i wish i hadnt started prendisone

Hi please dont get upset, i too have only been on pred since January 2015, and i hate it, but i know its the only thing that will help, you are on the right forum as they are some lovely people here to help you along the way, and very knowledgable too. You are not alone Sharon with us, and from time to time we all want to cry and shout its part of this illness.I have been told it does get better so i am trying to have faith.

Sending you lots of hugs. Margaret

Before I was diagnosed with PMR I was in a terrible state. I think if I had gone on without pred I would have been in a wheelchair in a care home by now or buying a one way ticket to Switzerland to Dignitas. I have found that PMR is totally life changing. I was terribly active, did all sorts of charity work as well as working and then discovered that at 5pm I closed down so I could not do the things that I enjoyed pre PMR. I had always done things for others, I even got an MBE for it. I decided that I would now pamper myself, if it is having nice smellies in the bath or shower, putting my feet up with a good book, I bought a fantastic gravity chair to sit out in the sun, my friends have been fantastic, I gave them front door keys so if I had trouble getting up they could just let themselves in. They have cooked for me, brought flowers round, shopped for me and driven me to consultants etc if needed. I did actually carry on working mainly from home, but took it slowly and it meant I was limited doing my extra curricula activities. I also decided to find out about nutrition and became a total bore talking about vitamin contents, simple carbs etc. I also decided that housework was not really for me, so now I only do any if I can't stand the dust any longer.

Hello there, I'm so sorry to hear how unwell you are and many of us on this forum can sympathise with many of your issues.

the trouble with PMR is that whatever damage it's doing to you internally, because the pain is so overwhelming until we find relief from that pain many of us find it hard to think of anything else or function properly.

you say that you wish you hadn't started on prednisolone but unfortunately this drug is the only drug that plays a part in our recovery journey. But if you are not taking a large enough dose and therefore are still in great pain then it's pointless.

pmr pain is very specific and you say that you are still in so much pain, yet you also say that you suffer from arthritis and a compressed spine, so I need to ask you, the pain you are in, what condition is it from. I ask because if you are taking the correct dose of preds then most of your PMR pain should be well under control and therefore is some or much of the pain you're experiencing from one or both of your other conditions in which case what medication are you taking for them and are the doses high enough to make a difference.

one thing I will say is, you say you wish you were not on preds and had just put up with the PMR pain, well believe me uncontrolled PMR pain would have just got worse and worse and you would have become more and more disabled as the inflamation in your body would be flaring away. Then of course there's the damage the inflamation that you cannot see is doing to your inside.

i believe that your problem is unchecked and uncontrolled pain. Pain is very destructive, it controls our mind to the point that we find it very, very difficult to function properly as the pain consumes our mind and dictates what we do and that's why it is so important that we firstly take a dose of preds that's large enough to get our inflamation under control and keep it under control. Then it's about reducing our dose so that the dose we reduce too is also high enough to cover and then keep under control the current level of inflamation.

many patients find the standard drop of 2.5 simply too much and therefore only drop by 1mg on every reduction.

this crying is all to do with depression, stress, anxiety and fear and believe me we have all been there and of course these emotions are not helped either because the preds make these emotions worse.

when you were on 20mgs were most or nearly all of your PMR pain under control? Now you are on 19mgs is the relief from PMR pain as good as it was when you were on 20mgs? If it is, that's great and it is now importent that you stay on 19mgs for a goid 6 weeks so that the preds can really do their job which is to keep the inflamation under control, and don't be tempted to reduce further until you really feel the current dose has done its work. Then reduce by 1mg every 6 weeks Until you get down to 10mgs and then follow Eileen's slow and almost stop regime.

i suspect that your PMR pain is under control but you are suffering from a side effect of pred which is mixed up emotions made worse because your other medical conditions which are also very painful ones are not being treated correctly and therefore it's that pain that's not controlled.

if I am right you need to visit your GP or rheumatologist and ensure that they prescribe medication for them.

you are all alone apart from your dear cat and that must be so very, very hard but I am sure your cat provides you with much needed companionship.

as a practicing Christian I find it very hard to sometimes keep my faith but please do not despair and do not loose your faith. You are right this well be a long journey and in some cases it can be a very long journey but as the inflamation recedes and the dose of preds gets less we do begin to feel much, much better. But, it's not about getting to the finish line it's about managing correctly this condition until it decides to fizzle out.

Sharon, do let me know if I'm right regarding this pain issue and in the meantime stay strong and take care. All the best, christina 

Hi, I was so sad to read how upset you are, how much pain you're in and how lonely you feel. I guess that every one of the brilliant contributers to this forum have been just where you are now at some point in the past few years. I promise it does get better. Right now it seems that you're trying to deal wtih two conditions - each of them more than enough to handle at one time. I can't advise you about Pred. except that it seems to be the only med. that will work with PMR. I'm sure others will help here. Does your doctor know how miserable you feel? If not you should talk to him/her. You are seeing him soon for injections so that may be a time to do it. Keep in touch. Kind thoughts. x

I'm sorry to hear you are in such a bad place -  but having read the posts already put up I have a very basic question to ask:

When you were put on to 20mg of pred did it make a significant difference to how you felt? 

If it didn't improve your pain noticeably then there may be no point being on pred at all - the criterion for using pred in PMR is a 70% improvement in your symptoms within a short time. For almost all of us on this forum that was the case and for us being on pred is worth the downsides - and believe me, all of us have experienced at least some. I put on about 40lbs in weight - I have lost it all again though by being very disciplined and cutting carbohydrates right down to no bread/cakes/snacks, I eat meat, fish and vegetables and salads and even then not a lot of those, a portion of meat or fish is 4oz for dinner and often none at lunchtime. I grew a beard with one form of pred - that has gone on another sort. But unless you are getting benefits from taking the pred that make it worth it - you must discuss with your doctor how to go about this. Obviously losing weight would be helpful to you - it can be done, even on pred, but it does require a great deal of commitment and discipline. You do need to move - if you can't do the beds and vacuuming don't do them but do try to walk a bit every day - because movement is good for arthritis and also for PMR. Getting moving will make the pain better in the long run.

I would also suggest that you consider looking for a Bowen therapist locally and give that a try. There are other things that can be there alongside PMR but which do not respond as well to pred - although the pain and other symptoms can be very similar to PMR. A lot of people on these forums have benefitted from a few sessions of Bowen therapy - you will know within a few sessions if it will help you so it isn't an open-ended committment that will cost the earth. It may not "cure" your pain but, like using pred, it could make it less. It is a very gentle procedure and if you have never had it before then you might think it was hooey - I promise, for the things it works for it is great!

And PMR does get better. I have had if for 10 years, for the last 5 years I have been on pred which has helped a great deal except for three years ago when I had a major flare. I was on crutches and could barely walk a few hundred yards. Since then I have used the very slow reduction method the others have referred to and have got from 20mg Medrol down to 4mg of prednisone. I can walk for a couple of hours now at my own pace. I still have PMR - but it is well controlled and I have almost no PMR pain. I do have other pain, from myofascial pain syndrome which is often found alongside PMR and has similarities but is different. I need a couple of sessions of Bowen.

 

I am so sorry you are having to go through this. I, too, have had the side effects from prednisone you are experiencing. I was diagnosed January 19, 2015 and started on 20 mg of pred. Have had a hard time reducing also. After ups and downs of doses, am currently at 15 mg. but that was not without huge struggles at each change. I have to say that I do have good days now and bad days. I think I have myofacial pain syndrome which is very hard to deal with. Having more pain issues than PMR is at times overwhelming. I am way overweight and pred has not helped. This forum has been my hope!! These people do know and understand what you are going through because they have experienced it. Last Monday, I felt exactly as you described in your post. Even though you know your emotional state is largely a side effect of prednisone, it is hard to deal with. But it does get better. Hang in there! You are not alone and not without hope! I read this forum daily and always feel grateful everyone who contributes. Best wishes to you today. You are not alone!

Hi Sharon,  I live in USA too --- West Coast Oregon/Washington.  I know how you feel, and how miserable it is to deal with PMR.  I was diagnosed with PMR in September of last year, and had since 3 VERY painful flares when trying to reduce with 2 1/2 every time.  3 months ago, I was not able to get out of bed because of horrible backpain,  and my GP put me on 30 mg with a slow weekly reduction of 5 until I would reach 20 mg.  When I reached 20 I followed the advise of this forum to reduce 1 mg a month.  I am now on 17 and doing okay.

I still cry easily when I am trying to explain to my son that I am not the same person I used to be.  I live alone, but close to my family, and I take care of my 10 year old granddaughter which gives me a purpose in life.

Sharon....most of all......you are not alone!  Let us know your worries and pain you go through.  Here is wonderful, educated and caring advise available for you.  PMR is life limiting but not life threatening.  Just such a change in what we were used to and this transition is tough to take and often overwhelming.  Kind and caring thoughts, Erika