Pmr

[diduck]

I has pmr quite a few years ago and during lockdown has appeared again. Dr has said to take steroids but to date I have had no blood test to confirm if it has returned or of any other problem. Tops of arms are horrendous with pain, can’t sleep, but last time I had it the whole of my body suffered and inflammation markers were very high. Do not want to use steroids unless really necessary doe to the weight gain, but I really need confirmation as to what it is or what else it could be.

[SheffieldJane]

You may have caught it early. I would get on top of that inflammation, you know how it gets. Blood tests aren’t full proof. The symptoms are key, as is a fairly swift, positive ,response to Prednisalone. This time you could do the very low carb diet that people swear by and don’t gain weight at all. It does sound like a relapse of PMR. How long ago was the last episode?

I have developed GCA after 4 years of PMR and getting down to 3 mgs, so I can commiserate. That is also a danger of not treating PMR - although I was pretty careful. If Pred doesn’t help then the chances are it is something else. So at least you’d know.

[diduck in reply to SheffieldJane]

10 years ago , I recently has pains in hips then back but now arms are so painful.

Original pmr was in every muscle of my body and could not move so this is not anywhere near as bad a before.

Just not happy with steroids, how about cbd oil .? And how long does that take to work ?

[SheffieldJane in reply to diduck]

I haven’t really heard anybody on here say that CBD oil has really helped. Someone may respond though. Believe me, I wish there was an alternative. 10 years! What a blow.

[MrsNails in reply to diduck]

Hi Diduck

Sorry to hear you’re suffering again, if you look in the Search Function, put in CBD Oil then Filter it to our Group you should find some discussions.

How long were you on Pred last time? Why are you reluctant to take it again?

Best Wishes

MrsN

[diduck in reply to MrsNails]

Mainly due to the weight gain moon face trunking etc

Was on it for over 4 years

[MrsNails in reply to diduck]

I can understand your reluctance to risk the weight gain, l’ve recently lost 25lb in weight & l look like a different person, l’m on 12mg Pred & have still lost weight though l was back on 15mg when l started.

Low Carb is the way forward & cut out as much added sugar as you can, it doesn’t have to be too drastic, though not everyone will agree, l still have an odd potato or spoonful of rice but no pasta or bread.

I had to lose the weight as l was threatening Type2 Diabetes but Sugar is my weakness, a Mug of Tea with Two Sugars is my idea of heaven, so l halved my intake by changing to a cup & then gradually reduced. I knew l’d throw it all in if l couldn’t have a decent cuppa in a morning but l found my way & it’s working....

I found a lot of great recipes on the Diabetic Website, l didn’t want to start replacing foods l liked with strange alternatives but that’s just me 😉

But don’t let the PMR get worse before you realise Pred is the only realistic treatment.

Best Wishes

MrsN

[PMRpro Ambassador]

Trying the pred will be a good indication - insofar as anything is. The blood tests don't say it is definitely PMR, just that there is a inflammation present but your symptoms tell you that anyway. PMR will respond to pred, if there is no improvement at 20mg then it is likely it isn't PMR. Wait long enough and it is likely to get to the rest of your body - although everyone I know who has had PMR twice says the two episodes were different in every sense. Leaving PMR untreated does leave you at risk of it progressing to GCA - and then you would need much higher doses of pred.

If you want to reduce the likelihood of weight gain, cut your carbs when on pred, especially processed carbs and all added sugar. I assure you it is easy enough to gain weight with PMR alone due to the inactivity, but cutting carbs does help and there are many on the forum who will tell you that,

[tangocharlie]

Could it be frozen shoulders or something else going on in the shoulders?

[diduck in reply to tangocharlie]

Not sure dr not asking to see me just decided over phone my pmr back , feels worse at night where I cannot lie on either arm feels like someone knifing next in the muscles as though things are twisting inside my arm and trying to lie on back is just as painful , eases slightly during the day so get a couple of hrs when I can cope

[nuigini]

If you haven't done anything to cause the pain i.e. heavy lifting, exercise, etc. it sure sounds typical of PMR for me. My first major symptom was shoulder pain (wrongly diagnosed as bilateral torn rotator cuffs) followed by upper arm pain that put me in a lounge chair to sleep at night. The pain was excruciating in bed.

[diduck in reply to nuigini]

Yes night time excutiating but my last episode over 6 yrs ago was pain in every muscle, arms and hands were swollen and could not stand anything touching my arms , this isn’t quite that bad yet

[nuigini]

If it gets worse and other muscles come into play I guess you'll have your answer. I hope it doesn't.

[diduck in reply to nuigini]

Fingers crossed it will do one ☝️

Started in leg and hip moved to back now arms hopefully go up and out

thank you for your thought

[Purplecrow]

One other thought...

...my PMR symptoms have changed over the years. Originally I could not raise my arms to shoulder level, could not turn over in bed, pull up blankets, etc. then prednisone was miraculous, for a while...

Until I began "tapering"..up and down, remaining in some degree of pain most of the time.... Getting down to 2 mg., before last major flare, and finally recognizing there is no magic bullet with this disease.

In past 3-4 years, my hips and lower back have been the site of most of my pain.

But.. drumroll....wait for it...shoulder pain has returned! Something so simple as walking my dogs on leash, and riding my recomb bike with handle bars...and pain is back.

Long story short...PMR is a moving target...changes for me each time I need to mess with my pred dose, or experience a new stressor, Try new exercise routine, illness, etc.

So here I am now... settled at 6 mg pred, ...have no dastardly side effects (yet?), and use tylenol for breakthrough pain.

As others say, control your carbs, and you can manage the weight gain risk.

Meanwhile, good luck with alternative treatment options...let us know if you find something that works.

Kind regards, Jerri

PMR diagnosed 2013

[PMRpro Ambassador in reply to Purplecrow]

"Something so simple as walking my dogs on leash, and riding my recomb bike with handle bars...and pain is back"

That is what pokes my myofascial pain syndrome problems - less so the PMR itself, its shoulder effect is different.

[Purplecrow in reply to PMRpro]

I see my doc Friday, maybe we can come up with alternative treatment. Any suggestions for m/f pain syndrome?

[PMRpro Ambassador in reply to Purplecrow]

I get local injections, sometimes steroids, sometimes a muscle relaxant. Think the steroids tend to work better on the fascia which surrounds the muscle and for me is what causes the tender sensation. The muscle relaxants are aimed more at the trigger points I think. The previous pain specialist used to do manual myofascial release - which I really liked. Hurts as it is being done but the effect is great. I also get therapeutic massage - same applies, you often feel worse before you feel better since the cytokines are released from the muscle fibres at the trigger points and it feels like a flare of PMR.

[Purplecrow]

Thanks, I'll see if I can get some Referrals for tx. The current status is really not good, leaving me with lots of sit on my butt time. Not satisfying.

💜🙏🏽