What to expect???

Oh dear, oh dear - What  question!  There are hundreds of people on this thread and they all have their own story.   I fear you are going to get many, many e-mails with this one.  Start reading this thread from the beginning, but don't get depressed, there is a lot of help out there.  

It has taken almost 3 weeks for my aches and pains to almost be gone . At the beginning of taking medication was away and doing a lot of lugging stuff about and was told by physio should realy rest up a bit so probably why delay in sudden improvement as others appear to have . Take medication for acid reflux for some years and forgot to take one morning ,worst ever 'heartburn' I have ever had so shan't forget again . Appear to be suffering from very sore dry mouth now , but seeing doctor for blood test results today so shall ask about that and bone density,and several weeks before anyone thought of poly mialga I was sent to a& e re string of floaters and white blobs in my right eye .Given the ok but will also discuss with doctor as I didn't know about The eye problem that could happen .I realise now that I have been like this for years and the doctor and I have always put it down to getting older .Amazing not to be so achee any more.Good luck

Hi Julie

If you read the posts from everyone here you will get an idea of what to expect. We are all different so will respond differently to the medication. Some of the side effects are common with alot of us.

Try and keep positive, we all have our bad days but it helps to keep a positive mind. I am thankful that we have medication that can help this awful condition.

I have found this forum very helpful as when I was first diagnosed a few months ago I had no idea of what to expect.

Hi Julie. The general rule is that within a few days of taking 15mgs of pred, you should notice about a 70% improvement in pain levels. If you achieve this it more or less confirms the diagnosis of PMR and not fibromyalgia. If it is PMR you can expect to be on pred for at least two years. Yes there are many side effects. A lot of them start to appear when you have been on pred for 3 mnths plus. The one most people worry about at the beginning is weight gain and my advice would be don't wait until you put on weight before watching what you eat. Start straight away to eat a low carb, low sugar diet. I am talking from personal experience here as I put on 3 stone. I am now really struggling to lose it. This forum is fantastic. Any strange symptoms you get, post them on here and you are almost guaranteed to hear from people that have experienced the same thing and have helpful advice about what to do. Hope you get pain relief soon. Remember to rest lots and pace your activities with loads of breaks. Take care, Debbie

Julie, well if you haven't already experienced about a 70% reduction in your pain after 4 days, then you're having a bit of a slow response to your starting dose.  However, having said that, occasionally a few people do come along saying that it has taken longer for them to feel the difference.  We are all different in both our response to the illness and the treatment.  It is important for you to have plenty of rest at this time to allow the steroids to get complete control over the inflammation,  I do hope you will start to feel an improvement in the next week or so.

Julie - Welcome to the 'club' you will get a lot of support and very practical advice on this forum, but remember we are all different and react in slightly different ways to preds and the other meds that go with them.  Personaly I felt 95% better within a few hours of starting - but don't think you can go back to the same level of activity and energy pre PMR.  Others have said it and I will repeat-  take it easy and don't overdo it!  Best of luck

If it is PMR of the sort we discuss on this forum (there are forms of PMR due to other causes) then usually a 15mg daily dose will achieve a reduction in symptoms of about 70% within a couple of days. Fibro will not respond to pred. 

You may be very lucky - for some people almost all the pain does disappear but they really are a minority. The improvement should be noticeable - it it isn't then a diagnosis of PMR must be put in some doubt although some people need 20mg to start with, especially, it is now being felt, if they weigh more. For most people the stiffness improves dramatically, any joint pain due to the bursitis that often accompanies PMR may take much longer. For me the hip and hand/foot pain took a few months to go altogether. 

If you had raised inflammation markers I'm surprised the doctor included fibro - it doesn't usually come with raised ESR and CRP - that is a primary difference from autoimmune disorders such as PMR, RA and so on.

And as someone else has said - if you felt better immediately and then started doing the things you haven't been able to do and then found you had pain you may be masking the true response to pred. Being on pred DOES NOT do anything to the underlying disorder that causes the symptoms that we call PMR. Your muscles are still intolerant of exercise and will take a long time to recover if you overdo things so if you carry things, do the cleaning and so on the muscles will still hurt a lot. You MUST also rest and learn to pace yourself.

Thank you all for your replys they have all been really helpful. 

Hi Julie

I'm on a different time zone to the others so my comments come later.  I found that the excruiating pain I felt disappeared to a underlying general pain in shoulder to elbow and hip to knee after about 2 days of 15mg of Pred.  This underlying pain seemed to stay with me for about 6 months and I tried to reduce in about 4 months - had to change timing of having the Prednisolone as my Dr gave me split doses to start with.  I now am on 8mg ( 6 months later)and I have noticed just lately after having treatment for brusitis in my shoulder that the pain has become less and less - it is hard to describe but I feel the PMR is abating.  I am going to try and reduce again in a couple of weeks to 7mg where I'll stay for a month or so depending on how the muscle sensation feels before I reduce again.  I developed a glocose resistence just recently and have gone on a vegan diet (as suggested by a reverse diabetes book) and have found I've lost 2kgs in 2 weeks of the 5kg I put on in the beginning also my sugar seems to be holding - not perfect as it was before but around the 8 mark(Aust measurement) so I'm happy enough.  I hope this helps as some seems to have a much worse time than I did and others much better we all seem to respond differently.  I have also just changed to a Pred form Lodotra as even though it is much more expensive is a delayed release form and therefore I can take it at 10pm and it is ready for the early morning pain - it seems to be working very well.   EileenH is a wonderful source of scientific information and knows her stuff well