for the past year i have suffered severe pain and stiffness in my upper legs, thighs and upper arms. i have been referred to a rheumatology and hav at last got an appointment for july. my Dr repeatedly gave me pain killers of all description which rendered me unconcious most of the time. my husband had to do everything for me and i felt so bad i thought about suicide. i did not feel comfortable telling the Dr this but in hindsight it was when the Dr actually seem to take me seriouslly . at first she thought it was fibromialga but looking on this site i realise people with this had good periods and bad periods .i only had bad periods and it never gave up. i then said to the Dr who thought it could be pmr and after blood tests she agreed to check out with the hosp cosultant who agreed to let me have prednisalone. i got the tablets on friday and overnight a miracle occurred, from my husband getting me in and out of bed, up and down of chairs, washing my hair under the shower, drying and dressing me, to me getting up showering and dressed, going out and walking going for lunch and some shopping. I felt so elated I cried when I met people I knew, telling them of the miracle . I was started on 15 gr after 3 weeks my Dr reduced it to 12.5g I noticed the drop I felt more pain and stiffness than when on 15. Last week she dropped me to 11g I am still stiff and sore but manageable. However I do have horrendous sweating and can be very tired. I thought I could put up with this as it is preferable to what I had before but it is horrendous, I am soaking wet, feel like my whole body is on fire and yet my skin is really cold. Is this normal and is there anything that will help and is the Dr reducing at a proper rate as it scares me to go back to were I was 2 months ago. This is the first time I have gone onto a forum so I beg forgiveness if I make mistakes. I don’t know if I get messages back or not so here goes and thankyou in advance to any one who can give me any advice .ps I am going away for week end first break for a year so I might not be able to respond till mon xx
Hello
I am also very news to this forum , welcome . You will find the support and advice so welcoming . I too have shared your symptoms and thought that there was no light left at the end of the tunnel . The advice and support I have received from others has kept me going since my body was taken over by 'aliens'.
I had a wonderful result like you when I started on Pred in April and have experienced horrendous sweats like you have described throughout my journey .
I took it upon my self to try and reduce from 20mgs too soon ... Which put be back on 4 occasions . I would advise that you refrain from any reduction until you have been symptom free for at least 6 weeks .
my experience has shown that I ran before I could walk ...
I am hoping that you continue to feel better in yourself , and use the forum for support as its lovely to know that you are not alone .
take care
Helene
Hello roemary. just short post i would say you are reducing way to fast, and yes the sweating can be down medication & allso the fatigue can be part of the journey.I am thinking you will get plenty of good advice so stay tuned.take care and Slowley does.Dave.
Taking pred initially really is like a miracle. I had the awful sweating like being in a warm shower, it was horrendous. It has got much better recently I don't know if it is because I have changed my pred tablets or not. As Helenemiles says take care in reducing too fast. It can come back and bite you. Don't reduce until you are comfortable with the curent dose. Otherwise you may land up with a flare and then have to increase again, which means you have gone through unecessary pain.
Hello rosemary, I think most of us have been in your situation. Pre diagnosis I cried and cried because I was in so much pain, then into my 4th hour of my very first dose I cried and cried as I was so relieved that the pain had gone and I knew there was hope for a future.
but let's talk about your current treatment. Firstly by reducing you so quickly through the doses your GP has proved one thing and that is the condition you have responds to preds, therefore now that fact has been established they need to instate the correct treatment care pathway, and zooming through the doses at high speed is not the way to go. Please look up the Bristol PMR plan. Any Dr worth their salt will use this plan to treat you until you get to the 10mgs stage. That's 15mgs for 6 weeks, 12.5mgs for 6 weeks, followed by 10mgs for anything up to a year. I was on 10mgs for 6 months. Some patients even find this reduction regime too severe and can only successfully reduce by 1mg every 6 weeks.
once at 10mgs we then like to emply Eileen's dead slow and almost stop reduction regime which envolves introducing the new reduction dose very very slowly.
if your Dr persists with this rapid reduction you will end up with constant flares and yo yoing up and down the doses with each flare harder and longer to get and keep under control.
many of us have learned that dr's are great but when it comes to PMR and preds most have little or no idea and we have to learn to listen and in turn treat our body's in a way that's best for us.
welcome to the site, it's very important that you ask all the questions you have plus research this condition so that you are well informed. This condition will not kill us but it will be around for as long as a bad smell, so prepare yourself for the long haul. All the best, christina
"Normal" - not unusual with PMR and pred.
I'd say your reduction is too fast - ask your GP to look at the paper you'll find as the "Bristol paper" in the post this link will take you to
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
This is a top PMR expert (Kirwan) and his colleagues writing for GPs to help them manage PMR and GCA better. They keep you at 15mg for 6 weeks or until the symptoms are well managed if it takes longer. Then 12.5mg for 6 weeks. This clears all the inflammation out and then you reduce to find the lowest dose that gives you the same result as you got with the 15mg. It's written for your GP so she shouldn't be iffy about it.
Have a look at the other links - especially the first one to PMR-GCA NE where you will find a lot of info and they have an info pack for new members - you don't have to be i the NE to join!
Are you sure you aren't doing too much because you feel so much better? You must rest to give your body a chance. The underlying illness that causes the symptoms is still there, the pred can only manage the symptoms and the autoimmune part is what causes the sweats and fatigue.
Wear layers, keep your rooms cool, have a fan handy. You have to learn to pace yourself and know your limits - and if you do less the sweats are also often less. For you now with PMR even an ordinary amount of effort is like being a lumberjack - you'll break into a sweat and drip merrily. REST, REST, REST - and learn to say NO.
No apologies needed - everyone got here for the first time at one point. Have a lovely weekend away - and REST!!!!!!!!!
Be kind to yourself... I agree that you have reduced to fast... we have all been there !!
If you can, make a day in the week that you pamper yourself with a whole day in bed resting...watch V or movies or listen to music... don't read because even that can make you sweat... just do nothing.. have some sandwiches or some consomme in a flask or some crackers and some fruit and cheese... just simple nibbles. I have recovered from overdoing things this way quite often and have enjoyed the following day immensly. I even had two days in bed after a job in Ireland last year... the flying knocked me out!
Anyway you can at least be pretty sure you have PMR by what you describe.
I do wish I could get some decent sized sweat bands that dont pop off my head because the sweat running into my eyes really hurts.Its only my head that sweats but it like a shower as you say...so much its ridiculous.
Welcome, I am fairly new to the forum too but find it so helpful and reassuring. Such a shame the doctor took a while to try you on the pred.
There are some lovely helpful and knowledgeable people on here so you are amongst friends. Hope you have a good weekend and come back refreshed. Kay
I feel for you, and I have been there trying to reduce too fast. I am presently on 15 mg of Prednisone from 16 before. Reducing only 1 mg a month. I tried to reduce from 15 to 14 after a week and it did not work. 2 1/2 would be too large a reduction for me.
The fatigue can be tough to take because we are not used to it. We like to be busy!!! Rest is best! 
Dear Rosemary, The hot sweats are underestimated (often called 'night sweats' but they occur all day for most people. Temperature changes, sometimes up to 103 degrees - mine were 20 times a day during the worst of last summer's heat - are exhausting and my doctor was shocked, and said she had never heard anything like it (mainly because I think people are not complaining nearly enough). I think you should take your temperature and count them during the 24 hour period and that way your doctor will get a clearer picture. I am glad you have been properly diagnosed at last but you might get a relapse if you try to reduce the prednisolone too quickly. There is a sharp dip in the early weeks of prednisolone treatment where the body's own cortisol shuts down. I was told this by a doctor who maintains a higher dosage for longer to compensate. Hope you are soon feeling better.
I am not a doctor but I highly suggest you see your rhumatologist again. I also suffered for more than 2 yrs with PMR. In 2012 it started with my thyroid. It was overactive. I also got PMR at the same time but didn't notice it because of thyroid issues. Thyroid issues depressed me and I felt I was losing it. In 2013 I demanded a RA doctor. I was given 15 mg of Prednisone. I stayed at 15 for almost 6-7 weeks. Tapered down to 12.5 after that. I feel you needed to stay on 15mg much longer. Taper slower! Be your own advocate! Somebody has to! I too felt like a million bucks when I got on Pred. It was a miracle. I hadn't done much for months. I got out on day 2 and rode my bike 33 miles! Incredible!
You sound like yours was really bad if your husband had to help you that much. Wow. The first night on the Pred I must have been to the bathroom 8 times, I couldn't sleep at all. I did get use to it. I'm ok now. I'm on 5mg indefinitely. I've tapered down twice now. By the time I got to 0mg it came back in a week. I'm in my 2nd yr and somewhat happy at 5mg. Just taper longer. Don't rush it.
After a month to 6 weeks of very painful Hips,Thighs & shoulders visited my GP 4th. June 2015. This was after a fortnight in the Malta sunshine, thought heat would sort out the aches & pains, wrong, wrong wrong. Described my symtoms & after a breif examination I first heard the words Polymyalgia Rheumatica, shock horror. Blood test confirmed the preliminary diagnosis last monday the 15th. Straight on 15mg. of Pred that morning + 2 types of bone protecting drugs. Improvement straight away, I am having bad nights & early mornings with good late mornings/afternoons & evenings, here we are early evening Wed.17th. & since Monday I have noticed a small but significant improvement, roll on tomorrow. I was up until recently an extremely fit 71 year old, can't wait to get back to my golf, wood cutting & all my other physical pastimes.
Richard I am so sorry you have been diagnosed with PMR but at least you have now got pred to help the pain. One thing don't expect to carry on life as you did before, PMR is life changing and you will find you need to give into it. I was led to believe by my doctor I could just take pred and everything would be back to normal, I then discovered that this was not true.
Hello richard, sorry to hear you have joined the club. Please look up the Bristol PMR plan. It will give you some idea on how this condition should be treated. When you get down to 10mgs I suggest you then follow Eileen's dead slow and almost stop regime. I'm afraid there are no quick fixes with this condition and it is very important to not reduce too quickly or by too great a dose reduction. I would suggest taking a daily supplements of vita, calcium and magnesium, RDA levels. These will all help against bone loss.
please be careful re the bone protecting drugs, has your Dr tested your current bone density to check if you really need to take them. They can result in long term problems, so do be careful. All the best, christina
Hi Richard - just to reiterate, don't rush back to your physical pastimes: pred is MANAGING your PMR, it hasn't cured it. Until it decides to go into remission you will need some pred - and you have to do a bit of management to match the pred. Your muscles are intolerant of acute exercise and will continue to protest if you overdo things, Think of your muscles as being totally untrained for the moment and now you need to re-train them at a VERY slow pace plus allowing them at least 2 or 3 times as long to recover after using them. You will be able to do more if you rest frequently and know your limits and stick to them. And never think you can "work through this" or that "my muscles are sore, but a bit of exercise will sort that out". You can't, it won't. Don't try to rush it.
Given your active life I would insist on a dexascan to be sure you really need anything more than the calcium and vit D supplement that we all need. That might be enough for the moment. If your GP is sticky, there are a few places who will do one privately for about £50 - well worth it to know for sure.
And some reading material:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
the first post gives a load of links, the NE of England support group site is particularly good with a couple of resources you can buy for all the information you need in a small pack (DVD and booklet). It's all on the forums but takes a long time to find! There are 2 others in the UK - all 3 are different in format and style but all friendly and useful.
But having done your reading - come back and ask any other questions you may have.
"The treatment is working so well we are going to discontinue it!"
Sigh.
A familiar story on this forum! As you will have gathered from the other posts to this forum, when your pain and stiffness returned at 12.5 mg, this was a hint that further reduction would not lead anywhere good!
As Eileen says, the point of the prednisone is controlling the inflamation and pain. It does not cure the underlying disorder, so you have to keep taking prednisone until that dies out. You are not winning anything by taking too little pred to control the inflammation- you just have BOTH the ill-effects of inflammation and the side-effects of prednisone. And the pain.
It is worth decreasing the dose to test what the effective lowest dose is. But you have found that 12.5 or 13.75 or 15 may be needed for you. A lot of doctors seem to think the goal is "getting off prednisone" (or at least reducing the dose) as fast as possible. It is not clear whether you have talked to your doctor about the response you experienced- she may be willing to increase to 15 and then reduce much more slowly.
There is no need to be in extreme pain- or much pain at all (except for those who can't take prednisone)- with PMR. That part of PMR is treatable!
Best of luck!
Thank you Helene for you support .I have had to go away for family things and this is my first chance to look at the forum and also find out how to work it. Glancing down the posts the same things seem to crop up reducing too quick and need to take things easy. i am seeing the consultant next week and hope this forum will give me the ability to ask the right questions when i am there. hope you are well
Rosemary
Hi David thankyou for your contribution . my husband is really supportive of me but it is great to hear others who have experienced the symptons and know that i am not going mad.
many thanks Rosemary
Hi ptolemy I am going through a number of posts and am seeing the same things croping up . being new i really dont know how this all works and who can see what and i don't want to be repetitive . i will ask the cosultant next week if the pred tablets can be changed and will that help the 'personal tropical monsoons' many thanks Rosemary
Hi Christina it is great to read these posts as it gives me the information i need when i go to the hospital next week . i had a chest infection last week and the doctor told me to go back up to 15 mgs for a couple of days and then reduce back down by one a day to 11 again. i am not sure if going up and down like this is good. is it normal to have very swollen legs feet and ankles with PMR. thankyou for the support