Contributors' Brief Histories

Hi Eileen

Many thanks for your advice - I have no idea how to go to a new post but am more than willing to be 'transported'

My doctor originally put me on two doses per day at 20 mg per day - 10mg in the morning and 10mg in the evening. This was just for a short period - about 1 to 2 weeks - and then reduced it to 15mg per day - at my suggestion we agreed to split it into 3 doses as I was getting pain during the day.

I am extremely fortunate in my doctor - he and I work together - me seeing him every 4 to 6 weeks to discuss my progress.

I am interested in your info 're taking one dose 1st thing in the morning, especially as it may reduce side effects - mine are mania - which I must admitt is a plus for me - keeps me feling good and positive - drives other people mad as I tend to talk at great speed - other side effects are increased appetite - which for this just over 6 stone old lady is a definite benefit as my weight is increasing. Negative effects are - 'thin skin' - even a slight knock on my skin produces a nasty looking bright red patch - looks as though I have some horrible disease - swollen face - does hide the wrinkes though - and swollen feet - not nice but do not last all day - tireness unable to do any physical work for more than about an hour at a time - and the most irritating of all - my right nostil runs like mad for the 1st hour of the day - have to feed my chooks with a tissue stuffed up it!

I realise from reading other posts up here I do not have such serious problems as some others do - my PMR is confined to the lower half of my body - mainly in my legs - but still very painful.

I now know that to reduce by 2.1/2 mg was too much - Ouch! - and have gotten some 1mg meds from my doctor and so will attempt to reduce dosage by 1 mg a day - and take your advice and take 2/3 in the morning and 1/3 at night.

Again thanks for the info - and Jill hope your are feeling not so scared now...xx

magi

At the top of the page (scroll up) the top line is bright green with Patient dot co dot uk, the next is dark green with Home, Wellbeing etc and the next is grey and has a green dot followed by "Start a new discussion" and "My discussions".

Below that, in red, you'll then see Discussion forums > Conditions P > Polymyalgia and GCA.

Click on Polymyalgia and GCA and it will bring up a new page with, in bright green I think, "Start a new discussion on polymyalgia."

You need to give your new discussion a title (if it is a question that'll do fine) and then use the box below to write your post. Think that's all right - it's ages since I started a new thread!

Your side-effects sound normal enough - but I tell you one thing: lots of would like to be able to do an hour of anything physical!!!! Pacing is the name of the game, little and often-ish with rests between!

Eileen

Hi Magi/Eileen,

Here's a shortcut to where Eileen was describing patient.info/forums/discuss/post?groupId=1708

Click the link and as Eileen describes add a title, post comment and click "Post your discussion".

I would've done this sooner but just came across the post. If anyone ever does have any queries or needs help send me a message by clicking the message button next to my username to the left of this.

Hope this helps.

Alan

Hi everyone I could not find where to post this as I wanted to let you all know that after 2 and a 1/2 years I am now off the steroids and am in remission.

Aged 67, newly diagnosed. On 20 mg Pred. Good/bad days. Still working but retire next year. Living alone in a flat but moving to sheltered housing on retirement, not so scary. I live on the Isle of Man so would love to know of others wth PMR on this Island. Not found anyone else here so far but heard of others who have recovered. Loving the advice and help on this forum. Despie being in the nursing profession I had never met anyone who has this so am learning a great deal about PMR now. Thanks to everone on this forum.

Hello Greatgrandma

I'm sorry to hear you've just been diagnosed with PMR, and I hope those "good" days soon overtake the "bad". Just don't overdo things on a good day (difficult when you're working, I know) because, in our experience, the inflammation of PMR does tend to come back to bite if we don't learn to pace ourselves.

Unfortunately, there aren't any PMR support groups on the Isle of Man as far as I'm aware, but at least we have this forum and the others you'll find on the pinned threads here, so at least you don't need to feel quite so alone with this debilitating and painfull illness - a problem shared etc!

All the best, and do keep in touch - we'll try to answer any queries you may have from our combined vast experience with both PMR and GCA.

MrsO

Hi G'grandma - at 67!!!! Don't envy you I'm afraid - being a granny at 47 was bad enough ;-) Welcome but sorry you need us.

I don't know how many with PMR there are likely to be on the island - your population is 85,000 and the incidence is about 100 in 100,000 people over the age of 50 so if you have a lot of older people on the island maybe there are 10 to 20??? It is a popular place to retire I suppose. On the other hand - about half of people over 75 have it.

How about an ad in the doctor's surgeries asking if anyone has it and would be interested in meeting to exchange experiences? The docs won't be able to tell you specific patients but they could let you put a notice up. Or what about the post offices or supermarkets.

MrsO mentioned the other threads - the other forum from the PMR and GCA Northeast support group is like a virtual support group - we have laughs and crys and shouts and screams when it isn't going as we'd like.

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

use this link to find the links to the other forum and the website which has a wealth of info from doctors and patients alike - all reliable and checked by experts like anything you find on the info pages on this site.

Look forward to hearing from you again

Eileen

Thanks for all your supportive replies. Setting up a group, when I retire might be just what I keep busy! Medium pain today. Managed to get some packing done for Xmas hols in scotland. Packed all my thermals. Gales today here on IOM so stayed in as day off today. Became Grandma at 44 years. Two Great grandchildren now. You know you as are old when your son becomes a Grandad!

I first started with aches in my thighs which gradually got worse. To begin with I just thought I was overdoing it. I do a lot of going up and down stairs at work, sometimes lugging heavy files, I put it down to this, though in the back of my mind thought the muscles should strengthen with this exercise not weaken. I also found my thighs to be tender to touch. Then it got worse and my calves too started to ache. I found it increasingly difficult to 'do' stairs. Like EileenH I had to come down like a toddler learning to negotiate stairs. Then the problem appeared in my right arm and neck.

Towards the end of January this year, I went to the doctor who immediately said he thought it was PMR and sent me for blood tests. Although they came back clear, he was convinced of his diagnosis and put me on Preds. 20mg, saying that if he was right this would take away my pain, if he was wrong it wouldn't. Well he must have been right because within a day I could get down the stairs properly.

However his management of the Preds was incorrect. He had me dropping 5mg every 3 days and soon I was aching again.

I had to visit the surgery last week for a Chest Infection and saw a different GP who had taken the trouble to read my notes and after dealing with the chest infection, then went on to discuss the PMR and how I was getting on. Fortunately she seems to be 'clued up' on PMR and said that the reduction was too fast and that is why I was starting to ache and she suggested that it would not have been long before I was back to square one. She upped my dose to 15mg per day and insisted I rest to allow the steroids to do their work. She signed me off work for 3 weeks. I have never had a sick note in my life, but realised I have to take this seriously. I stay on 15mg until I see her in two weeks (Feb 26th) when she will discuss my progress and decide whether to reduce or remain on the 15mg dose.

I find this site invaluable and thank everyone for their participation and advice.

Best wishes

ElaineA

I think I should have added my age as I think this is also helpful. I am 60.

Not sure if this will help anyone but I started taking 5 mg of prednisone at night before I go to bed. I wake up a totally different person.

Hi I'm Blubberbabe2 I was wondering if anyone can give me a few clues ! I was diagnosed with GCA in January this wear and put on prednisone have a lot of aches and pains a few panic attacks and a lot of the symptoms other uses describe I am now down to 60 mg a day a little easier but not a lot still shaky and weak at times weepy and feel very tired this weekend I came out in a rash more like prickly heat had a bath and applied aqueous cream seemed to ease it and was going back to nearly gone felt more settled then during this night woke up very hat (again) and rash is back this time very itchy and red applied more cream I have had a bit of cheesecake on both these occasions made with elmlea cream and soft cheese could this be the problem has anyone else had this any help appreciated going to phone surgery when it opens thanking you Blubberbabe2

I'm afraid that at the start you have to be patient and remember that you have a serious illness. Like any serious illness you need to rest and look after yourself. In time things will improve as the dose of pred goes down but you are looking at months rather than weeks. Try to focus on the positive: that you can still see - that's why you needed such a high dose.

I wouldn't have thought the rash was an allergic things since pred is used for severe allergies but I suppose it could be. What sort of pred is it and were you put on any other medications at the same time? Many people do have hot sweats - and in bed it is all too easy to get overheated. Layers of bedclothes and a cool bedroom does help a bit.

But the best person to ask is the doctor.

Me again!

I was first diagnosed in late 2009 and thought I had said goodbye to PMR forever as I stayed on

Prednisolone for a couple of years weaning myself slowly off the medication in 2012.

A few weeks ago, the pains came back with a vengeance and here I am back on 20mg of steroids. Thank

goodness I remembered this site and I am slowly working my way through the posts and feeling comforted by so many familiar names.

Having managed to lose the weight I put on last time, I am horrified to notice how quickly it is going back on

again. Did I read somewhere that a low carb diet was advised?

Still in shock and coming to terms with a second trip on the roundabout that is PMR.

All the best everyone.

Tilly

Tilly

Sorry to hear you are one of those who are 'second time around'.

There are two patients who post on this forum pmrandgca.forumup.co.uk who have had a second go and they are willing to share their second time around experience.

This does not mean you have to leave this site - but it is helpful to talk to people who have gone through a second time around. One of them has found the second time different from the first, but is through it now.

Good Luck and keep in touch.