For three years I thought I may have ME
Today in serape ration I saw a private Dr and he feels it is likely I could have polymyalgia. Reading treatment for this is a bit scary! Steroid side effects. Does anyone have any experience of this? Will I put on a lot of weight. Any comments would be very helpful thanks in advance
Not particularly scary - when you experience the relief you get and for many of us within hours!
There are 82 listed side effects of pred - no-one gets them all, many get very few. You may put on weight - you may lose weight, some do. And I put on weight and have lost it all (40lbs) by being very disciplined and cutting carbs drastically. In fact, I weigh less than I did before pred because i had put on a fair bit of weight due to PMR and being unable to exercise. You will find out what affects you once you start to take it - and then we can talk about ways to help.
But above all - pred is your friend, you may have some pesky side-effects (or not) but you will be able to move with far less pain and while you won't be back to normal you will feel much much better. But don't be fooled - pred only deals with symptoms and the underlying illness is still there so don't go rushing about catching up!
Follow this link to find a post with lots of links for reliable and sensible info. Read and then ask your questions.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Just read all the posts on this forum. Practically all aspects of PMR have been discussed. There is a wealth of information on this site. It IS scary, but, chin up, it is treatable. Good luck!
Hi paddiwhack, sorry to hear of your diagnosis. But given most of us spent considerable time in acute pain and stiffness and our lives were severely effected by the untreated condition believe Eileen, prednisolone very quickly, ( it only took 4 hours for preds and me to become the best of friends) is a friend we really do need. Eileen's given you the all important link(s) but this forum is great if you're ever unsure of anything or you want to share your experiences. Welcome and all the best, christina
If it really is PMR steroids will have a magical effect when you start taking them usually in a day or two and you will be able to at least carry on your life. If this is not the case it is quite likely you do not have polymyalgia. I was petrified of putting on weight and getting a moon face. I heard that cutting out simple carbs and gluten would stop this, which I did and it seems to have worked, although I do slip occasionally nowadays, I was very good at the beginning.
Thank you for your post I feel better now. I tried gluten fee hoping it would help my energy levels but I felt worse. With hindsight I think it was a coincidence with z flare up of my symptoms. The thought of having normal energy levels outweighs every negative thought. I feel happier just knowing that there may be a solution. I just struggle with my weight at the best of times and getting. Bigger terrifies me!
Thank you
Thank you very much Christina, hopefully I will know more in a couple of days
As someone who also struggles with their weight I completely understand your fear. But honestly, if it's a choice of more weight or living with pain and fatigue I'll take the extra kilos.
Take the pred, see how it goes. If it works and you do have PMR you will have to think about what you need to do to keep the weight down.
I lost weight in the first 3-4 months by watching my calories, then slipped - now I'm back on it and have started losing a bit. You know how it goes.
Hi Paddiwhack; for years, my GP called all my symptoms "polymyalgia"...which really means, when broken down, means pain in many areas.....I was never offered any Steroids orally, but did have Cortisone injections into the Joints that were affected....and they really helped....many fingers/wrist/ribs/shoulder/knees etc.....but if for the muscles...I take Amityptilline., and physio....where exactly is the majority of your pain?..... and yes, I do understand the emotions that go with these symptoms, for as many will say, "until we get that Official diagnosis", we all feel in limbo (this is also helped with by the Amityptilline)........Bron
Have you started taking steroids?
I was diagnosed with Polymyalgia and went privateand the Rheumatoligist prescribed Prednislone the steroid, when I went for 1st consultation i was crippled with this and in so much pain, I took the steroid the same day 10mg and within 48hours I could walk and do loads in the house that is how quick it should work if you def have this, if not then you don't have PR they say, I did not get any fatter in fact I lost weight , not sure why but didn't feel any hungrier, you just ahve to watch what you are eating regards this , I am now coming very slowly off the steroids over a period of months as it is dangerous to stop them immediately, I wa sonly on the 10mg dose which is low anyway for 2 weeks and then itis taking me ove 6 months to educe from that going down a mg each mnth approx. now I am getting the pain back with reduction .
Just to say your Doctor or Rheumatologist will put you on Vitamin D and calcium supplements which you must take with the steroids for this condition, free on script x
gosh sorry about the writing mistakes but I have Osteoarthritis as well and it affects my joints with stiffness so its hopeless having the 2 together xx
Thanks flipdover
I guess I will adjust to the idea and as you say my health is more important.
Thank you
That's interesting Bron. The doctor told me the treatment was steroids.
My pain is mainly wrist fingers elbows shoulders neck and ankles and burning aching thighs plus hips but does alternate in severity. My biggest problem is complete wipe out fatigue and trouble sleeping. I cannot work as I did so have to do what I can (not easy when you run your own business)
Thanks very helpful
Hi Chrissy
Thanks for this info. I hope you manage a dose which continues to help you. The thought of more energy and less pain is wonderful.
My dr said if it is not this then likely fibromyalgia!
Keep as well as you can. Thanks
Thank you. I love in Soain so won't be free but I'm happy to pay for anything to help my health and avoid osteoporosis
Hi paddiwhack, just to add to chrissie's comment, if your GP doesn't prescribe vit d, calcium and magnesium (always take magnesium if taking calcium, 1/2 of whatever you take in calcium), then purchase these supplements yourself. You only need take the RDA for each of them (I know that RDA's are different depending on where you live in the worlds) but preds aren't good for the bones so calcium is recommended. All the best, christina
Thanks Christina. I will remember this
Hi paddiwhack, it's me again, but this is what preds do for you. Before diagnosis I couldn't do anything I was in so much pain, now I've been up for 2 hours, done the bins, done some ironing, answered all my emails, showered, the list could go on. As I said pre preds I would still have been in bed for 9am.
The only treatment for PMR is steriods, forget about Ibuprofen or other pain killers, none of them will even touch PMR pain which is very specific. Your Dr will no doubt tell you, if they prescribe prednisolone that within the first dose you should experience great pain relief, at least 70% then over the coming months if you're lucky, like me, almost complete pain relief. Some patients will never achieve total pain relief and about 90% relief is often all that can be achieved. If no pain relief or very little pain relief following preds is experienced then you probably do not have PMR. Regards christina