I'm 50, diagnosed with PMR 2 weeks. 15mg pried really helping. Wondering about exercising again.

Thanks everyone for your advice and reference to previous threads. This is all very new to me. Two weeks ago I had never heard of PMR or prednisolone. Feel I could sit an exam now! I've never even been on a forum before.

Am very grateful for the medication, although I'm worriedly awaiting the side effects- when does the 'moon face' appear?! I'm having an MRI scan this week and looking to start reducing pred to 12.5mg next week. It seems that it's all about attuning to my body and adapting to my capabilities.

On another note, I have always been a fan of massage but stopped as it was just too painful. I'm having regular acupuncture and reading up on anti inflammatory diets. It would be great to read Your experiences with complimentary therapies (will defo be taking pred though).

I hope everyone that replied sees this message. Thank you all. It's been really helpful to find this forum and learn from others. Good health x

I categorically refuse to accept that I will suffer from the side effects. Blind faith possibly, but I've always kept myself fit, never been ill, eat properly and believe in the drugs I'm taking and treat anything complementary with suspicion.

Kittylitter, if you are strict with your diet you may never get a "moon face".  I didn't.  The other side effects take a while as the pred gradually affects the various body systems, but if you eat very healthfully, get appropriate exercise and, above all, rest and try to avoid stress, you may be able to have a successful taper to a lower dose within a few months, and every little reduction results in a little decrease in the side effects.  For example, at about 7 mg I was one of those who would feel sudden weakness in the legs and was sometimes afraid that my leg would give way when I was out walking.  But that has gone away as the taper continues. Other side effects are harder to see, like bone thinning (that's why the diet and supplements are important) eye pressure, blood sugar (diet again), and so on.  All we can really do is endeavour to increase our health and wellbeing.  Pred gives us back our lives, but it is in spite of the pred that we will regain true health.  And we are in this for the long haul. No rushing to get off the pred!

I've read very little about eye pressure on these posts. I recently had a routine eye test and told the optician I had PMR and had been on steroids for 3 months. Eye pressure was normal. She said if it had not increased by now it probably would not in the future. Was she right? Eileen?

I think like everything else it's idiosyncratic.  I would gladly have experienced moonface if it meant I did not have increased ocular pressure or increased blood sugar levels or a diagnosis of osteopenia (although to be fair I don't know if I can blame the last on the pred).  I had my eye test after six months on pred and have moved into a range where the eye doctor wants me to return in four months - prior to that I'd had a regular exam every two years and no pressure issues.  I'd recommend that people get checked every year.  I went to see the eye doctor a year earlier than I normally would.  He was also able to reassure me that there was no sign of GCA.

Can an optician help with GCA diagnosis?

No idea Andy - certainly, mine hadn't increased after 4 years on pred. The received wisdom is that any loss of bone density occurs in the first 3-6 months of pred treatment. Is that true? Again, no idea. However, I refuse to believe you can be as clear cut as that - I'd rather have the occasional check just in case. But then, for me they don't cost THAT much and it is reasonably easy to persuade the doctor to refer me. In the UK, eye pressures are particularly easy to arrange - opticians can do them. 

Blood sugar checks are easy enough to demand, same with cholesterol, weight and so on. I think it is up to us to ensure we have certain things kept an eye on - in the absence of movement on the GP's part.

The moonface may never appear - though you may get hamster cheeks! But quite a few people on the forums have avoided excessive levels of either by cutting carbs drastically, especially the processed/empty ones with white flour and sugar. Coincidence? I don't think so - I was totally Cushingoid 4 years ago, I cut carbs radically and have lost 18kg, all moonface/midriff bulge and hump disappeared. I need to lose a bit more but the shape is fine.

Massage is often "too painful" - it releases the same inflammatory substances that cause PMR into the system and apaprently leads to a flare of the PMR symptoms. I don't find it a problem - in that the storage bins of these things are being emptied to some extent and plenty of water to drink washed them out fairly quickly. My favoured complementary therapy is Bowen therapy - which deals with the add-ons of the problem rather than the PMR itself. But remove some of the pain - and you may well need less pred.

If you develop any visual symptoms and your GP is being pathetic - a proper optican who can do the full range of examinations (not jsut dispense specs) is a good resort. By looking at the back of your eye it is possible to see if there is any adverse effect on the optic nerve: poor blood supply to it will lead to a change in appearance. That applies for chronic reduced blood flow (similar to what happens in angina) but if there is sudden interruption of blood flow (as in a stroke or heart attack) that is a different matter and they can't anticipate that.

But you can have GCA without it affecting the eyes - it can affect any artery with an elastic component to its wall and there are very many of those.

If you develop any visual symptoms and your GP is being pathetic - a proper optican who can do the full range of examinations (not jsut dispense specs) is a good resort. By looking at the back of your eye it is possible to see if there is any adverse effect on the optic nerve: poor blood supply to it will lead to a change in appearance. That applies for chronic reduced blood flow (similar to what happens in angina) but if there is sudden interruption of blood flow (as in a stroke or heart attack) that is a different matter and they can't anticipate that.

But you can have GCA without it affecting the eyes - it can affect any artery with an elastic component to its wall and there are very many of those.

I don't know.  My eye doctor is an ophthalmologist.  However my gp had suggested I just go to an eyeglasses place and have the optician check my eye pressure.  I didn't think that I wanted to go to some random optician, and as my ophthalmologist has my eye history it made sense to go to him.  He immediately saw the significant increase of ocular pressure over what it had been for years, and spent longer than usual checking the back of my eyes.  He was also very knowledgeable about PMR, GCA and pred, and had I not already learned so much (from these forums) I would have left his office very well educated indeed.

You were very brave, Daniel, to carry on in the face of this disease.  The bad thing of course is the pred affecting the muscles.  However, give yourself time and you will eventually start to get stronger again.  Things Take Time.  

Thanks for replying Daniel. Your story is very sobering. I hope you are now on the road to recovery. Very best wishes. Kitty

Hi Daniel

I'm interested in your research that a side effect of Prednisolone can be muscle myalgia. Eileen is brilliant on PMR and I wonder if she's seen evidence based research that confirms this?

Personal experience confirms this for at least some of us.  

Lots of literature online speaks to this known side effect. Confirmed by my doctor. I couldn't help but notice the loss of muscle bulk and definition

Oops! I've got my question wrong. Prednisolone obviously treats muscle myalgia. What concerns me is that it might consume muscle mass. If that's correct then it's something to consider when deciding how much exercise we should take on.

I am sorry to see what happened to you, but appreciate that you shared the consequences of hard training.  I am active, 66 year old person, but not at competitive level, just for fitness. Because of that I had luxury to moderate my training at the lower intensity, staying in "recovery" zone most of the time and only spending just few minutes at high intensity. The main reason I am doing this is that I believe that recovery zone exercise actually helps in PMR recovery by supplying more blood to muscles without stressing them to cause additional inflammation.

I know that competitive days might be behind you, but you have to look at where you want to be for the rest of your life and focus your effort to achieve proper balance and good health.

As has been said - one of the side effects of corticosteroids is muscle MYOPATHY, deterioration in the muscles: 

"Steroid myopathy may be more frequent with the use of fluorinated steroids, such as dexamethasone or triamcinolone, than with nonfluorinated ones, such as prednisone or hydrocortisone. Although the exact mechanism of the muscle pathology is unclear, it may be related to decreased protein synthesis, increased protein degradation, alterations in carbohydrate metabolism, mitochondrial alterations, electrolyte disturbances, and/or decreased sarcolemmal excitability. Sedentary lifestyle may increase the risk of muscle weakness in a patient taking corticosteroids, since corticosteroids seem to affect less active muscles preferentially. Two distinct types of steroid myopathy exist, acute and chronic. The chronic (or classic) form occurs after prolonged use of corticosteroids and has a more insidious course. The acute form is less common, is associated with rhabdomyolysis, and occurs abruptly while the patient is receiving high-dose corticosteroids."

It is most likely to happen in the chronic form at high doses of pred - 40-60mg/day and can happen within weeks or may take years whereas the acute form can happen suddenly and muscle is actually destroyed, rhabdomyolysis, and can be life-threatening. In the chronic form the Type II muscle fibres atrophy but do not die off and new fibres are not formed. In rhabdomyolysis there may be necrosis (death) of the fibres but this isn't seen in the chronic form.

Advice for managing it includes:

"Some literature suggests that aerobic exercises and resistance training may help to prevent weakness or reduce its severity. Although there are no definitive recommendations regarding therapy for steroid myopathy, it would seem reasonable to direct therapy to address the weakness and resulting impaired mobility. Range-of-motion exercises (either passive, active-assisted, or active, depending on the degree of weakness) and stretching exercises should be performed to prevent joint contractures. As a general rule, resistance exercises should be limited to muscles with greater than antigravity strength. Bed mobility, balance activities, transfer training, and gait training should be included to address decreased mobility. However, high intensity exercise should be avoided, because, according to some preliminary animal research models, it may be harmful."

This suggests to me that any patient who develops steroid myopathy should NOT be doing any high intensity exercise - which would fit with Daniel's experiences. I suspect the combination of being on corticosteroids and having an autoimmune disorder may well move a lot of goalposts! I also suspect there is a degree at least of mitochondrial dysfunction involved in PMR - but I don't think anyone has looked at that yet. I think there is hope of some PMR patients having muscle biopsies done to look at this in a current study in the UK. I'd be there in a heartbeat if I could participate but it is complicated by my being on an anticoagulant!

In PMR the blood supply to the muscles is impaired - probably due to the swelling in the very small blood vessels as a result of the inflammation - and it is also possible the autoimmune process that causes that actually physically damages the blood vessels, possibly even the muscles to some extent, in some patients. The pred reduces the inflammation part of the disease - but it has no effect on the autoimmune part and any damage being caused by that will continue, so the muscles remain intolerant of acute exercise.

It is possible to train the muscles even when you have PMR - but since training effectively involves damage to the muscles when "over"using them and then them repairing themselves and so being stronger, the fact that the muscles recover far slower than is normal means you can't go about training in your usual way. Doing any exercise to exhaustion - a traditional way of training muscles - will result in excessive soreness and fatigue and it will take a long time to recover just because of the poor blood flow which results in poor oxygen and nutrient supply together with the accumulation of waste products of exercise in the muscles. Very slow increases in intensity/duration do seem to result in increased muscle strength - but like everything to do with PMR, the process is a slow one.

I suffered quite noticeable muscle wasting with methyl prednisolone - it hadn't happened to me with prednisolone and since switching to prednisone I have, as far as I can tell, rebuilt all the muscle that had wasted away. It wasn't helped by having developed achilles tendonitis so I was on crutches for 9 months which did make walking something of a challenge!

 

Yes, interesting.  I asked my physiotherapist about high intensity exercise as a means of dealing with this oseopenia, and she strongly said that it would be a bad idea.  She said what I could do if I felt so inclined was, while I was out walking, to speed up and walk as fast as possible for a couple of minutes, and this would be helpful.  She likes that I can do pushups and said if I wanted to increase that workout I could do them while wearing my weighted vest.  Definitely, this physio is a treasure.  💚

We knew what you meant!

Eileen. Once again, thanks very much for taking the time to write such a clear and knowledgeable response. It's very helpful to have an explanation of the science behind what we're all facing and trying to cope with so we can take positive, informed steps to mitigate the effects of PMR. Do you have the link to the article that you extracted the 2 paragraphs in inverted comma? I just love the science!

They are from medscape articles - if you copy and paste the first couple of lines into your search engine they should come up and that should make them obtainable to you all if you want to read them. You may have to register with Medscape, I'm not sure.

Eileen, in my situation your observations are very much on the mark.  I was doing high intensity training and did not want to buckle to PMR.  I rowed in the US Masters Nationals and again in the World Chanpionships in Belgium.  

I noticed the the onset of myopathy after three months of taking prednisone and when h had tapered from 20 to around 12.5mg. There was no mistaking the muscle loss, and as a rowers, it reflected in speed and exhaustion.  I kept at it and competed through the fall but knew I was in decline.  Have since stopped and am struggling to get back to even steady maintenance exercise.  I guess I am the poster child for why high intensity and prednisone  don't mix

I'm female and soon to be 63 here! Had PMR for 5 years and treated with Prednizone for 3 years.

I've posted on this site many times. I too was very active. I ran a bit, cycled, kayaked and swim leisurely. On my 60th birthday in celebration I flew to Colorado and with a relative and climbed a 14,000+ ft, Mt Democrat. It was hard and yes I struggled with the altitude since I came from Indiana at 800ft elevation. My leg muscles were not an issue after the hike but I was a bit sore. I had been on Prednizone just 6 wks. Having dealt with PMR for a couple years undiagnosed.

Well the summer of 2015 I tried it again. What a difference, it took me much longer, my brother in law had no patience with me (he just didn't get it) and after the hike up Quandry Peak at 14,000+ ft I thought my legs would fall off. I could barely walk, the quads hurt to touch. It took 5 days for relief. It was then that I realized what the Pred and PMR had done to me.

I doubt I'll ever get to do it again unless this PMR leaves, but by then I'll be too old.

I had so dreamed of hiking the AT or the Camino de Santiago someday. I'm my dreams I guess.

Ive had to resort to short spurts of activity. I do miss it. I can walk 5 miles with no adverse affects. I just feel so old now. I miss it all! 😩

I don't know where it was but I'm sure I remember reading that there is some thought that really overdoing exercise can actually be a trigger. And I suppose, that if you are already suffering mild PMR, doing a relatively large amount of exercise could be the cherry on the top.

I think it was the summer I started with the PMR symptoms - though they were very vague, lack of strength in the quads as much as anything - that I had visitors here in Italy at our flat and we went up to a nearby high-level hike, a circular 4-5 hour walk at about 2000m. It isn't particularly strenuous and we all completed it without any bother. The next day we were all pretty stiff - but mine then seemed to last a long time and when I went to start preparing for the winter ski season I simply couldn't do more than a minute or two of the cross-trainer without severe claudication pain in my quads.

So I suppose the question is as to whether it was that hike that finished off the PMR affecting my muscles so much? 

I thought I'd made my peace with giving up skiing - until a couple of weeks ago when we dropped family off at another valley for them to have a week there. The piste was literally outside their bedroom window and it was cold and snowing at the time - it was BEAUTIFUL snow...

My goal was to get below 30 minutes for a 5 mile road race. Since PMR I haven't been able to run at all. I still hope that if this goes into remission I will be able to start again but will cross that bridge if and when... My walking is going well though. I have slowly got to 4.5 miles a day average at quite a brisk pace (4 mph) but that is all I can do. Upper body strength is non existent at the moment so no swimming or weights for me but I will get there I'm sure.

i find I cope with it by having small goals that are (fairly) easy to achieve.

 

You might be interested in skinnyjonny's story on the HealthUnlocked PMRGCAUK forum. 

He was a fire fighter and in training for a long distance run when he developed PMR and ended up in a wheelchair. He's back to running - about a year later for the first 5km.

If you google skinnyjonny PMRGCAUK healthunlocked forum you should get a link to several of his posts and once on the forum you can use their search function to find all his posts.

Hello All,

I am new to this forum but have been reading it for a few days now. After living with PMR for 2 1/2 years, I decided it was time. I will be 58 this month. 

Eileen, I can't tell you how helpful your informative posts have been, and the reason I decided to join this group. I've never been part of a forum in my life, and experienced good health until PMR hit suddenly in the summer of 2013.

I live in Canada, diagnosed myself after researching my sudden onset of shoulder/hip pain, and had never heard of PMR even though I'm a registered nurse. I convinced my doc that this is what I had, and got to see a rheumatologist within a month.  I tapered the prednisone slowly as articles on the internet suggested, and found that even my rheumatologist was not useful, other than to confirm the diagnosis based on my rapid response to my dose of prednisone. I did my own research and I waited for PMR to subside as the literature said it would by three years. I now realize that it is not going to happen, and is the main reason I have decided to become part of a forum of people experiencing what I am.

Since being on Prednisone, I have had cataract surgery in one eye, been put on beta blocker for hypertension, and Prolia for osteopenia.  I now manage on 3 mg Pred, but have periodic flare ups for sure. I have definitely noticed a reduction in muscle strength.  I do try to keep up with group  stretching classes, but some weeks are better than others. I swim, walk and try to keep active. I have read books on anti inflammatory diet, cut out foods that were deemed highly inflammatory, and honestly haven't been able to say that any of the food exclusions have made a difference.

My goal is to try to keep as active as possible and learn from you, the people who have PMR.

I look forward to being part of this wonderful group!    Sheila

 

Welcome Sheila, to this unfortunate community!  Yes, the people here are so supportive, it's been a lifesaver for me.  I'm in Canada too.  Not too much information about PMR here I don't think; the UK forums are where it's at! 

What is it about men in uniform that attracts woman?  

Remarkable recovery story.  At the first glance, I did not find details about early exercise regiment and how he managed to make progress inspite of PMR. Perhaps I missed it and I will take a second look. 

Eileen,

I feel for you! May I suggest buying some snow shoes? I have no trouble walking and I have found I love snowshoeing. I love nature and the outdoors, and this at least gets me out in the winter. I live in Indiana in the US. on a lake. The sad part is that we had a very mild winter this year and I didn't get out once, no more than 4" of snow at one time. 😩 Check EBay for snowshoes, just don't get them too long, investigate how to buy them.

I envy you in Italy, it's on my bucket list of places to visit. I'll bet Indiana isn't on your bucket list!

I plan to swim across my lake a lot this summer as I do a few times a week. When I get tired I just float. I also cycle, but I'm a bit worried about my 60 miler (about a 100k) coming up in June. I will work up to it.

Running is probably out of the question. Had 4 foot surgeries, my last in Nov. female surgery for prolapse in Dec. too so running is only a dream anymore. Thank you for all your advice.

Just stay active anyway you can!

That's interesting - my GP said categorically NO, not snowshoe-ing (she does it)! But then, we do have to walk up a mountain to get to enough snow! At the moment walking into the village is about the sum total of a morning's exercise. Afternoons are better - but that isn't saying much!

Indiana not on a bucket list? Hadn't thought of it but you know,  everywhere should be on a bucket list at some way at some point. I'm working my way around the world as meetings come up appropriately and flights are paid for   even if they don't apparently sound like a weekend in Rome!

Sheila - welcome and where-ish in Canada? To be on 3mg is excellent, low enough to be unlikely to cause any problems. I'd accepted 5mg but the PMR has recently had other ideas!

What do you mean? I'm not attracted by uniforms - my own or any others.

The mention of his profession was to indicate the level of fitness he had when he developed PMR.

I'm sure there is something somewhere about his early exercise regimen but I do know that it was VERY gentle as he had access through the fire brigade to a hydrotherapy and tailored physiotherapy. Those who know him better are sure that had a lot to do with it.

Found it - you will find his story on the PMRGCAUK Northeast of England support group website - John Robson.

"What do you mean? I'm not attracted by uniforms - my own or any others."

It was a joke... or at least an attempt to make one...

Please think about it Nick - how would you feel if I suggested men are attracted to uniforms? No doubt many are. But I suspect you would not have thought it was particularly funny. 

But this isn't really the place for discussions about that.

Sorry if it offended you in any way... Would not do to anyone, especially you, who I have great respect....

If you have seen movie "Magic Mike", which is about male dancers,  using the theme of firefighters and uniform, you would understand what I implied... I was trying to lighten the tone on this forums, because laughter is better then medication, when it comes to humane spirit...

Oh well...

 

I live in Calgary, Alberta.  Thank you for the welcome.  Yes, after close to 3 years with PMR, I am glad to be managing on 3 mg, especially after reading so many of the stories on PMR timeline.  LIke you, I had to convince my GP and rheumatologist that I had PMR, based solely on information online.  I had never heard of it before even though I'm a nurse.    I can't imagine you having to live with PMR for so many years  before getting Prednisone! After a month of living with the pain of fairly sudden onset PMR, I was begging the doc for Prednisone and took it literally the minute I got blood work drawn for inflammatory markers. Within three hours I was pain free. That's when she believed me that it was indeed PMR. I was very careful to taper very very slowly over the past two years, and sometimes increase again, according to the stiffness. I think that was the secret. I did try 2.5 of Pred and very quickly flared up, so for the most part, I can manage on fluctuating between  3-4 mg.

I had relatives living in Indiana for a few years.  I actually really enjoyed visiting Indianapolis although I would never have gone otherwise.  There was something about the city which made me think of The Great Gatsby and that time period, not sure why.  They've got a lot of "culture" not just the automobile racetrack, including modern zoo, well-known art gallery, university, amazing childrens' museum, and a pride in their literary history. You get the idea. A lot of the problems of American cities are also quite strikingly on display but the times I visited I never felt unsafe.  

Sheila - Fancy meeting for coffee (or something) - Sat 18th June?? We land in Calgary late 17th, leave on Sunday 19th in the morning for our "tour".

I'll also be in Vancouver/Whistler in mid- May for a medical meeting. And at some point of our tour in June it's hoped to have a "support group meeting" in the Vancouver area with several Canadian PMR-ers. 

Nick - offended would be far too harsh a word, and it takes a great deal to offend me. Apology accepted. But do think about it - it may be a sign of the times that after nearly 50 years of us being told "women can have it all and you are equal", we're not...

Eileen, I would LOVE to meet you!   You are in my calendar for the 18th. You will have to let me know what time would be best for you, given the time change. I am open to coffee or lunch - can meet you at your hotel or wherever is convenient.  You can message me privately with details and I can give you my phone number.  

Wow, you really are a globe trotter!