i have been given steroids for this condition and been told what they can do to my body, i.e. brittle bones, diabetes etc. my question is - are these consequences inevitable or is there anything i can do myself to ward off these things happening, obviously i am eating oily fish etc, and walking my dog for exercise.

29 Replies

  • No, it is far from inevitable, your doctor seems a bit off course. There are 82 listed side effects of Pred; no one gets them all, a few get some and some patients get none. This is the same with any drug.

    Which side effects you might suffer with depends entirely on your own individual case. Not only does PMR customise it symptoms for you, but your reaction to Pred is also individual. You may find some common similarities with others as you travel along (which is helpful of course) but it would be unlikely that any other patient would mirror you.

    You are doing the right things, diet, exercise, fresh air, rest. But don't forget that you are ill. There will be days when some TLC is required so give yourself a generous break every now and then!

  • thankyou i really appreciate your reply

  • I was about the write exactly the same as polkadotcom! All of it!

    I have been on pred for over 7 years, much of it at above 10mg. My bone density didn't change at all in the first 3+ years, it has gone down slightly in the last 3+ years - but is still slap bang in the middle of the normal range for someone my age. I have never had any sign of diabetes developing - that should be monitored by your doctor by doing an Hba1c blood test every few months which looks at average blood sugar levels over the previous few months. As long as it remains in the normal range you aren't even pre-diabetic - and if it starts to wriggle upwards than you can adjust your diet to compensate. You may gain weight due to pred - you can also help reduce that risk by cutting carbs, particularly processed ones, and that also helps the diabetes question.

    There are, as pdc says, 82+ listed side effects of pred - wait and see what you develop, if any. Some are easy to deal with, some are less so. But they aren't half as bad or as common as most doctors think.

    What other dire warnings did the cheerful bunny offer?

  • thankyou so much for your info it seems i am doing everything i need to. i was a bit frightened but now i am not

  • You may be prescribed Medication to protect against Osteoporosis (ask) and take a good Calcium supplement. You can also be careful with your diet and avoid carbs and refined sugars. It would be sensible to ask for a bone scan now and some way into your treatment too. Currently I am not taking the medication to ward off Osteoporosis because of side effects and an average bone scan result. I walk a lot too ( when I can).

    Hope this helps. Some of this is the luck of the draw. Good luck with your journey eggy-18.

  • so very greatful for all your info not as frightened as i was. i do watch my diet and very rarely eat processed food i also have my border terrier billy and walk every morning and just a short walk on an evening thankyou all again

  • There really is no need to be frightened - I often say, if you have to have an autoimmune disorder then PMR is the one to get! It really makes me angry when doctors present the only solution to our pain as such a terrifying prospect. I was very pleased to be at a meeting in Canada earlier this year where I found several rheumies who DID understand our point of view.

    Pred is a bit like childbirth - it can be very unpleasant but it doesn't always happen!

  • I have been on and off prednisone for short durations three different times. Because they still can't figure out what I have. But I did notice Moody temperament insomnia muscle weakness and I felt like I was coming down with a cold the whole time I was on it. But then I don't know what else would develop over a longer period. One thing I'd like to ask is it sounds like most people are able to go for walks or do some type of exercise once they take the prednisone. When I was on it even exercising still made my pain much worse. Does walking increase your pain even though your on prednisone?

  • Depends how much I do - if I overdo things, yes, the PMR pain comes back. And some people are really unwell with it and any exercise is next to impossible. Everyone is a bit different.

    However - what pain is worse with exercise? Really detailed now...

  • It depends on the type of exercise. If I try to ride the recumbent bike I get much higher pain in my hips thighs and adductor muscles. Also my lower calves don't like it either. If I try to walk everything below the waist flares up and hurts a lot worse. It's usually in the days after the exercise. If I ride the bike and get some aerobic exercise all the blood getting to my muscles they actually feel better the day after but then get a lot worse the second third and fourth and so on days after

  • Try cutting the amount you do drastically. Then build up VERY slowly. And try doing say 5 mins followed by 5 mins rest and then increasing the times - but of the magnitude of 1 min extra every few days. I ski-ed for a long time with PMR but I had to start at the beginning of the season with maybe 2 or 3 very short runs and go home. Over the season I could build up very slowly to be able to ski much of the morning on short runs - but the rest on the lift was essential. I couldn't do half as many longer runs without the rest.

    It also sounds as if you may have some low back problems that are independent of the PMR. I get similar problems due to myofascial pain syndrome - google it and have a look. I find Bowen therapy helps and so does myofascial release therapy.

  • Great suggestions. Thank you very much. I'm beginning to think because of the way my muscles react to activity that it might not be PMR but another type of inflammation. But all the blood work does not show any type of autoimmune at work. But I have been wanting to try the Bowen. I tried massages but every time it just made the pain worse

  • "I'm beginning to think because of the way my muscles react to activity that it might not be PMR"

    Why? Exercise making muscle pain worse is pretty typical of PMR fpr most people. If you have any myofascial pain problems then massage often makes things feel worse - it releases the inflammatory substances from the inflamed tissues into the blood stream - and it feels like a flare. I like using good targeted massage - but I expect I will probably feel rough for a day or two.

  • I have heard a lot of people say on here that regular painkillers don't seem to touch their PMR pain. I can use lidocaine patches or oxycodone hydrocodone tramadol or even aspirin and Tylenol and those things seem to have quite a effect on my pain. Does that seem normal For PMR?

  • Not to me no. And I know others who say nothing helped until pred. In the UK we would be very unlikely to be offered oxycodone or tramadol so that I can't comment on. Maybe others in the US can.

  • PMRpro, I have not heard anyone mention muscle cramps. My muscles especially in the morning feel like they're all twitching like when you have a twitch in your muscle that goes on for a few hours. But that every week or so I get a really severe cramp in one of my lower leg ankle areas. Especially if I've walked too much that day. Which is not much at all mind you if I go a 10th of a mile in the day that's a record

  • Have you tried magnesium supplements for the cramps? Pred makes you lose magnesium through the kidneys so it is easy to get deficient. That is the first thing doctors here in mainland Europe would suggest - then look for other causes if it didn't help.

    Try eating lots of dark leafy greens, nuts, seeds, fish, beans, whole grains, avocados, yogurt, bananas, dried fruit, dark chocolate. These are good for potassium too.

    You should maybe ask your doctor to check your sodium, potassium and calcium levels too - the wrong potassium and calcium levels can cause muscle cramps too.

  • I was wondering if you have any muscle cramps associated with the condition

  • I did get foot cramps before pred if I remember rightly - long time ago! My middle toes would suddenly cramp downwards. Magnesium sorted that too.

  • no it does not make my pain any but i do feel exhausted when i get back

  • Hi PMRpro: It was interesting to hear that you attended a meeting on PMR here in Canada. Could I ask where? I can't even get to see a Rheumatologist here in Halifax, NS. I was told that "they only see people who are really sick"! This was 3 years ago, I admit, and I felt it was lucky that my doctor diagnosed PMR, knowing of a friend who had to wait for 2 years before a diagnosis (but then my Dr. is from Ireland originally).

  • Jubilee7, If your GP is managing your PMR appropriately you shouldn't need a rheumatologist. If you have GCA, that's another story of course, or if you seem to have too many add ons or there's a question about your diagnosis. My GP is as good as I could hope for, I think. The best thing about her, apart from her being able to diagnose me very quickly after I'd suffered with another doctor for over a year, is the fact that she allows me to reduce my own way (I'm using dead slow) and even cheers me on when I achieve another step! I don't think she monitors me quite as thoroughly as is advised here, but I think that's a result of instructions to the medics not to overburden our system with tests unless they are really needed. I've had two DXA scans, a year apart, still waiting for results of latest one, and will NEVER take osteoporosis medications, which is the the only reason my GP has ever suggested I see a rheumatologist. I refused the offer! I think it would have taken about a year to get an appointment had I agreed.

    BTW I live in Dartmouth! Hi neighbour!

    If you want to meet a rheumatologist, sign up for one of the bones clinics at the hospital (HOME or DOME, depending whether you attend in Halifax or Dartmouth). I did after first scan said I had bone thinning, at risk of fracture in 10 years. Had to wait over six months to get into a session, but parts of it were very interesting, so worth the wait.

  • Well you two can't get much closer together! Time for an embryonic support group methinks!

  • Duly edited - if you insist!!!!!! ;-)

  • Yes, we are within spitting distance, it seems. Thanks for the osteo info. My GP has done well, as it has turned out. I have had PMR for 3 years, am down to 2mg of Pred. and she is letting me do my tapering, although she wants me off the drug.

  • Just had a closer look at the two programs offered through Capital Health. It appears that the Dartmouth one is superior in offering a session with rheumatologist. You refer yourself so no need to ask your GP. I found the session a bit frustrating because she spent most of her time talking about the safe way to take OP medication, assuming that one would inevitably be taking it. But there was ample opportunity to ask questions and although I didn't always get the answers I was looking for, I was able to ask everything I wanted to.

    Discussion of PMR in the session is relevant because of the possible effects of steroid treatment on bone health.

  • It wasn't just PMR, it was the OMERACT meeting in Whistler this year - an international meeting within rheumatology in general which includes 10% patients, which is unique. It was set up to draw up criteria to be used in studies on rheumatic diseases so that they are all measuring the same things and can be put together (i.e. apples and apples, not apples and pears!). At the moment it is difficult to compare a US study with a European study - in fact, not always is it possible to compare a US study with another US study! If you can pool all studies they become more powerful.

    Originally it was rheumatoid arthritis but then was extended to include other theumatological diseases. Patients are included because it was realised we know what is important to the patients - doctors can look at what is achieved with drugs and think they are good while patients point out they don't measure by figures but by experiences. I was involved in a VERY lively discussion about using corticosteroids which open a few eyes on the part of the doctors. PMR has only been brought in in recent years - because we have a group of researchers who decided to join in.

  • Thanks, PMRpro, interesting.

  • i have only recently been diagnosed with PMR my restrictive movement came on quite suddenly i am glad of any info about the illness. the prednisolone i have been prescribed has definitely helped with my stiffness

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