Hi I'm new here .. Given prednisolone today after weeks of trying to find out what's wrong with me. Saw a new doc who has been very sympathetic and helping all he can.
I'm a bit scared at the thought of steroids but the horrendous pain swelling and inflamation in my foot for weeks makes me think it can't be worse
Hi jojo ,sorry that you have joined our PMR club .....you will get lots of really good information on this site along with lots of help with all your questions going through your head about the dreaded steriods and of course your Polymyalgia pain .i my self have had PMR for three years and started off like many with lots and lots of pain ,to the extent I could not even dress my self in the mornings ,nearly three years later I am 75% better ,some days are worse than others ...I started on 25 mg of pred and very very slowly I am on 5 mg .wishing you lots of luck on your journey x
Have you only got pain in your foot? Have you had blood tests to see if it is PMR (raised ESR and CRP) or arthritis?
Steroids are frightening, but they are sometimes the only things that can help.
What dose of pred have you been put on? Did your doctor explain why he thought pred was a good idea?
Please let us know more about your discomfort, then one of our experts can advise you.
Hello jojo, yes, welcome to the club nobody wants to be in!
apart from the fact that I am a bit on the nosey side, I second Constance. Do tell us a bit about how all the symptoms started, what tests have been done and how your Dr proposes to treat you on this recovery journey. Regards, christina
Hi jojo. Everyone on this forum has been there so you are not alone. Don't be worried about the steroids because at the moment these are the only thing that will help you with dealing with PMR. You will discover via this website what the side affects are which vary between us but with help from fellow sufferers you will get thru it. We are all here with you and for you. All the best Dave (tavidu)
dont be even keel as you go across this not so nice illness good look scared jo jo you will be ok. i have been on steroids for 3,5 years without any side efects. i am now down to 1 mg and feeling fine, just a few niggly bits of mussel pain but not the pmr tearing pain, the people on this forum will see you through as they have me.. i dont think i could have done it without every ones opinion. just take things easier than before, but dont be under active iether, you will meet your
Thank you all for the welcome and info. Not just my foot it's mostly everywhere now... Hips and back bad. Started me on 15 and will hopefully drop after 3 weeks. Doc ringing me next week to see how I am getting on with them.
I've had cancer and chemo but being a wuss about the steroids. Still after reading replys I need to give them a go. Will keep you posted and good to have the group to chat to. :-)
You poor thing! You really have gone through it, haven't you?
Keep posting. We are here to advise and help, even if it sometimes only to listen and commiserate.
Good luck!
C. 💐
I had PMR symptoms for about 6/7 years before a serious flare with GCA symptoms rushed me to the GP for steroids. I was so grateful for steroids, they are life savers. I was much better within a day or two, doing things I had not been able to do since I was a youngster. The only problem has been, that the GP insisted the dose was far too rapidly reduced which causes flares, and twice I had two serious flares which need not have happened if the GP had been more cautious. I take Vit D3 and Calcium.
Hi, Jojo,
I'm newly diagnosed with PMR and had long discussions with my 2nd rheumatologist about my fear of prednisone since I have osteoporosis and I'm extremely near sighted which means I am a candidate for glaucoma (another side effect of the drug).
However I was getting worse--limping so badly from what seemed like pulled muscles in my right leg, nodding out while I was driving, losing weight (I've always been thin so this was super bad for me). Rheumy #2 said go see a neurologist to see if you have those kind of problems. #2 said I had myofacial pain syndrome.
I went to big group practice of neurologists who said
--no neurology problem
--probably PMR
--go to a rheumy in a teaching/research hospital
Went back to #2 rheumy and he said because I did not have faver and my neck and shoulders were not locked up, I didn't have PMR. But I also asked my GP for a referral to the teaching hospital in DC where I live.
Rheumy #3 did a thorough exam, took my Lyme Disease worry seriously ordered another Western Blot test and confidently prescribed the prednisone.
In 2 weeks on 15 mg, I felt 90 percent better. I'm not sure now though that the miracle cure consistently works but all I can say is I was spiralling down. I have been on the drug at 15 mg for a month and just yesterday went down to 12.5 mg. I am hoping for the best.
I hope my story helps you, Jojo!
Hi karren, just remember there is no cure for PMR and the preds we take simply treat the pain (PMR) that the autoimmune inflammatory condition create. I'm pleased you are responding well to preds. Look up the Bristol PMR plan, that will give you a good insight into gold standard treatment, however, many of us find that once we get to 10mgs we are more susceptible to flares as the reduction drop of 1mg is too great so we choose to reduce by .5mgs. Good luck, christina
Christina, I don't yet understand about the flares but thanks for this warning. I'm going to ask my new doc about this.
I did experience one day without the pred because my doc said take the 15 mg for two weeks and then come see me. so I stopped at 2 weeks exactly and got hit with the symptoms again within 8 hours. Luckily I was with someone (I was away from home on a writing retreat) who knew I needed to stay on the meds and luckly I had the dose to get me home the next day.
Karren you learnt the hard way about not taking preds. whilst we are on our own high doses of preds our own adrenal grands go to sleep therefore they do not create any of our own steroids that our bodies require to survive. our bodies require approximately 8 / 71/2 mg of steroids a day to function successfully therefore if we forget to take our preds and our adrenal glands are asleep our bodies will be receiving no steroids at all and this situation can prove very nasty indeed I believe 2 days without preds is the maximum period we can go without steriods and you would probably be sent to a&e as an emergency should this happen.
a flare is whereby the inflammation levels in our body is higher than the dose of prednisolone and so if this level of inflamation is allowed to burn away out of control the result will be a flare. all the PMR symptoms will return and you will require larger amounts of preds to once again get and keep the inflamation back under control.
that's why if you reduce each dose by .5 you can more easily control if you are at the limit of the preds in relation to the level of inflamation. Also if you stay on each dose for 6 weeks it gives that dose plenty of time to really get to grips with the level of inflamation.
when we reduce each dose we may also experience withdrawal. Withdrawel is when our bodies have been on a dose of preds for a while and it then gets the hump when we reduce the dose. The symptoms are the same as for a flare, however, these symptoms will not get worse, they deminish over the following week of the new dose.
a flare will however steadily get worse over the following week of a new dose and it's then that you really need to up your dose back to the last dose where you were well.
if the flare gets really out of control you may need to up your dose considerably in order to bring the flare under control and keep it under control then reduce the dose to the last dose you were on before the flare. When you get to 10mgs there is a dead slow method for reducing further. Please someone provide it please, I don't have the link!!!
many of us follies this in order to reduce the risk if a flare. Good luck christina
well i dont know what happened to the last post i put on sounds like double dutch to me and i wrote it. anyway my opinion is you reduced to fast. go back a up a couple of mg then reduce slower. and please go on the north east site you will learn loads of stuff on there good luck
If you have only been on pred for up to a couple of weeks it isn't dangerous to miss the doses or even stop - it is after 3-4 weeks that you need to taper slowly.
You will find the slow reduction plan in the replies section of this thread. The first post provides a lot of links to useful information:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Thank you! That's reassuring.