Piece in Daily Mail

Hi Madge

Fame at last!!! I hope Professor Dasgupta in what must be one of his many roles as PMR/GCA researcher will have many more opportunitites to bring this hitherto mostly unheard of illness to the fore.

As for his referral of a virus being a possible cause which could be treated with a short blast of steroids, I have seen the experience of one man who suddenly developed the familiar painful symptoms in all the classic muscle areas being prescribed a course of antibiotics and steroids and he made a complete and fast recovery. Unfortunately, we are not going to come across such people on this forum as obviously he would not have been diagnosed with PMR as such. His GP certainly acted with great foresight if indeed it was PMR. Food for thought :idea:

Hope you're having a good day together with everyone else looking in.

MrsO

Before I was diagnosed with PMR I had a realy bad cough with temperature. Could not see my doctor and went to out of hours who would not give me any antibiotics and sent me home. On the monday so bad went back to my own doctors who said I had a really bad chest infections and put me straight on antibiotics, this infection went on for nearly three weeks. Took me ages to get any where near better. Within 6 weeks PMR. THat was 2.5 years ago. Things may have been different if i had been prescribed antibiotics sooner.

Keep smiling.

Linda

Hello all

Daily Mail seems to be the only paper that gives us a mention

Had a great holiday but very tired last week I want to know how 2 suitcases of clothes make about 5 loads of washing and eternal ironing !!!

Felt really well on holiday swam about 4 times a day and only strolls really as it was very hot but the travelling I do find tiring I think it is always stressful even useing a small local airport We still managed to sit on the aircraft for an hour going nowhere !!

I should have started to reduce from 7.5 last week but I decided ( for once ) not to be impatient and be sensible and left it till yesterday so I am trying 7 and will have an easy week and see how we go Have discovered the hard way that you cant hurry this if it doesent want to be !!

Best wishes to all

Mrs G

Yes - interesting. We have a colleague in Budapest whose wife had something very akin to very severe PMR and who was put on a very high steroid dose to be able to function at all. He is a doctor and after she developed Cushingoid syndrome from the steroids he did a load of research and then gave her very very high doses of some antibiotic over quite a long period which did the trick. He told me about it last year when I was still a bit CRAFT-affected but I'll be seeing him the week after next so I'll ask them again about it. I was intrigued to by the bit about depression towards the end of the article - now how many of THOSE patients are also closely related to PMR. I could have fitted both descriptions. I'm absolutely positive that all these things are related sideways - somewhere between siblings and cousins.

Time will tell - but I wish they'd get it sooner than later as I'm in the middle of a flare! And it's rather cosy here to make it even worse!

Night all,

EileenH

Hello Linda, Eileen (may you quickly reach the end of that flare!) and Mrs G (welcome back and good luck with the reduction....and the ironing!)

My elderly aunt (a retired nurse) developed a very severe chest infection a couple of years ago and was prescribed antibiotics and a course of steroids, 8 a day the first week, 7 the second and so on. She mentioned to the Pharmacist her concern about taking steroids and he said it was now quite common to prescribe them alongside antibiotics to 'nip things in the bud'. She recovered well with no steroid side effects. After reading the posts on this forum over the years of many people who have developed PMR following a virus-type illness, could my aunt's infection potentially have developed into PMR but for the steroids/antiobiotics? My PMR started with night sweats/low grade fever - hmm!

MrsO

Hi all again!

The main reason I like going to our caravan here is that at the end of a week I can often come home with untouched clothes except for the swimsuit and wrap and the trousers and shirt I wore to go out to eat in the evening - same for a week, only worn and hour or so each night! Just about to go to a medical conference - now there's a different kettle of fish!

Now this is going to sound nuts given the current perceived wisdom but - I am sure that my PMR originally started more than 30 years ago after a severe episode of something like a flu. The effects lasted for about 6 months, I was off work for ages, and then improved gradually over about 4 or 5 years. At the time my liver values were raised but by the time I saw a specialist they were back to normal (6 month waits in those days) and I was improving. However, in retrospect it ticks all the boxes for ME(since the diagnosis was very much yuppy flu in those days that wasn't considered). I just accepted that the back pain and tiredness were just hang-ons from that and just plain \"back problems\" - I used to have a mild scoliosis and have a very flat lumbar area. I used to get joint pain and was quite stiff in the mornings and my GP in Germany, who was also a good friend, regularly did various blood tests including looking for rheumatoid factor as he was suspicious about what was going on - never anything. Thyroid etc apparently fine. I can remember getting out of bed in the morning in Scotland after we came back and could hardly walk for well over half an hour. I can't remember anything about 6 years ago just before it got worse this \"session\" so to speak but the really bad time last year was just after having a TGA (transient global amnesia) which was rather stressful (not the thing itself, I don't remember, but the 24 hours after were!).

Since I've been on the steroids many of the things I had accepted and lived with for most of that 30 years have improved immeasureably - and I don't think it is coincidence! Our colleague last year was adamant that steroids weren't the final answer but short of moving to Hungary (no - what a disgusting language) I'm not going to be able to try anything else. I'm hoping for a longer discussion with him next week. There is a group in Budapest who do PMR research I think. Others at the meeting were keen that the endocrine aspect should be looked at more carefully.

all the best to all - will be busy for the next week!

EileenH

I must have read the Daily Mail with my eyes closed yesterday as I didn't notice the article :thepost: And, for the first time ever I gave my copy to my son-in-law last night so he could read up about the World Cup! I digress.......... In May 2009 whilst in Spain a rash came up on both my arms within minutes one evening. I didn't give it much thought as I guessed it was just a heat rash. That night I woke at about midnight and felt so ill. Every single joint and muscle in my body was on fire. By 3am I thought I would have to get my partner to take me to the Hospital - I had never felt so ill. The pain settled in my arms and shoulders and I could barely move my hands the next morning. The following two days were spent, completely flaked out on the settee whilst throwing copious amount of painkillers down my throat. Most of the pain (apart from the right shoulder) subsided and for the rest of the holiday I just felt completely exhausted and weak. I went to the GP when I got home and she said she thought it was a virus (where have I heard that one before!!). Three weeks later my brother died and I thought the lethargy I was then feeling all the time was probably down to stress and sadness. At the end of August on my way back from Spain in the car I just completely siezed up, stiffness and pain blah blah blah (you've all been there so won't go on about it) but I'm more and more of the opinion that my PMR was either triggered or caused by the May event. The more I read on here about other experiences the more I'm convinced that this is the case. Now I just have to ring round to friends and ask for a copy of yesterday's Mail to see if its relevent to my experience.

Lizzie Ellen

PS: Pleased to hear you had a good holiday Mrs. G - I'm off on Monday. Only 1,500 miles in the car!! Apprehensive? You bet!

Hi guys!

If you didn't see the article (because you couldn't or wouldn't :oops: get the Daily Mail) google \"pmr article daily mail\" and the link will come up at the top of the results page!

I hate mince brain, dyslexia and pain - all manifestations of a flare of PMR :evil:

EileenH

Thanks for the info EileenH. Just about to have a look at the article. Really sorry to hear you're having a rough time just now, hope it passes soon. I'll give you a wave on my way down to Spain! Actually, thinking about it, if I see anything in Italian then I'm way off course!! :lol:

Take care,

Lizzie Ellen

[quote:a058558bf8=\"EileenH\"]Hi guys!

If you didn't see the article (because you couldn't or wouldn't :oops: get the Daily Mail) google \"pmr article daily mail\" and the link will come up at the top of the results page!

I hate mince brain, dyslexia and pain - all manifestations of a flare of PMR :evil:

EileenH[/quote:a058558bf8]

Thanks Eileen for the tip on finding that article. It was very worthwhile reading.

I searched for it yesterday... but only searched for 'daily mail'. When I saw what kind of newspaper it was :roll: - I stopped searching.

The main thing I take from Dorothy Byrne's story is this quote:

[quote:a058558bf8][i:a058558bf8]\"It’s vital that the new British Society for Rheumatology guidelines are brought to the attention of all GPs and, if my experience is anything to go by, all new PMR patients should see a rheumatologist to get their treatment right.\"[/i:a058558bf8][/quote:a058558bf8]

Te-he Rick! :lol:

Actually my VERY conservative and prim and proper mother-in-law always read the Daily Mail - she was typical of its predominant readership! I ALWAYS hated it and wouldn't be seen dead carrying it. We did buy it once because there was an excellent offer with it and I made my husband carry it to the check-out!

To be fair it has deteriorated over the past few years.

EileenH

:thepost: Hey EileenH, don't knock it, I can do the crossword even when I have a treacle brain :lol:

Lizzie

Same here Lizzie Ellen !! I do it every day I do think they are good for all health matters also but also agree it is not the paper it used to be

I hope you have a lovely holiday and dont find the journey too tiring I took so many steroids on holiday I could have stayed for 6 months They were checked so often before I travelled !!

I seem on 7mg so far so fingers crossed that when I next go away in September I will need less

Best wishes

Mrs G

Doesn't say much for me either then!!! I take the Mail every day for the crossword, codeword and sudoku......no I'm not that good, I leave the advanced sudoku puzzles for hubbie! Agree with Mrs G, the health pages can be well worth reading.

MrsO

Agreed Mrs O. I do the Suduko and the Codeword along with the Crossword in the hope of jiggling the brain cells everyday just to let them know I've got my eye on them :steam: and thanks for the good wishes Mrs G. I needed a very clear brain to calculate just how many medications and in what quantities I needed for the 6 weeks. Gone are the days when my main concern was matching a bikini with a wrap and sparkly flip flops! I'm between 8mg and 7mg just now and it seems to suit me pretty well, so I'm hoping the journey will be enjoyable. But hey, what's the worse that can happen? I'll be a zombie for a few days (nothing new there then!). Must go, need the Thesaurus to figure out 8 Down!!!!

Lizzie