Using weights in the gym

Hi Carol Anne,

Welcome and I'm sure you will find plenty of advice here. If you haven't already done so, may I suggest you go back through past posts on various subjects where you will find some threads that are related to this post you have made.

You are on steroids to control the inflammation that is the cause of the symptoms which are typical of PMR and to make it livable with. Steroids do not cure it - at present they don't know what causes PMR and there is nothing that has been found to remove whatever that cause is.

However, as you may know, there is another illness called giant cell arteritis which is usually seen as temporal arteritis. GCA and PMR are accepted to be related diseases, just GCA is much more severe. Arteritis means inflamed arteries and leads to a poor blood supply to the organs that artery is going to because the artery is not able to accomodate extra blood flow - in temporal arteritis it is the optic nerve and can lead to blindness whilst in PMR it is the muscles and joints which are affected and that is what causes the pain when you try to use them and the oxygen supply isn't enough.

A similar thing happens in people who have something called peripheral vascular disease - basically blocked arteries - and they are unable to walk very far before getting cramp because the calf muscles aren't getting enough blood supply. After a rest they are able to walk a bit further until it happens again. The cure is to remove the blockage (in their case it may be with drugs or with surgery).

In our case, if we are lucky, a high enough dose of steroids will reduce this inflammation enough to allow us to do things without excessive pain but, as you know, steroids come with side-effects. We have to aim for a balance of freedom from pain and amount we can do and side-effects. Part of the treatment of PMR has to be a learning to accept some limitation of what was normal activity before PMR.

Before I was diagnosed I had had PMR for 4 or 5 years and it had started while I was using the gym quite a lot. Suddenly the cross-trainer was impossible because of the thigh muscle pain - but I thought it was just pulled muscles. I changed the stuff I was doing at the gym but eventually had to accept that it would have to be a change of gym - to one with a pool. I managed aqua aerobics every day and some Pilates and yoga - but weight training and ordinary classes were impossible. I would say in your case that you are expecting too much to do normal weight training and it won't help you get over the PMR in the long run either. Nor will it help you deal with the fatigue. Even Pilates included some things that were absolutely not on and had to be adapted.

There are some threads here about the desperate desire to get off steroids - basically, there is a choice. You can be reasonably pain-free on steroids and live an almost normal life but have to put up with the steroid side-effects or you can remain an invalid, in pain from the PMR and unable to do anything much but not have the steroid problems. You won't be able to exercise and you'll still put on weight from the inactivity. My weight gain was from the inactivity - before steroids.

good luck and keep in touch,

EileenH

Hi Eileen

Thank you so much for your response - which answers all my questions. I am still trying to do as much exercise as I did before I had PMR in the vain hope that I will get back to normal - but I know now that I'm not. I hate the thought that I exercised and dieted to stay healthy and this has happened to me I can't believe it - but I have to accept it.

Basically I have been left to decide by my GP when to taper the steroids and have not been given much advice and I think perhaps I tapered too quickly as in 18 months the stiffness and pain has never really disappeared.

I'm so glad I discovered this website as I know now I am not alone because its so hard to explain to friends and family how I feel when to them I appear OK - they even say I look better with the weight gain! As I am only 5' I don't want to put any more on.

Thanks again Eileen for you response

Hi again!

If you read through this forum you will see a lot of us were very fit and active prior to PMR - it's certainly not something you can ward off by a healthy lifestyle! I, too, am about the same height as you - yes, every half pound shows! If I'd only put on half a stone I'd be in heaven! I hate being the size I am, I've always had a weight problem and had worked very hard to get down to about 10 st (between size 10 and 12) in the years before PMR. That's a distant memory now.

I don't think I'd claim that many of us are totally free of pain and stiffness at any dose - even at 15mg, just so very much better than without. You are at a level now where you could try alternate day dosing, you take double the dose one day and none the next. There are posts about it on this forum, I use it and it works very well for me. It has the advantage of reducing the potential for side effects as you have well over 24 hours where there is little steroid drug in your body.

You must be on 10mg per day or less to try it and you increase the dose slightly on day 1 and reduce the dose the next day by the same amount, repeating this until you get to taking all the dose on day 1 and nothing on day 2. So, for example, if the starting dose was 10mg/day, you would take doses of 11/9/12/8/13/7/14/6 until you got to 18/2/19/1/20. I did it much quicker by going in 2.5mg steps and was fine - but that was before I found the instructions of how to do it properly! I sometimes find I'm a bit stiff on the evening of the \"off\" day but feel much better the next morning than I would expect. I think it is worth trying.

You will also find lots of info about tapering the dose here. As you go down the dose the amount you drop should be smaller, for example at a dose of 15mg you could drop 2.5mg to 12.5 with little problem but below 10mg the taper shouldn't really be more than 1mg every 4 weeks. I had got stuck at 13.5mg every second day and going down even half a mg didn't work. I've just had a flare-up and am back at 17mg every other day. I did too much and it had been very hot as well.

For loads of info on PMR - all medically approved - google pmr-gca uk northeast support group and read the useful information pages, and the rest of course! The national charity was set up in March, there is even a dvd for info for both you and the family and friends who don't understand about PMR and its consequences. I'm sure MrsK will be along and add to my recommendations - anything you see from her is worth following the link as she is part of the group that moved mountains to set up the charity to provide the support that is so lacking. I, too, have been left to deal with my steroid tapering, but that is because I know a lot about PMR and about pharmacology and am confident in what I'm doing. I still discuss it with my GP and get approval. It's not fair to abdicate their responsibility like that unless you too are happy.

You may get back to normal - there are stories on here from people who have, but it won't be from weight-lifting! A certain degree of TLC is required - and an awful lot of patience!

keep in touch - because I bet you will now find all sorts of other questions that had never occured to you!

EileenH

Hello Carol Ann

When I started my 2nd bout of PMR (2 yrs in Oct) when the Dr checked me out I was in my BMI at age 60 and going to the Gym /aerobics twice a week helping with Riding for the Disabled and looking after my own horses and land kept me fit also Unfortunately thats not the case now !!!

A lot of weight has gone on and at the beginning of the year I had to give up the exercise as I was getting so many muscle strains even behind my knees and was hopping up and down stairs !! I had a flare up Jan time and had to treble my steroids to 15mg and even house work and bending was a real problem

I have improved this summer ( now on 6mg ) and kept active with gardenning and doing work on my land but no formal exercise When I had PMR the first time I was 54 and I did manage Aerobics but in the Gym I was very careful and didnt do weights the Stepper and cross trainer

It has been upsetting gaining weight and no longer being fit but I just want this bout of PMR to go away and I plan this Autumn to go to a newish local Gym part NHS where they do deal with rehabilatation patients also Even if I just walk on the treadmill in the warm will be enough

Steroids should be of a high enough doseage to keep you reasonably pain free and your Dr shouldnt really expect you to sort yourself out with your reductions I was at first on monthly blood tests and Dr visists now on 2 monthly but my Dr always gives me a blood test form in case I have a problem She knows that I go on this site and have learnt a bit about PMR by now !!!!!!!!! so we discuss my reduction programme but she always says dont suffer if the doseage needs to go up it will be able to come down again I have had to learn patience this year !!!!!! So make sure you rest enough and try some lighter forms of exercise or you could I think bring on a real flare up if you overdo it

Best wishes to you and keep in touch

Mrs G

Hi Mrs G and Eileen

Thank you both for your responses.

I have gone from 7.5 mg to 5 mg and back up to 7.5 and I am still in pain - in fact it has never ever gone from neck, shoulders it even hurts when I breathe in and sneeze! - I am beginning to think I should up my dosage to 10. As you say Eileen whats the point of taking them if they are not working at that dosage.

I have also just found out that I have Osteoporosis - which came as a surprise too. Its like I've gone from this healthy, fit person to an old woman overnight. Anyway enough moaning there are worse things. Keeping fit was my thing so its hard to change my habits - but change I must.

Can anyone tell me if PMR is a virus?

Regards

Carol Anne

Carol Anne M

The short answer to your question is PMR a Virus is we do not know, currently there is no known cause or cure. Pred alleviates the symptoms and that it all.

PMR has a mind of its own - it comes when it wants and goes when it wants.

If you visit www.pmr-gca-northeast.org.uk, there is medical information, patients information, helpful advice on exercise, fatigue and people's stories. There is also a DVD made specifically for PMR and GCA patients.

To be diagnosed in May this year and now trying to exist of 7.5mg I am not surprised that you are still in pain. That is a quick drop.

You may like ask your GP for a full spectrum blood test and also ask him to include, a thyroid test and a Vit D deficiency check.

The Vit D, if deficient can also cause muscle weakness and pain and is quite common in people who are getting on a bit. If its deficient, you need at least 2000 units per day.

Remember also that the ESR and CRP are just guidelines - the ESR is higher as you get older and also its higher in women than men.

Past threads have explained, that once diagnosed the markers are just that, markers - they can rise if something else is going on.

Osteo - Gluscosamine (1500mg) per day can help with Osteo, but it does not work for everyone. I was lucky it works for me and is a tremendous help. I was prescirbed it because Volterol was not compatible with Pred and I did not want a Kenelogue injection.

EileenH takes is with another tablet, whose name I forget, but Eileen will tell you.

Finally, you do not say where you are located, but on the website I have referred you to, you will find a list of support groups or contacts. There may be one in your area.

There is also an International Survey, run by patients and there is a link from the website. It is well worth filling in.

Sorry that there is no magic bullet - but one day if we keep pushing there might be.

Good Luck and learn to go with the flow.

Hi Carol Anne again!

Did you have a dexa scan to diagnose the osteoporosis? It should really have been done before or soon after you were put on steroids when the PMR was diagnosed as taking steroids does reduce the amount of calcium taken up into bone anyway so puts you at risk of reduced bone density - and it is helpful to know if you have a problem there beforehand.

Osteoporosis - or at least the precursor of it, osteopenia - is becoming more of a problem as our diets have been changed over the years by all the healthy eating brigade advice. Our intake of vit D and calcium has been affected as we are told we should eat low fat foods, reduce dairy products, eat hardly any eggs and so on - all important sources of essential items in the formation of bone. To add to it all we are not to go out in the sun during the middle of the day or if we do should cover ourselves in sunscreen - and as a result we have loads of small children with, or on the verge of, rickets and older young women with the seeds of future problems due to the lack of vit D.

Maybe the biggest problem is the myth about milk and calcium: the skimmed stuff is claimed to be as good for you as semi-skimmed, there's even more calcium in it! Well yes, because there is less fat which makes the percentage of calcium marginally higher. But therein lies the problem - you can't absorb the calcium properly unless there is some fat to carry it. And I suspect there are many women of our age out there who have been dieting half their lives and avoiding fat like the plague because that's \"healthy\" and who now have a bone density problem. I know a few. However - given that oven chips with 4% fat are perceived to be acceptable, how come a food with 1.5% fat is seen as bad? Even whole milk is rarely more than 4% fat unless it is Jersey!

Carol Anne - were you given calcium and vit D supplements when you were started on steroids? Did your doctor check your vit D and calcium levels at the outset? If so, were they in the normal ranges? Was it ever suggested that you should take alendronic acid to prevent possible osteoporosis, as this seems to be the idea nowadays? And frankly - if not, why not?

And I know you said you do weight work-outs at the gym, but did you know that won't do anything to prevent osteoporosis, nor will cycling or the cross-trainer? The \"weight-bearing\" exercise talked about is BODY-weight bearing exercise. You need to walk at a brisk enough pace so that when your foot hits the ground the bones in your body \"feel\" the impact. The long bones need to bend very, very slightly to get the message that they need to make new bone tissue. Obviously - if you have PMR that's quite often a tall order. I'd not describe my walking as ever being at a brisk pace nowadays! Another good exercise for bone density is skipping - don't know about that in PMR either!

In terms of PMR being caused by a virus - I think that is a recent claim but there are some people who want everything to be due to a virus whether it's cancer or whatever. Or there's the other group who say you've had a virus because they don't want to admit they have no idea what you have got! And it's difficult to cure viral infection, they go away when they're ready! There are certainly lots of people whose PMR has manifested soon after having had a flu-like illness. However, there are also loads who have developed it after a very stressful period of their lives or after an accident. And in some it just happened. For the others, the common factor is stress - we use the word stress to mean all sorts of things but the common factor in illness, injury and stressful situations is a need for the body to produce more cortisol, the body's own steroid, which is essential for fighting off infection, healing damaged tissue and coping. It is part of complex feedback set-up in the body and if there is anything wrong with that the body doesn't produce the goods. No-one really k

Hi Eileen and Mrs G

Thanks for your comprehensive responses and its so useful to me to hear all your information on PMR and Osteoporosis.

When my GP put me on steroids he said I needed a bone scan but I waited 6 months for an appointment. When I eventually had the scan I asked the nurse if it was OK - she said not the best - which worried me. Going back to the GP he said I had Osteoporosis - it came as a shock. I am on Alendronic Acid and Ad-Cal. I must confess I do sometimes avoid taking the Ad-Cal as I find it gives me constipation and do not want to start taking medication for that too! One thing seems to lead to another.

Mrs G - it was May 2009 I was diagnosed - sorry if my post was misleading.

I too have hot flushes at night and through the day - which my GP says is the steroids but does not give me any advice to eliviate them - anyone got any ideas/

Regards

Carol Anne

Hi Carol Anne,

You shouldn't have waited 6 months for an appointment - that breaks the guidelines and your GP should have pushed a bit as a baseline is useful if you go on to develop osteoprosis - was it as a result of the steroids or not? As a prospective longterm steroid user you weren't just any old patient (or, in this case, young one). However, what's done is done!

You must take the calcium supplements I'm afraid - the alendronic acid \"attracts\" the calcium in your body into the bone and if your blood calcium level is low it can cause some rather nasty side-effects - that's why blood calcium and vit D levels should be done BEFORE you start taking the alendronic acid and if it is low, which it often is in people with autoimmune diseases for some reason, that must be corrected first to avoid these problems. Says it quite clearly in the data sheet - blowed if I can see why doctors can't understand the concept!

As for the calcium supplements, several people have commented adversely about them - well, I must be REALLY strange (nothing new there, I guess :lol: ) because I actually like them, they're just sweeties to suck as far as I'm concerned! There is no pharmacological reason at all why they should cause you to get bunged up unless you aren't drinking enough. There are a few different versions, ask to try others. You do need to think a bit about sucking them and make sure the bigger bits get broken down before you swallow. I'm taking Calcichew at the moment - I think I do prefer them to Ad-cal. Here in Italy you get aniseed flavour ones - think ouzo!

The hot flushes at night aren't as bothersome if you can keep the bedroom cool. Mine have come back as I've just had to up my steroids because of a flare - yuk! Despite my husband's whinging I have the door to the balcony open but with the outer blind down although not all the way. I would happily not put the blind down at all. We have separate duvets (have done for years) so it's easy for me to chuck mine off and when it's really warm at night I just use a cover with no quilt in it. Or nothing!! I think a slowly turning ceiling fan is good too - it gives just enough air movement to improve comfort and is quieter than an ordinary fan. I noticed Dyson have a new form of fan with no rotor which they claim makes more comfortable air movement and - as there is no rotor - I imagine must be quieter. Worth investigating maybe?

And, having a moan is not a bad thing! We here, at least, know where you're coming from even if your family and friends (and, probably, GP)don't! Unfortunately we can only offer virtual hugs! But - consider yourself hugged :lol:

EileenH

Carol Anne

Syrup of Figs or canned Californian Prunes in their own juice.

Both natural products and good for 'moving'.

Hello again Carol Ann

I like Eileen have had no problems with Calcium supps I also take Calcichew I also take the Alecdronic Acid I do drink lots of water and start the day with either Porridge and ready to eat prunes or soaked Allbran and prunes I eat fruit as a pudding so I dont have any problems with constipation at all but I really think the water is important

I had my Dexa scan within 2 month but my Dr apologised for the delay as she hadnt sent the request off !! Make sure you are having all your blood tests, diabetes checks, blood pressure ,Glaucoma etc Im not keen on weight checks now !!!! Also regular reviews face to face with the Dr I think I still after 2 years go every 2 months

Best wishes

Mrs G

If you have gained weight then you have to look at your diet. Stop eating more than you can burn off.