I am supposed to start 20 mg of prednisone today, I'm hesitant because I feel so sluggish and flulike I'm afraid it'll worsen! My seed rate is 42, @ July I started having extreme bilateral biceps pain, wrist and arm pain-tired beyond! I do not want to have PMR, I do not want to be on steroids 
I have celiac and already have problems with immune system, but I could sleep for days if I didn't have responsibilities like work and life lol . I need to see a rheumatologist? I guess? Does this really go away in 2 years after taking steroids for 2 years!?? Gotta be another way??
Hi kathie
From my understanding if you do have PMR the preds should relieve the pain within 24 hrs and hopefully pain free within a few days, if it is not PMR the preds will not help you. My advice would be to take them and see how things go over the next few days and if the pain continues advise you doctor. PMR can last for a couple of years (if you are lucky) but you can never get rid of it completely, it goes into remission. Its something we all have to live with on this forum and you will find that over time you get to accept it and this forum will help you.
Good luck Dave (tavidu)
I too am newly diagnosed after suffering with pain for two years. I started on steroids on Monday and the pain is nearly gone. I don't like the idea of being on them either but if they can give me back my quality of life then it's worth it. I suggest you give it a try my friend. Good luck and gentle hugs.
For goodness sake give it a chance. Think yourself lucky someone has given you the possibility of relief. Some of us have had to deal with the pain for years before anyone would accept we had PMR. You will certainly know after a few days of steroids.
If what you have is PMR the pred will make you feel far better - your symptoms are consistent with PMR, the pred will be another piece in the jigsaw to confirm that diagnosis.
None of us want PMR, none of us want to be on steroids - but that's the way the cookie crumbles I'm afraid. If you already have one autoimmune disorder then you are at a higher risk of developing another - looks like you did.
If your GP has his suspicions this is PMR and the pred confirms it then there is no real reason to see a rheumatologist. In the UK you would be managed by a GP in many cases and it is often easier to deal with when you have easy access to your doctor than when you have to get an appointment with a specialist. Every health system is different of course.
No, I'm afraid it doesn't go away in 2 years after taking pred. PMR comes when it wants and goes when it wants. PMR is just the symptoms of an underlying autoimmune disorder. It often does go into remission but it can be anything from a year or so to 6 or more years before it does. For about a quarter of patients it is within 2 years, for about half 4 to 6 years and for the rest even longer. Some people need some pred for life.
And no, there is no other reliable way to manage PMR. The pred merely manages the symptoms - it isn't doing anything about the underlying disorder, it is allowing you a decent quality of life in the meantime until it goes into remission. It is like the gluten-free diet that manages your coeliac disease - stop the gluten-free diet and the coeliac disease symptoms will come back. You can help a bit by including anti-inflammatory foods in your diet such as oily fish, turmeric and garlic but that is a help, not a cure. There are people who will claim gluten-free helps - obviously not for you. Or dairy-free. Or a strict vegan diet. There is no proof for any of them. Nor for supplements.
For some people the PMR is a precursor to GCA - and if you go on to develop that you will have to use pred to avoid the risk of loss of vision, either partial or total.
I'm sorry if this sounds harsh - but there is no point gilding a lily. Pred is the mainstay of management of PMR and it does make you feel a LOT better. The fatigue remains but it too will improve with pacing and rest. Follow this link to find a post with links to a lot of other useful and reliable information. When you have had a good read some back and ask any questions you may have and someone will do their best to help. The one promise I CAN make is that you are not alone.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Hi Kathie.
Just a little bit to add. It is my understanding that you can be on steroids for up to three weeks and still stop them with no problems. It is unlikely that you will suffer the worst of the side effects (weight gain, gastric problems etc) in that time. By then you will know for sure whether you have PMR or not. If it is PMR, there is no other way of controlling the disease. Only steroids reduce the inflamation enough for us to function. If you leave PMR untreated, you are running a higher risk of GCA (Giant Cell Arteritis) and as the unfortunate people with that condition on this forum will tell you, you really don't want to go there. Don't want to depress you further but the steroids will only help if you slow down and get plenty of rest. If you try to carry on as normal, the pain will return to haunt you! One positive thought. If you have PMR this forum is amazing, giving you information, support, a sense that you are not alone and even, sometimes, a good laugh! Hope you feel better soon. Take care, Debbie
Try the pred, if it doesn't work in a week, you can just stop taking it as it will be very unlikely you have PMR. In my case it was like a miracle, I could actually function again, I still think back to the pain I had and thank god for pred. You already have one auto immune disease they say the chances of getting another are higher than if you have never had one in the first place.
I believe a large number of people never see a rheumatologist PMR is just managed at primary level. It really depends on what problems you have.
No one wants to have PMR, like no one wants to be ill at all. We are lucky that pred does work like a wonder drug for the pain. There are a lot worse illnesses we could have.
The answer to does it go away in two years on steroids is maybe, maybe not. In fact it never actually goes away as such, it goes into remission. They reckon fifty per cent go into remission within four to six years and about a quarter in two years.
Give the steroids a go and see what happens, they may work like magic, in my case it was fifteen hours twenty five minutes!
I can beat you - under 6 hours from taking the pills to being able to walk downstairs, get a cup of tea and walk back upstairs. Then it hit me what i had done! The previous ime it had been on hands and knees...
Show off!!
I will echo what everyone is saying. Like Eileen, after a year (she suffered far longer) of pain I couldn't believe that within a few hours of the pred hitting my bloodstream I was feeling better. On the third morning I got out of bed and was puttering around and realized that for the first time in months I had not had to plan how to get out of bed! My mistake was not knowing I wasn't cured. So I did all kinds of stuff that I shouldn't have, and then when I got to the time to start my steroid reduction it turned out to be more difficult than I expected. Then I found this forum which has been so very helpful. I am gradually getting used to being what I used to call lazy. But if I had a broken limb no one would expect me to do too much physical labour would they? And my current step is learning how to pace myself with all the other activities I've got myself involved in. So if you have PMR and you feel better quickly, just remember that you have to be kind to yourself and take it easy! Gentle, load-bearing exercise (walk don't run!) and a good diet help. For a few weeks I slept much better after starting pred because I didn't hurt so muchl.
Everyone else has covered the important bits - for now. Just take the pred and see what happens.
You'll either feel significantly better or you won't - that simple.
If you don't, you don't have to take any more pred - if you do, you'll develop a love/hate relationship with the stuff.
More on that later if you need it!
HI Kathie,
I know where you are coming from, I was also terrified of taking prednisolone long term however after developing a frozen shoulder and obtaining complete pain relief from an injection for an amazing 8weeks I agreed to start prednisolone when the pain returned. I started on 15mg but could only tolerate for 3days ( couple of nasty falls and brain fog) so dropped my dose to 10 mg ,blood check showed a plateau so dropped my dose to 5mg, my Gp and I expect that I will need this for about a year, I have been great at this dose and am due for my blood check and Gp follow up in two weeks. You get to know what works for you . I did try 2.5 yesterday but felt the pain creeping in at lunchtime so took another 2.5 so know I am not ready to drop again yet. Don't be afraid to try it you will get your life back x
As everyone has said "TAKE THE PRED". It's a no brainer! None of us was delighted to be put on pred, but are we all glad we did?!
The choice is simple: refuse it and be in pain and the chance of GCA or take it and be amazed at the results.
One thing is essential - keep on this site - there is always someone to 'talk' to. Any questions, fears, etc will receive attention.
Good luck
That's a very optimistic GP you have! Only about a quarter of patients get off pred in the 2 years that doctors are so convinced about - about a half take up to between 4 and 6 years, it may be less of course.
You don't say how long you have been on pred, but the longer it is the more difficult a 2.5mg drop will become. The recommendation from top experts is that no reduction should be more than 10% at a time. For many people even that is too much. I too was able to do 2 weeks 15, 2 weeks 10mg and 2 weeks of 5mg the first time I was allowed to take pred. I still think that had I been able to stay at 5mg I might have been OK - but within 6 hours of missing that first 5mg tablet I was in bed, in more pain than I had been before.
As time goes on there is the spectre of steroid withdrawal as your body suddenly has to cope on a lower dose than it is used to and this is especially so when the drops are relatively big. The pain is almost identical to PMR.
Do I also assume that either you are on enteric coated pills or are in the US? The enteric coated pills must not be cut but the ordinary white ones are available in 1mg in the UK and with a pill cutter you can manage 1/2mg drops. These lower drops are very difficult for patients on enteric coated until the illness has fully gone into remission.
I can beat both of you.
2 hours after 60mg, eyes no longer blurred and the light stopped hurting, headache gone, jaw ache gone, bones in face stopped screaming for attention and I could chew again and drink a cup of tea without grimacing.
Yup I am a big show off!!!!!
Was I on a high yes, sight saved.
Eileen has said it all.
Take the pred and see if it works.
You do not want to run the risk of GCA, if you get that boy, 20mg is a dream dose, 40-60mg is the starter for a long haul.
5 years before remission for me who never had PMR just GCA. .
You're also a Rare Bird since you have GCA - officially, we're just run of the mill PMR bods...
Fierce pragmatic FlipDover. You soound just like my husband! ( Doesn't mean you're not right on the mark though). J
Thank you for all of your feedback! I didn't mean to sound obnoxious, but I am new to this. Celiac has been a challenge for 12 years, and when I was told about PMR, also was told I'm pre diabetic-so I through a bit of a pity party for myself. I'm grateful for a lot of reasons and I love life, but it packs some punches! I will listen, I will persevere!! I took first dose tonight and will see what happens, again thank you for your words of wisdom, it's really priceless to have this resource!!