I apologise if this is just a repeat of other posts gone by, but it's really hard to search through old discussions....
I also apologise if this is just a newbie question....
The thing I don't get yet is how come people still get pain and fatigue etc if you are taking pred? If you are taking the appropriate dose then why are you still suffering? I thought the whole idea was that you take the minumum dose to control the symptoms. I understand that you might/will get flare ups but surely it's just a case of increasing the dose and not just putting up with it?
I am still adjusting my dose and had a flare up last week because I dropped it too quickly, but I get that. What I don't get is why people are suffering when it seems a simple fix to up the dose when you get a flare up.
You will be hearing from the experts on your question but my understanding and experience is that the pred decreases the inflammation which is what causes the muscle pain (lack of oxygen to the tissue). It does nothing for other PMR symptoms such as fatigue, brain fog, moods etc. It is hard because the pred also has it's own side affects, some of them similar to PMR.
Finding the right dosage of pred is a challenge, especially to those that are new to PMR. It is absolutely necessary to reduce your dose very, very slowly because each flare is worse than the last and takes longer to manage. That has been my experience anyway. I have been on pred for just over 2 years and, because of my impatience have had 2 flares. Once I was at 1 1/2mg and had to go to 7 1/2mg and after what I thought was a reasonable amount of time and getting back to 4 mg with no problems I tried to go to 3 1/2 still using Eileen's very slow method. I got to my 3 Rd week and had a flare. I had to go all the way back to 10mg to get a handle on it. Needless to say I was very, very discouraged. After 2 months at 10mg I am going to try and go to 9mg and stay there for awhile. I'll refer to our great ladies to help me with it.
Sorry to go on and on but it is so important to accept that PMR is your boss for awhile and you need to do what it wants or it will hang about watching every move and blast you for any mistakes you make.
It is a lousy thing to have but, unlike a lot of other nasty diseases out there, it will go away and we need to remember that.
Take good care of yourself and I hope you are in less pain very soon.
Pred only gets rid of the pain not the fatigue sadly. Also not everyone is lucky enough to be totally pain free with the pred. A lot of doctors are very keen that patients should reduce their dose as fast as possible because of the possible nasty pred side effects. I find when I reduce even very slowly I get some steroid withdrawal pain and also the PMR does not like having its steroids reduced, which also causes some pain for a few days. I also found when I had a bad flare recently, it took several days for the pred to reduce the pain, it was not like the miracle cure when I first started taking it. You may be one of the lucky people who finds pred reduces the pain one hundred per cent and you can slowly reduce with no problems.
I visited my doctor the other day and showed him the article that Eileen was kind enough to send me. He didnt even look at it and advised me that the pain in my hands and the tops of my feet is from fibromyalgia the GP and rheumatlogist agree. They put me on Lyrica and want the pred reduced as scheduled 20mg to start dec 1 2014 dropping by 2.5 every 2 weeks until 10mg then 1 mg every 4 weeks. My physiothrtapist doesn't think I have fibro just pmr. Question? Has anyone had pain in hands and feet it started when i went below 10 mg also pain in hips buttocks and shoulders. Also is any one just changing dosages on there own with doctors permission. It seems my doctors are not very flexible
If you get off the train before the station you'll be in REAL REAL trouble!!!
Have patience. I've had PMR for 4 years. I still have dodgy blood results, pain when walking, fatigue, etc etc. Everyone hates pred, but we have no choice.
I hope you are one of the lucky ones and that your journey will be a short one.
Hallo Jo. I have pain in my arms and ankles. Hip, buttock, arms and shoulders seem to be part of the course with PMR.
I'm inclined to take Eileen's and Mrs 0's advice about doses of pred (and reducing at 1/2 per month). I always tell my Dr and Rheumy that I'm on 2 mgs less than I am (a little white lie that keeps them happy!)
Hi Diane, i have read with interest your comments to flipdover, i started taking 10mg pred in January of this year, and this week my doctor wants me to go down to 9mg. So i am going to do what Dr Kate refers to in her book, 5 days take ten and 2 takes 9 and do this untill i am on all nines, i just hope my doctor is not trying to get me off them too quick. Have a good day
Hi Jo i was on holiday when i had to reduce pred from 10mg to 7.5mg it was hell my hubby nearly left me iwas so bad, so i started back on to 10mg my self, saw another doctor when i got home and told her what Eileen told me, she agreed with Eileen said stay on ten for 2 more weeks, then we will reduce you by 1mg. I seem to be able to talk to this doctor as she seems to understand about pmr, but we will see, as i think the more you ask questions they wont like it.
What you are saying is certainly what I do. Sure, I have the fatigue and dense brain left from the PMR but I haven't had pain or stiffness since starting the Prednisolone. (Apart from a day or two when I reduced according to the schedule I was given initially and it was too big a jump) Now I reduce very slowly. I don't consider myself suffering because the pain and stiffness have gone, or as I think of it, are hiding....
i do have side effects from the Prednisolone but they are definitely preferable to my pre steroid state!
Also, if it helps, a few months ago, I was reading all these posts you refer to and was also puzzled, but we all seem to be different with different responses to the steroids. I am just glad that for the moment anyway, I am one of the lucky ones.
Hello Jo, pre diagnosis, I had pain in my 2 thumbs, no other pain in my hands. I also had pain in the outside left hand wrist bone. As soon as I took preds these along with all my other pains went.
I am very lucky in that my drs are very flexible. My treatment plan is based very much on the Bristol PMR plan, 15 for 6 weeks, 12.5 for 6 weeks, 10 for 6 months, 9 for 6 weeks, then when I attempted to reduce from 9 to 8 i suffered a flare. At around the same time I had my rheumatologist appointment and asked if in the future I could only reduce by .5 and he was very happy to allow me to do this. So I have only just reached 9 to 8.5 reduction from December last years flare and hoping I don't get another flare. As I say I'm very lucky, however, if I was not quite so lucky I would be quite happy to manipulate things to work my way, ie, because it is accepted that you shouldn't reduce when you are ill or under stress I'd simply pretend to have colds or tummy bugs, exams, or other made up trauma in order that I stayed on the level of preds that keep me in line with Bristol/Eileen's very slow reduction method. Yes, it would be deceitful but I wouldn't care, it's my body and my recovery and there's no one out there who cares about ourselves more than ourselves. Regards, christina
Did the pain improve quickly with 20mg? If it did then it is most likely to be PMR. Fibro pain does not respond to pred as it is NOT inflammation and fibro also does not cause raised blood levels of ESR and CRP.
A study done recently by the Leeds, UK research group has confirmed that you can have hand and foot pain with PMR - and it was by far the worst part of PMR for me. I was forced to wear the walking boots I would have worn up a mountain to walk any distance, my feet were swollen - they've gone down a couple of European sizes and I can wear shoes again I bought 10 years ago.
The hip, buttocks and shoulders pain could be myofascial pain syndrome which often happens alongside PMR. Discuss that with your physio as it can be helped with manual mobilisation techniques she can do although local cortisone injections are probably quicker but I don't see your doctor being too helpful there. Bowen therapy also helps greatly. If you can reduce that pain you can often manage the rest with a lower oral dose of pred.
I have always managed my own dose in collaboration with a GP. If I hd pain I didn't reduce, if it got too bad I went back up. Noone has ever forced me to reduce against my judgement. What I did do originally was reduce too fast (too big steps) and that caused all sorts of problems in getting below 10mg which was a real sticking point and that is common. When I started using the "dead slow and nearly stop" reduction from the beginning (15mg) I have steadily reduced and am currently at 4mg trying for 3mg. I've given up once because of aching biceps, this is a second attempt.
I go back tot he previous dose very fast if I experience problems - letting a flare get hold makes it far more difficult to control it and then reduce, especially if you get into a yoyo situation with your dose. Going very cautiously with minimal step sizes helps to avoid that, doing even 1mg overnight (i.e. from every day old dose to every day new dose without spreading it over a few weeks) is far too much for some people.
But if 20mg pred helped your pain to about 70% improvement overall and your physio is confident it is PMR not fibro - go and look for another doctor if your won't discuss it. The difference I had in the stiffness and that side of the pain was so dramatic it was difficult to deny - but my rheumy did. Simply by refusing to listen and read the diary I had kept. The hand and foot pain took several months to really go and occasionally I get sharp pains in my hands if I bend them wrong. But they did go altogether eventually. You often don't get rid of all the pain immediately - but there should be a big improvement with 15/20mg in a week or so. If there isn't then there can be a question as to whether it is PMR. The same with even higher doses - a lot of things will improve with high doses.
Most of it has already been said - but if you get into a yoyo situation with your dose you will be in trouble in the long term. As well as taking the pred - and yes, you need to lowest dose to manage the symptoms - YOU must do some management too. You have to identify the things that cause pain and try to avoid doing them. Your muscles are intolerant of acute exercise - they won't tell you you are doing too much and they will take far longer than they would normally to recover from overdoing things. Going for a long walk is more like running a race without training for your muscles at present. The pred doesn't change that - you have to look after them.
There are also other things - hip, upper leg, shoulder, low back pain can all be due to myofascial pain syndrome which is often found alongside PMR. It doesn't respond so well to lower doses of pred and may reappear. It is due to concentrations of cytokines (inflammatory substances) in knots in the larger muscles rather than cytokines being spread all through the body and making you feel generally unwell in various ways. It's like very dirty spots that don't come out in the wash and need local treatment to get rid of them. A physio can try manual mobilisation or a few sessions of Bowen therapy may help - and while you have to pay you don't have to have a doctor's say-so and they won't harm you. You might feel worse for a few days until the cytokines have been washed out of your system - but the dirty marks will have gone!
These sort of pains won't improve by upping your pred dose for a few days, ordinary PMR pain usually does. But to go to the sort of dose that manages them would mean exposing yourself to a lot of pred side effects inthe long term. That little innocent looking white tablet is a very powerful drug - with quite a few unwanted side effects which you need to keep to a minimum. Used properly it is a life-restorer for PMR patients but used wrongly it can cause trouble and that is why doctors are so scared of using it.
Sounds like a good question to me....yes, with what we read on these posts, too many people don't seem to be getting full benefit/advice from their GPs/professionals.....Bron
once you get to a few consectutive days of the new dose you may feel discomfort and this scheme takes a long time to get to consectutive days. It has been used by a lot ofpatients on all forums and works well.
once you get to a few consectutive days of the new dose you may feel discomfort and this scheme takes a long time to get to consectutive days. It has been used by a lot ofpatients on all forums and works well.
Like so many others I had a swollen left hand every morning (right hand OK) it usually lasted about 2/3 hours and was fine for the rest of the day. It lasted for around 2 months and then suddenly stopped - can't put a reason on it, but very thankful. Strange how we are all different, life might be easier if everyone was the same - do x,y and z and everything will be OK.