I've been reducing my prednisone dose by 1.25mg per week for three weeks, because GP now believes I don't have PMR. Each drop resulted in a worsening of whatever it is I've got (pain in wrists, forearms, elbows, shoulder, neck and ribs at the back)., I came down with a rash on torso around this time but GP advised it wasn't connected to prednisone and told me to decrease dose in 2.5 mg steps which I did. Next day I was woken at 1:00 am by excrutiating pain in both forearms, applied hot compresses and pain gradually abated. Saw Gp the next day, his advice was 'hang in there'.next day around the same time again woken by excruciating pain in forearm, four hours later got wife to take me to emergency. Doctors treatment: none, other than 25mg prednisone for five days then reduce to 10 mgs. I'm a bit worried when I drop from 25mgs to 10mgs I''m going to be in a world of pain. Comments?
Hello Tony
Sorry to hear you are not doing too well. Tony did the GP give you an alternative diagnosis if he does not think you have PMR? When did you first start on Prednisone and did you respond to the Pred? I find it interesting that the Emergency Doctors increased the prednisone. Now the very important question Do you feel better on the increased dose of Pred? If the answer is yes than one would have to think you do have PMR. I like your GP's treatment regime "hang in there" what is that supposed to mean! If you have pain it needs to be treated. If you have been a regular visitor to the forum you would have seen the advice re coming off Pred. Slow as you go.
Is your GP basing his withdrawal of PMR diagnosis on blood tests? Would like to hear back from you with further info.
I do hope that we all here on the forum can help support you and help lift your spirits with the advice you get.
Take care
Kathy
Hi tony, I have had PMR for 18 months now and I am still on 14mg a day but reducing very slowly due to flares. I agree wholeheartedly with Kassie regarding your doctors comments as he is not the one suffering the pain. I had a similar problem with my own doctor who advised "I don't think you have PMR so reduce to 10mg (from 25mg) in two weeks so that I can test you". After two weeks and my doctor being given details of this website he apologised, admitted I had PMR and has left me to deal with my own dosage to suit the pain. Good luck.
I quizzed my GP on reducing by 2.5 mg and he assured me I wouldnt suffer any problems with pain as I didn't have PMR. Two blood tests returned elevated ESR and anaemia, that combined with bi lateral pain in arms convincec him I had it. What convinced him I didn't have it was I still had pain when on the initial 15 mg dose. That and the fact I could get out of a chair without using my arms and I could raise my arms abover shoulder level. I was expecting to recieve some level of pain relief from Docs, but? What I really want to know is what are the likely consequences of dropping from 25mg back down to 10 mg after 5 days. Without an argument I wouldn't expect him to be writing a scripts to bring me down slower.
I started off on 15mg a day but still had pai. My doctor had to persuade me to up dosage rather than be in pain and finally after going up to 20mg then 25mg the pain finally went. She left it to me from then on to control my own pain but then she left the practice and the new doctor was not convinced I had PMR until he saw the state of me after two weeks and had logged on to this website then he allowed me to be back in control. Sometimes 15mg (the average dose for PMR) is not enough, control the pain and then slowly reduce.
Oops, missed a couple of questions/answers. No alternative diagnosis but he did refer me to a Rheumatologist, can't get in until Xmas though. I was due to go on a cruize next Saturday but have had to cancel due to latest events. Feeling a little better, but only took the 25 mg dose this morning. What I have noticed is regardless of dose I feel ok as long as I do absolutely nothing, and I mean nothing. The moment I use my hands/arms I suffer excruciating pain from around 8:pm that night: wrists, forearms, elbows upper arms, neck back and ribs at back. Unfortunately I can only get in around 3- 4 single doses of ibuprofen until they make me ill and panadiene forte does pretty well nothing. And this rash is driving me nuts, sooo itchy...
Tony are you saying that you are not getting relief at 25mg? If that is the case it may not be PMR. One thing you should not take Ibuprofen and steroids together as they are contra indicative. Reducing steroids whether you have PMR or not causes steroid withdrawal symptoms. I would have thought such a drop way too much. You can drop in quite large amounts if you have been on pred for just a few days though which is not true in your case. I went to a rheumatologist privately in the end I was in so much pain, he diagnosed PMR. Can you see a dermatologist about the rash?
Tony what a disappointment having to cancel the cruise. How long have you been on the 15 mgms pred? Some PMR sufferers have to start on a higher dose initially. you said in your initial post that with each reduction your pain was getting worse you also said that the GP stated that you wouldn't have any problems with pain when reducing the pred as you don't have PMR. GP hasn't got it right yet has he. My suggestion is you see how you go on the 25 mgms over the next 5 days if your pain improves you have PMR if not then you need pain relief of a different type. Ibobrufen can give you a rash and itchy skin. It is not advisable to take pred and Ibuprofen as they can both affect your tummy and cause bleeding. Might be worth stopping the ibuprofen. With regards to the dropping the Pred from 25 mgms back down to 10 mgms I would see if Eileen has some thought on that.
Cheers
Kathy
No, I'm saying I took my first 25mg dose this morning, that's about 12 hours ago and at the moment I'm doing ok. I'll bo on the 25mg dose for five days and then drop to 10mgs, that was my question: what are the likely effects of dropping from 25 to 10 after five days on 25.
I'm aware ibuprofen and prednisone together are not recommended; however, my GP suggested it ' as needed', and as I said I can only take 3-4 doses before feeling ill. Believe me if your in enough pain you will try anything. Have an appointment with a dermatologist next Friday.
I was on 15mgs prednisone for around two months before starting down, made it to 10 and that's when the excritiating pain began? Up until then I was ok as long as I didn't use my hands.
I'd like to try using my hands in a day or so but I have also identified RSI as an alternative based on my symptoms and areas affected. With RSI they recommend complete rest.
Try splitting the dose it helps me. I wake by 5am 10mg, lunch 5mg supper 5mg
Really reduces the pain over the day and much better in morning almost normal where before it took me up to 3 hrs to move
Mariane Toronto
Sorry everyone but what is PMR?
Lucy
Tony, if you are OK over the next five days on 25mg and from what you say, the symptoms do seems like PMR. In my opinion it does seem that your GP is a bit of a numptie and has not got much of a clue about PMR or steroids. Dropping from 25mg to 10mg after such a period of time I would have thought is a recipe for disaster. I would just reduce slowly and surely, when you feel you are stable at one dose then reduce. If you go slowly you can usually stop easily if any pain starts. Obviously 10mg did not have the inflammation under control.
You could try paracetamol instead of Ibuprofen, but ideally the steroids should be enough.
PMR = Polymyalgia Rheumatica. You are on a thread which is discussing the symptoms of this condition. It is an autoimmune disease the symptoms of which are excruciating pain in the shoulders and / or hips along with fatigue and flu like symptoms. The pain can be controlled by taking steroids long term, which have their own problems. They do help to make life tolerable though. PMR is not curable (perhaps one day) but can go into remission after years rather than months.
Tony
If using enteric coated pred, wash off the dye, it can cause a rash.
If not, then it could be hives which is one of the rarer side effects listed for Pred.
Follow this link to another place on this site and then read up on everything.
http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Also look at the British Society of Rheumatologists Guidelines on the Treatment and Diagnosis of PMR.
Thanks. My consultant in another speciality referred tto my signs and symptoms as being myalgia with some OA.
I am awaiting a referral but in the meantime m GP has prescribed codeine for the pain.
Myalgia just means muscle pain in Greek. It is not really a diagnosis of anything.
Thats what I thought. You know I felt so terrible today that I fell asleep at the keyboard hence sending the previous message before finishing it. I apologise.
My anas -anti nuclear antibodies were positive and so was the EBV. I still have not got a diqagnosis yet still in pain and woried about my mobility.
Lucy.
Your earlier post is a lovely picture of a nap.
Ha, ha. LOL.
Lucy.
I have been in terrible pain all day. Hope tomorrow is better. I need a miracle. Lucy xxxxxxxx