Never a days illness, now this!!

Jim

Is there a reason why you have not contacted PMR- GCA Scotland?

http://www.pmrandgca.org.uk

It is listed on Patients Experience Support Groups and also it has an office in Dundee which I visited the other week. So if you ring you can meet a real live person and talk it all over face to face. Everyone is made welcome.

Hi, Margaret : Just read your note and sorry to hear your husband may possibly be diagnosed with PMR - especially after leading a very healthy life. I was diagnosed in 2007. It struck quite suddenly, starting with a stiff neck that I didnt think too much of, progressing right across my collar bone, into my legs, etc. My doctor on diagnosing me stated 'Its a nasty condition' - was started on Prednison 40 mgs for a short time and after a day or so I felt much like my normal self - relief. However, dosage has to be decreased slowly and once I was down to less than 12.5 mgs, felt some symptoms again. So up to now I am down to 4 mgs/day but feeling symptoms. The fatigue I find is the most difficult.

Pain relief through Paracetamol or my preferred option - Ibuprofen - helps keep functioning as close to normal as possible.

But, as many responses will probably tell you, each person responds differently. Hopefully, your hubbie will get relief from the worst of the painful symptoms and learn to cope. I have only just found this site but there seems to be lots of good info out there. Also, it is said that PMR eventually burns itself out!!!!

Best of luck

Scampsmum

I noticed on this posting (after reading your other posting on eyesight) that you have just found this site.

Welcome to a not so exclusive club.

You may want to pay a visit to www.pmr-gca-northeast.org.uk and read up on the Guidelines issued by the British Society of Rheumatologists issued June 2009 on both PMR and GCA.

I also notice you live in North Yorkshire. There is a support group which operates in Middlesbrough - details can be found on the site.

Prednisolone is given to alleviate the symptoms, as there is no known cause or cure and PMR comes and goes when it wants and does its own thing.

Most Rheumatologists and GPs advise no NSAIDS when taking steroids. Read the other threads on here and also visit the website. Knowledge is power.

Hi Scampsmum!

Welcome from me as well!

Just an amplification of MrsK's post: I also use ibuprofen alongside my steroids but only one or two doses at most at any time. Both steroids and NSAIDs (non-steroidal anti-inflammatories) have a nasty effect on the gut and can lead to ulceration and bleeding on their own so most doctors and pharmacists advise that they should not be used together as that just increases the risk. Some will refuse to give them to you if they know you are taking steroids! I find paracetamol is useless, to be honest!

Whilst lots of us would love to be on your dose of 4mg have you tried going back up slightly with the pred dose? I take my pred every second day and have just had a flare so am currently on 17.5mg/2 days, i.e. just under 9mg/day. At 17mg I have symptoms after 2 or 3 days, at 17.5mg almost nothing so there is a very narrow gap between relief and pain. At that level (below 7.5mg/day) you are at what is called a physiological dose, i.e. the amount the body would produce itself, and the side-effects should be negligible. At 5 or 7.5mg/day you could use enteric coated pills which reduce the effect on the gut a lot (as they are absorbed lower down than the stomach) and at the moment you must be using the ordinary white tablets which are quite irritant to the stomach lining adding to the risk of using ibuprofen.

Looking forward to hearing from you again and all the best,

EileenH

[quote:dfddffac82]ordinary white tablets which are quite irritant to the stomach lining adding to the risk of using ibuprofen.

[/quote:dfddffac82]

I, who have complained loud and long both on here and to my poor GP about how ghastly some of the side effects of Pred are, have never taken other than the bog standard white tabs and, at one time, was on 30mgs. They have never affected me at all but I do take Manuka honey twice a day, about a desert spoon each time. Also Ihave never gained more than a couple of kgs. when on Pred. That's what'ds so infuriating about everything to do with PMT/GCA. Everything is unpredictable. We just thank our lucky stars/guardian angels for the pluses and try to live with the others. Thank goodness for this site where we can all of us find someone who makes us feel not too out of the ordinary. BettyE

Hi Jim & Margaret Ann....good to see you back posting as we've all been wondering how you were faring . Jim, you have been through so much in the last while, and trying to stay with your work aswell !!! Do not ever worry about having a good old moan on here as we know what you are going through and how hard it is to get other people to realize that we really can not cope with a lot of daily activities :cry: .I know that you are concerned that it may be something even worse....I had all those tests and thankfully they came back clear ...so try not to worry...not easy I know .As someone else said, try to write down as much as you can before you see the consultant, not only about how this is affecting you physically but also the impact on your job and your general life....the doctor will then have a clearer picture of how much your life is being disrupted and how badly you need to have some treatment that really works for you.

The very best of luck to you and hope that you get some help this time.

best wishes, Pauline

Hi all

For anyone new looking in and worried about the effect on the stomach of the white, uncoated Prednisolone tablets, a live yoghurt eaten just before taking the steroids will help to line the stomach and offset any problems. Also the calcium it contains will help to protect the bones from steroid-induced osteoporosis.

Like Betty, I also take Manuka honey daily as, apart from all its many health benefits, it is great for building up the immune system which is depleted by the steroids particularly when on the higher doses.

Hope you've all been experiencing the fantastic weather we've been having in this part of the country for the last few days, and have been able to stock up on the Vit D from the sun before winter. 8)

MrsO

[quote:367e0517c6]ordinary white tablets which are quite irritant to the stomach lining adding to the risk of using ibuprofen.

[/quote:367e0517c6]

I, who have complained loud and long both on here and to my poor GP about how ghastly some of the side effects of Pred are, have never taken other than the bog standard white tabs and, at one time, was on 30mgs. They have never affected me at all but I do take Manuka honey twice a day, about a desert spoon each time. Also Ihave never gained more than a couple of kgs. when on Pred. That's what'ds so infuriating about everything to do with PMT/GCA. Everything is unpredictable. We just thank our lucky stars/guardian angels for the pluses and try to live with the others. Thank goodness for this site where we can all of us find someone who makes us feel not too out of the ordinary. BettyE

Hi everone its Margaretann im posting in the early hours as usual, when the house is all quiet, well its comming up to jims appointment thursday 21st and to say hes worried is an understatement he is worried that they come away with some other illness thats worse than polymyalgia rheumatica he refuses to write something down that i say,like the headaches he is having, the pains in his hips ect he says they cant all be connected so he refuses to tell docter about it.I will be with him but there is only so much i can say, im not the patient. i thank you all for answering his posting your kind words and understanding helped him greatlly, so all we can do now is wait but will keep you posted. this is getting like a long drawn out saga ha ha God Bless all of you and thanks again you do make a difference MARGARETANN X

Margaretann - it does not matter whether Jim thinks things are connected - his skill is driving an HGV. I've pointed out before that doctors are not mind readers and when they are taking a medical history they need to know everything. They have the medical degree and the experience and it is then up to them to look at an overall picture. And actually, if Jim has got PMR then headaches ARE a part of the picture as people with PMR are at a greater risk of developing GCA which often shows up as headaches amongst other things. It may not be - but unless he is sensible and tells the doctor everything the poor doc has no chance of working out what IS wrong. Let's face it - if what you have said in your posts is true, there is something going on.

EileenH

Hi Margaretann

We so want to help you and Jim but there isn't a lot to add now to what's been said before.

However, you said that Jim is now suffering from headaches which I don't believe you've mentioned before. If this is a new symptom, then Jim MUST mention this at his appointment tomorrow.

I suffer from both PMR and Temporal Arteritis (also known as Giant Cell Arteritis) which is a linked condition to Polymyalgia and one of my first major symptoms was a headache. It is the more serious of the two illnesses in that if it is not treated immediately with high dose steroids (either 40 or 60mgs daily) there is a very real risk of losing one's eyesight and this is not recoverable.

I don't wish to be alarmist, Margaretann, just, hopefully, helpful and it's quite possible that Jim's headaches are being caused by something completely different, even the stress that he has been going through for all these months over the whole has he or hasn't he got PMR issue. But far better to be sure than sorry, mention it tomorrow and let the consultant decide. Jim has now had previous experience of talking to the consultant and perhaps he will find it easier tomorrow. It was great to see that he has even found it easier to talk to us via his last posting! :lol:

Do let us know how Jim gets on as I'm sure we'll all be thinking about you both tomorrow. My very best wishes.

MrsO [/b]

Hallo to you both

MargaretAnn there is no reason why YOU shouldn't take a few notes along, just enough to remind you of all the symptoms. I've never found my doctor minds. It must be easier if patients come up with all the possible info. As Eilen has said already they are not psychic and only have us to rely on for how we are and have been feeling.

Very best of luck BettyE

Good luck for tomorrow - group hug :hug: we'll all be keeping our fingers crossed that it goes well for Jim.

Kind thoughts from

Lizzie Ellen

Hello Margaret Ann

Yes best wishes for tomorrow Take some notes yourself Im sure most Drs Consultants etc know how nervous we get with them They all know abour \"White coat syndrome \" where our blood pressure always goes up in the surgery

Try and start your notes form when all Jims symptoms started and think of every different symptom and what difference the steroids did make Drs do find information helpful

Best wishes again

Mrs G

Hi MargaretAnn & Jim,

Hope all goes well for you today and that you come away from the consultant with some answers and some really effective treatment .

We are all rooting for you :goodluck:

Best wishes, Pauline