3 years into PMR

[Weeko64]

Hi , all I just found this site and reading the post on how it affects people and the treatment is right on point from what I experienced in my life with PMR.

I was diagnosed after losing 30lbs in three weeks and low grade fever for over a month.

The pain in my shoulders hips and thighs was so bad I was hospitalized .

My CRP levels ranged between 90 and 175.

The hospital got me in with one of the best rheumatologist in the area who normally has almost a year wait two weeks after being discharged.

I have also had 3 muscle and nerve studies which show problems with my peripheral nervous system. The studies show the problem getting slightly worse over time.

My doctor has a pretty good handle on controlling my PMR but it’s a up and down battle with adjusting prednisone when symptoms get worse.

I always have some pain but for the most part it kept to an annoying pain level with 3 to 5 mg.

I have found if I avoid stress ,don’t over do physical activities and get plenty of rest along with a positive attitude is the best way to deal with my condition.

[DorsetLady PMRGCAuk volunteer]

Hi,

“I always have some pain but for the most part it kept to an annoying pain level with 3 to 5 mg”.

May I suggest you might find it better if you had slightly more than 5mg - the idea is to find the LOWEST dose than controls your symptoms - not go below, and then have to raise the dose to combat problems.

I think we’d all agree with your final sentence, but sometimes a little more Pred is required as well.

Although males do seem to get through PMR better than females, for most 3 years is only half way through, so maybe you are being a little over ambitious at the moment.

A slower taper like the one below, may also help -

healthunlocked.com/pmrgcauk...

[Weeko64 in reply to DorsetLady]

Thanks for the info. I do taper slow about .5 mg in a month.

I am trying to stay a 5mg or below I would rather deal with a little discomfort than the side effects of prednisone when I get above 5 mg.

I recently stepped down to a mid management position at work to relieve my stress which has helped a lot.

Before stepping down I was responsible for over a billion dollars a year of construction.

Now I am 2nd in the chain of command so I’m not stressed near as much when things go bad on the job I can kick up to the boss and I’m felling much better.

[DorsetLady PMRGCAuk volunteer in reply to Weeko64]

Good to hear you have managed to shelve some of the stress - that should help improve things.

Although it’s your choice entirely, please remember that continued inflammation due to Pred being too low can cause its own problems. It’s sometimes a very fine balancing act.

Just as a matter of interest what side effects when over 5mg in particular are causing you problems?

[Weeko64 in reply to DorsetLady]

Bone density loss and problems with peripheral nerves .

Balance issues , intermittent sharp pain sometimes like needles in my back and muscle twitching in a muscle for weeks at time.

The doctors say I have other unknown autoimmune things going on they don’t know what’s going on but because it comes when my Pmr is acting up they feel it’s autoimmune related.

I was hospitalized for a week and two weeks after being discharged I was back in for a month.

They tested everything, blood work, ultrasounds MRI , nuclear scans, I have had every test they got including test for contaminated well water ,toxic mold exposure and anything you can imagine.

For the most part I am much better and it doesn’t slow me down much.

[DorsetLady PMRGCAuk volunteer in reply to Weeko64]

Ok,

As PMRpro rightly says (and she really is the PMR expert) even a couple of 2mg would still keep you below the physiological dose, and may make a lot of difference to your pain, without adding any further side effects.

However, as I said, it’s your choice....just make sure it’s the right one.

[PMRpro Ambassador in reply to Weeko64]

Have you ever discussed your muscle problems, balance, twitches, pain, with a good sports physiotherapist or therapeutic massage therapist? I have similar problems, especially when my PMR is playing up, and they are due to muscle spasm in my back which is due to myofascial pain syndrome. It is caused by the same cytokines (inflammatory substances) as PMR except instead of being systemic they are concentrated in trigger points of hardened and spasmed muscle fibres which irritate nearby nerve and cause referred pain and other problems.

The balance thing could be your muscles being affected by the PMR - it is common in early PMR and often improves once you are on the right dose of pred. It did for me and others - we could fall over our own feet and needed a handrail to manage stairs.

Or it is possible you are hovering on the edge of GCA and your ears are affected. A study done in the UK has just confirmed that ears can be heavily involved in GCA:

link.springer.com/article/1...

In my experience the average doctor is hopeless at muscle problems - even orthopaedic specialists can get it utterly wrong, one private one told me my low back problems were wear and tear and I would have to live with them. This was in the wake of whiplash injury - but he couldn't identify he hadn't fully dealt with it. The local hospital guys managed to get it right. Their approach caused a different problem because of a rare drug reaction but I was handed over to the Pain Therapy unit and physiotherapists - much slower but very effective.

I think looking at a simpler and mechanical approach might help you - it might not, but you can only try. And even if it is only a partial success - every little helps.

[Weeko64 in reply to PMRpro]

Yep I had 8 different specialists early on the neurologist seemed to think when I was on high dose prednisone that it was causing nerve issues.

I’ve been a fitness guy my whole life .

The sports medicine folks found old gym injuries and did surgery on both shoulders to remove major bone spurs, part of my collar bone and repair tears and placed 3 pins to reconnect three complete tears of tendons to muscles . Had about 6 months of rehab.

Everyone agrees the repairs are fine and not likely to be the main cause of pain.

I do exercises to keep my shoulders

In shape as directed by my physical therapist.

You are a wealth of knowledge I appreciate your input.

[Marijo1951 in reply to Weeko64]

I only want to say how much I admire people who suffer from one or both of these wretched ailments and manage to hold down a job. The only positive I can take from the experience is that at least I was safely retired before I became ill. I did a very mundane customer service job, nothing that required important decisions, but I know I couldn't have faced the daily commute and the office routine with the pain, stiffness and fatigue of PMR. Pred might have eased those symptoms but would have brought the burdens of brain fog and insomnia which would certainly not have helped either.

[PMRpro Ambassador]

Welcome!

I agree wholehearedly with what DorsetLady says - there is no virtue in hanging at a dose that isn't enough to manage you symptoms - especially when even 2-3 mg more would still have you in the physiological range: the same sort of amount that your body requires to function and makes in the natural form of cortisol. If you aren't taking it as pred, you are making it as cortisol. Good doctors accept that anything under 8mg is really good and unlikely to do much long term damage.

I am one of the 5% for whom PMR doesn't go away easily - I still have it after 15 years and 10 years on pred. I mostly need just above 10mg to feel and function well. Life without that doesn't appeal - so that's where I am with NO identifiable long term effects. I manage my weight fairly well with low carb, which also seems to help the symptoms, and bone density is fine, barely changed since the start of pred. But I have a good quality of life and am not greatly limited by either PMR symptoms or fatigue

Think about it.

[Weeko64 in reply to PMRpro]

Thanks, my Doctor agrees with the below 8 mg and as I mentioned in the reply to Dorsetlady I’m am for the most part not looking limited much when I’m around 5 mg.

It a balancing act to keep my rheumatologist, neurologist and me happy.

[Weeko64 in reply to PMRpro]

I also failed to mention my blood work has been pretty much normal for the last year since I stepped away from the massive amount of stress with the job.

I think that made a big difference.

[Weeko64]

Thank you ! I plan retire in a few years.

Thanks to good doctors I feel blessed to be able to do the things I like to do with only mild discomfort over the last year

[SheffieldJane]

It sounds like you have found the accommodation for this condition that we all need. Carry on, taking great care of yourself.

[Weeko64 in reply to SheffieldJane]

Thank you!

It was pure hell at first.

To make things worse they messed up on a liver biopsy while in the hospital went through my liver and my diaphragm unknowingly took me back to my room.

The next thing I know I had coded , I bled out into my chest and my lungs collapsed and my blood pressure went to zero.

A chest tube and blood transfusions were done and in ICU 2 days to get strong enough for 6 hours of surgery.

They opened my chest made repairs and removed 1 1/2 liters of blood clots.

Three chest tubs and a week more in ICU and by the Grace of God I am here and feeling blessed.

I hope you feel better and stay positive.

[Tombarnjesse]

Hi, That's very interesting - I have been diagnosed with PMR for coming up to 3 years - I am a male 68 and work part time ( 2.5 days per week). At first I could hardly walk but after being prescribed 15mg of pred per day the pain went and I could walk again . I have tried reducing the pred several times as I don't like the side affects. This time I have got down to 3 mg per day. I have got some worrying pain in the right thigh buttock and in the back of my knees . I am a keen cyclists and have continued to cycle weekly probably about 70 miles. I have never been referred to a rheumatologist - is this important ?

[PMRpro Ambassador in reply to Tombarnjesse]

Probably not given you have reduced to 3mg. Have you access to a good physio/massage therapist? Buttock pain can mean a spasmed piriformis muscle - irritating the sciatic nerve and that, for me at least, causes knee pain. Though the knee pain could be other things.

[Weeko64 in reply to PMRpro]

Thanks will give it a try

[Weeko64 in reply to Tombarnjesse]

I would get a rheumatologist.

[Gary1310 in reply to Weeko64]

I agree. My Rheumatologist is my Hero on this journey. He is at Marshfield Clinic Wi., He took me within a week of my call. He identified PMR immediately. I was prescribed 20 mg. Prednisone. Immediate pain relief.....9 months later I am at 4 mg. and reducing 1 mg per month. No pain....fatigue is a problem. I agree that pacing, and no stress is important.

[Noosat]

I'm with you in managing your problems, although I certainly do not have the expertise of those who are long time on this site. I do not assume that every problem means I have to go up with the prednisone dosage. I am down to 3.5 for the last week from 4mg. I work on my balance with yoga tree pose and other exercises. Admittedly this last week I've had a little more discomfit than before lowering dosage, but it could be due to more activity etc. I "talk" to my adrenals during meditation, telling them they need to "up" the output. Good Luck !

[Captainjonny]

I'm glad to have read this ... like you I have aimed to reduce my pred to the point where the aches/stiffness might remain but are "acceptable" - just "annoying" in your words. I'm now at 3.5/4mg. If I increase to 5, the level of ache will barely change; above 5 they may be more tolerable but still not by a lot. This said, I hear what, Dorset Lady says about keeping on a higher dosage to reduce the aches further - to the point of extinction? Maybe it's my male competitive spirit that drives me to the lower dosage?!