New to pmr

[Angelabur]

Hi just been diagnosed with pmr and struggling a bit, on prednisolone doesn't seem to work all the time just had bad painful night and getting out of bed nightmare just wonderd has anyone experienced this?

[Cyclegirl54]

I’m in the same position but this is a great informative and supportive community . Exactly what is required when the going gets tough . All the best 🙂

[Angelabur in reply to Cyclegirl54]

Thank you for your reply it does seem like a minefield at the beginning and great to speak to people who know just what it is we have

[CT-5012]

Welcome, here is a very good place to be lots of information and help. It sounds like your dose is maybe not enough. More information would help. The aunties will be along soon with their experience and excellent advice. All good wishes. 🙂

[Angelabur in reply to CT-5012]

Thank you for your reply really appreciate it

[Charlie1boy]

I most certainly did after first starting on prednisolone.

Was on 20mg for six days, then upped to 30mg by my GP to clear out the inflammation. That certainly worked, and I have gradually been able to taper slowly to 5mg after just over three years.

As you have just started with PMR (big sympathy for that), I recommend you get a copy of Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide". Also Google pmr-gca-northeast.org.uk. They have an excellent booklet Livingi with pmr& gca. The information from these two should help you to cope with this condition.

One final piece of advice from me! Give yourself plenty of rest; if you don't then the PMR is likely to come back and bite. Secondly, take your taper really slowly; listen to your body, and when the time feels right, then that is the time to taper down. As you will surely gather from this site, most flares that people suffer result from trying to reduce the prednisolone too quickly.

Keep in touch here, and you will get lots of good advice and support.

Good luck

Paddy

[Angelabur in reply to Charlie1boy]

Hi have purchased that excellent book I seem to have a good few days then get really stiff and lot of pain really odd as had it last Saturday night as well so does it go backwards every 7 days great to hear from you

[Angelabur in reply to Angelabur]

Should have said on 15g pred

[DorsetLady PMRGCAuk volunteer]

Hi Angela,

Welcome. As others have said maybe your dose is not quite high enough or you are trying to do too much. The fact that you have problems on a Saturday night, if I read you replies correct, may indicate that you are over exerting yourself either on the Saturday or the Friday.

Have a read of the attached it may help you understand your illness and how to manage it a little better.

healthunlocked.com/pmrgcauk...

Take care

[PMRpro Ambassador]

The pred hasn't CURED anything, it is managing the inflammation that an underlying autoimmune disorder causes and which leads to the symptoms of pain and stiffness which we call PMR. Every morning this disorder causes the body to shed substances in the body which cause a new lot of inflammation and that will continue every day at some level as long as the autoimmune disorder is active. This is why you are stiff and sore in the morning until your pred dose starts to work after a couple of hours. The antiinflammatory effect of pred lasts from 12 to 36 hours, depending on the person. If you are at the shorter end then the pain will return in the morning where others where it lasts are not too bad. You can sometimes improve that by splitting the dose - perhaps taking 2/3 in the morning, the rest later in the day, a couple of hours before you would expect the pain to return.

The pred only relieves the inflammation - it has no effect on the autoimmune disorder, that continues to chug along in the background, attacking your muscles and making them intolerant of acute exercise. If you do too much you will feel as if you ran a marathon without training - and it will take longer than usual to recover. So, like DL, I suspect you are simply trying to do too much on a good day and it is followed by a bad day. You have to learn to pace and rest appropriately.

healthunlocked.com/pmrgcauk......

is a post with links that explain all those aspects in less starchy ways.

Someone has mentioned the NE charity site

pmr-gca-northeast.org.uk/

where you will find a shop selling their book that was mentioned as well as loads of articles in their Newsletter archives and stories from people with PMR and GCA.

Just a question - your nighttime back pain: when does it start?

[Brizzleben in reply to PMRpro]

Hi PMRpro: thank you for the above: I'll follow up those links. I've noted your comments about the PMR disorder shedding substances into the body which cause inflammation and would like to learn more. Is it covered in the Gilbert survival guide, (on order as I write)?

[PMRpro Ambassador in reply to Brizzleben]

Probably not - more my field!!! But there isn't much more to know unless you want to do a medical science degree.

[Brizzleben in reply to PMRpro]

I'm not in the degree league, sad to say. It sounds like I'd just do better following the diet and lifestyle advice rather than delving into why it works.

[PMRpro Ambassador in reply to Brizzleben]

If you ask a specific question someone may be able to answer with a simple explanation - no promises though.

[navejasjoe in reply to PMRpro]

Thank you PMRpro for your informative posts. I read them to my wife all the time and you make so much more sense than any of the doctors my wife has seen, although her current rheumy seems more knowledgeable about PMR than the others.

Joe

[SheffieldJane]

Hi Angelabur and welcome to the forum. 20 mgs was my magic starting dose, within days my husband no longer had to pull me out of bed. If your 15 mgs is a bit low, inflammation will be getting through and building up. As I understand it in my layman’s way.

[Angelabur in reply to SheffieldJane]

I rang my rhumetolagy helpline and asked could I take 20 mg they said no I have appointment at clinic in 3 weeks also have to have x ray on back and more blood tests my consultant seems to think I should be more pain and stiffness free than I am so not sure what is going on i know what you mean about doing too much and suffering the next day I have had the pain and stiffness all day today hope for better day tomorrow thanks for your input

[Kath567 in reply to Angelabur]

I can relate to your experience. The nights and mornings are so difficult. I was diagnosed with PMR in September but then the rheumatologist later questioned the diagnosis. I had an undiagnosed jaw infection a month later (which took 3 months of agony to diagnose!) which muddied the waters so to speak. After a rather fast recent taper, I am back to these ?PMR pains. My rheumatologist wanted me to stay on 10 mg...my son has to carry me downstairs in the morning...no way! I increased it anyways but obviously not enough. I see him tomorrow and he’s going to get a piece of my mind. How is he justified in letting you wait 3 weeks in pain? I am going to start holding these doctors to account for their lack of care.

[Jamie345 in reply to Kath567]

I totally agree with you be interesting to see what he has to say for himself!

[daworm in reply to Angelabur]

I was in same situation, 15 wasn't enough, I asked to go up to 20 and that worked better for a couple weeks, then I dropped down...

[SheffieldJane]

3 weeks is a long time to be in pain. I hope everything gets sorted out for you soon.

[Oldman-1]

Hi Angel, You hit the nail on the head with pain and getting out of bed. One min I was fit woke up and felt like an RTA. That was Sept last. At my insistence with GP`d, I got to see a consultant. Got the right amount of steroids and am very slowly tapering down. There are some minor flare up`s, but generally, I`m good.

[daworm]

No, the pred isn't always the miracle drug it was the first few days, my PMR seems to cycle and slowly build to a bad couple of days then starts again...but I'm sure it would be horrible with out it...and if every day is bad you need a higher dose..

[Jamie345]

Hi there I was exactly the same as you seems to take quite awhile I'm afraid but it will ease but not go away, I hope it helps you as its so painful only comfort is that most of us have or still are in your position, good luck I'll say a prayer for you.