard to  understand, but you'll hear from others that is can be true. But, have heard of some who it goes "away" in a few months. I hope this for you! 

Hang in and ask questions. This is a great group.

6

I'll go ahead and share more that I expeienced first few months to now... Incase it helps you...

Prednisone 15 mg for week, then 20 mg for 2 weeks, then 17.5 for 4 weeks, and so on...  As per doctor in States (USA). But I'm thinking that was too fast of taper... 

Learned from forum, my pain is still about 70-75% better in mornings, after Prednisone sets in my afternoons my pain is about 50% better.

while on higher doses of Pred I was hyper, couldn't sleep. Lucky to get 2 hours at a time. Sleep 2, up 2-3, sleep 2-3.

a bit anxious, moody.  Still have always had and have same pains in saddle as you out it. Driving car is sometimes hard, sitting on butt bones. Putting on deodorant hurts, squatting, ... Going to physical therapy now, have some relief.

Scary things I expeienced and doctors never warned me...painful hump on back of thoracic spine near neck, it's the Pred. Seriously dry skin and hair, even my nose is dry, sometimes burred vision, throat tightness... NEVER take Pred on empty stomache, though I take with 3 egg breakfast and sometimes includes spinach, avacados, bell peppers, I still have throat issues...think it's acid reflux from the Pred.  At first it was serious chest tightness for 3-4 hours in afternoons.

You might get scared and say, I don't want to be on this drug, but from these experienced people here...Pred is our best friend for time being.

Didn't know my vitamin D was low, so I take 1200 Calcium and 5000 vitamin D-3... Your doc should test your vit D. 

Fear of osteoporosis apparently is real, so Calcium! My doc took me off any possible inflammatory foods, dairy, flour, grains, potatoes, sugar, legumes, so just protein and veggies and fruit if you can, I can't do fruit. Not too much coffee or none. 

To to get in my car I just lift my leg with my arms, but hurts to lift leg in hipflexor area. The pain is frustrating, makes me tired, sometimes I feel depressed, I have pitty parties, I call them. 

Oh and yes, your face might get puffy and round, ugh, and weird fatty tissues under your neck.

These are some things that scared me because I didn't really know... Many told me here to kind of put life on hold, LESS stress, take it easy, knowledge helps, ...

come to us for support.

take care.

  Layne

 

7

Hello gone girl!

I have recently been diagnosed with PMR. My pain seemed to come on pretty suddenly and got to a point within a month that I couldn't turn over in bed by myself!!  My CRP is at 20 but send rate is normal. I started out on 60mg of prednisone and relief was quite swift. I have been tapering down every 3 days but when I try to get below 30 mg. the pain xo ex roaring back. I am so glad that Infeel better but the steroids idle affects are hard to deal with!! Did any one have to be On 30mg.or more for awhile?? It seems like most patients in these discussions are on much lower dosages??? Any suggestions on dealing with side affects like personality change, anxiety, fatigue extreme hunger, etc????

like you , gone girl , I had,any questions about why and I now just decided to accept it and look for answers on quality of life.....  Good luck to you!!!

8

Patti, 

As far as hunger, by removing grains, flour and sugars and potatoes (which just convert to sugar), you will combat hunger cravings!  If you eat protein, good fats (avacado, almonds, walnuts, olive oil, avacado oil, salmon) and lots of veggies, low salt!!! You'll not be so hungry.  I do feel like a horse however eating so much spinach and kale, and my poops, ugh, like a cow, used to be good poops, ha, ha.

When I cheat and eat bread, chips, dessert...I suddenly am SO hungry!! I want more of the bad stuff! Like an addiction!  I do miss cheese, ugh. I'll eat a cheese burger maybe once a month or longer. 

I just oust get tired of chopping and cooking, even though veggies are easy.  Today I did eat a processed frozen dinner, Indian food! But didn't eat the rice and poured the chicken curry over kale and spinach. I feel very satisfied.

hope that helps! So, lots of water!!! I do best when I have a counter to count, but still hard to get 8 8oz glasses a day. 

 

9

If you really cannot get below 30mg I think your doctor needs to be sure it is PMR rather than any of the other causes of the symptoms because classically PMR responds well to 15-20mg - which is the reason that is the recommended starting dose. Many things would respond to 60mg which is the dose used for GCA.

There isn't a lot to be done for most of those side effects but, as Layne says, cutting carbs drastically may help with the extreme hunger - pred changes how our body metabolises carbs causing weight gain. If you cut carbs right down the cravings often reduce as there are fewer swings in your blood sugar level.

10

In order:

No-one knows - genetics (Scandinavian genes don't help) is part of the cause, the rest is a range of things that may affect the immune system and eventually it goes into overdrive, attacking your body tissues because it doesn't recognise them as "self".

It is a vasculitis - blood vessels are inflamed and this affects blood flow to the muscles. There are probably other things going on too that lead to the fatigue.

No, as someone else has said some are off pred in a couple of years though some need a low dose for a long time, occasionally for life. I'm on 5mg at present and pretty much back to normal activities. But I have had PMR for at least 10 years though it wasn't diagnosed for 5 years. There are quite a few people on the forums in their 40s though most struggled to get a diagnosisat that age - I did at 52! You are lucky in that GP.

You start at a moderate dose (15-20mg) to clear out the inflammation but then you reduce slowly, in very small steps is best, to find the lowest dose that gives you the same result as that starting dose. It may be well below 10mg if you are lucky and then the side-effects are far fewer. The trick is not to rush or try to force a reduction - PMR came when it wanted and will go into remission when it wants and nothing anyone can do will change that. You can help by resting and pacing your activities - your body is intolerant of acute exercise and if you do too much it can take days not just hours to recover. Know your limits and stick to them however much others (or you yourself) tell you you can manage a bit more. When it is done it's done - too late! 

Google the spoons theory by Christina Miseriando - a very helpful allegory!

11

Thank you all so much for your answers. There is a lot of information to take in.

Over the weekend I think I was feeling the symptoms of the fibromyalgia. THe fatigue kicked in and today I shamefully woke, from a deep sleep of disturbingly detailed odd dreams, at 3pm.

And boom.... the polymyalgic saddle-soreness and a very befuddled head and hungry body.

I have a blood test tomorrow morning and GP on Thursday.

Does anybody else have fibromyalgia and poly?

Is it possible?    

 

12

Yes it is possible but the pains - I'm told - are different and certainly only the PMR pain responds to pred. Nefret on this forum has both, I'm sure she'll comment. 

In PMR you may have raised ESR (sed rate) and CRP - although 1 in 5 patients don't. They aren't raised in fibromyalgia.

13

Yes, I've got both and for me the pain is quite different from one to the other.  PMR is a deeper pain in fewer places, while the Fibro pain is

a more surface touch sensitive pain and is widespread.

No pain killer works fully in either case, so I don't tend to use them as routine, I keep them for the really bad days when they do at least take the edge off.

That's how it is for me - I'm sure someone else will fell it quite differently as that is how we are made!