I have had Poly for 20 m0 nths and am now taking 3 mgs daily and about to decrease again using Eileens very good tapering off method. I have little or no pain at all. However for the past week I have experienced jaw pain on right hand side , saw doc but he says use gel as sometimes it can be inflamation , almost like Neuralgia at times , goes away with Paracetomol. I am worried in case it is GCA, my eyes are fine and I dont have headaches, I feel well and get plenty of excersise, I am 74yrs old and considered to be fit and well, can play outdoor Bowls for 4 hours at a time etc. I would like to hear from anyone with similar symptons please,I only ever put on 7pounds in weight when on 15 mcgs but that has now started to receed I dread having to increase dose again my ESR is 12 and Doc says all ok ,but I am still concerned.
I have had neuralgia for 40 years before diagnosis of poly mialga and still get it . GCA affects the eyes .Since being on pred still get neuralgia pain sometimes spreads from jaw to eye and centre of skull .Pain killers don't really make it better but always starts in jaw or bottom teeth .Cold wind and teeth clenching generally brings it on .Had an episode of floaters in eye before diagnosis so went to A&E was told that the ESR would have been a lot higher if it was GCA .I started with a result of 60 which after 3 weeks droped to 50 so don't worry much just be mindful that eye pain plus vision
Problem may mean a trip to doc for reassurance or treatment .Hope your neauralga soon settles down
Beatrice, the jaw pain that sometimes accompanies GCA occurs only when chewing. So if your pain goes away with Paracetamol and with an ESR of 12, it's unlikely to be GCA. Could you have been caught in some strong winds whilst playing outdoor bowls perhaps thus causing a touch of neuralgia? I have experienced neuralgia pain several times - it is like a sharp stabbing pain. If it continues, perhaps you could get your dentist to check there isn't anything amiss with your teeth.
I can't respond to your GCA concerns, but I would like to thank you for sharing your recovery story with us. What a beacon of hope you are if after 20 months from diagnosis you are comfortably on 3mg Pred a day - and dropping. Well done. And for the rest of us : Onwards and downwards with the Pred!
Wow! 20 months PMR - 3 mgs pred - 74, and 4 hours outdoor bowls!!! Congratulations!
Thankyou Carol will take that on board very painful today, going Docs , watch this space eh , Cheers
Thankyou, will get this pain checked out, its ok at night but bad this morning,
Yes I am lucky with the joint pain and now think this other pain may be neuralgia, we will see am seeing Doc today, its very painful this morn,
Is the jaw pain just when you chew? Does it then go away when you stop? If so then your doctor should perhaps keep an eye on you. If your ESR was raised originally and is so low now it is less likely to be GCA I think - it tends to go up more in GCA.
However - to find out a lot about GCA click on this link
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
and then click on the link in the first line - the NE support site has loads of information about GCA for you to read.
Just one thing - although the ESR usually does go sky high in GCA, for about 1 in 6 patients it doesn't. And, rarely, some patients who have had PMR and GCA in the past don't develop the raised ESR for some time after the inflammation starts up again.
But as MrsO says - if it goes with paracetamol it very likely isn't GCA - but keep an eye on it and any other things that develop. You'll find out all aboutit if you follow the links I gave you.
Fingers crossed it's not GCA.
Thanks Eileen reassuring, my ESR has come down in last two months from 14 to 12 , I visited dentist yday and he thinks may be my teeth overbiting each other , he did some filing down I went out for a meal last night, (but stuck to Salmon) it was a little uncomfortable but so far this morning all is well, hope Im not speaking too soon. Have had problems getting on line today any ideas for easy access.Please.
Hi Carol, my laptop is playing up so bare with me please, I visited Dentist yesterday he checked my teeth and said my overbite at the back needed lessening so he filed down teeth, so far sogood today,went for meal out last evening had some discomfort,my ESR this week is 12, but today seems promising,must not be too confident eh.
still keeping fingers crossed John.
Beatrice, I hope the dental work continues to improve and resolve your pain. That's an excellent ESR by the way!
I've also had problems getting on to the forum - I can only think they must be working on it......again!
The site has been VERY slow the last few days - possibly they are working on it, I know there are some new things they want to do.
I had a wisdom tooth that started to erupt when my second daughter was on her way - it continued to do so for the next 30 years! A few years ago I asked a UK dentist if he would take it out and he reckoned it would cause more trouble than it was worth. In retrospect he didn't want the bother of an NHS job - because last February I had it removed by a local dentist here in Italy and I have to say it was the simplest visit to the dentist I've ever had! I was so scared in advance about what might happen with the PMR and I am also on warfarin. Since then I have had next to no back pain - and I don't think it was coincidence. I'm sure it was making my bite lopsided. The difference is utterly amazing!
Hi Beatrice ,went to Christmas craft at Hatfield house today ,suprising how heavy the shopping gets and shakes the legs .am back to neck shoulder pain again now and assume shaky legs is perhaps the preds .Must learn by this I am into my fith week now ,so back to pain killers feet up and a wishful glass of wine .
Have had sever pain in shoulders for years ,I am 66 and Docter has always been reluctant to put me on statins ,wonder why she never tested for PMR before this
Hi Eileen, all replies are so welcome and reassuring. myself I am convinced that the now occasional Jaw pain is a form of Neuralgia (maybe hey) it is surprising how conversations start, I had a hospital Visit yday and the nurse there was complaining of same symptoms , she was diagnosed with a form of neuralgia that does eventually go away , she also had a back tooth out. My pain does go along the bottom teeth when I get it and I have a large wisdom tooth there. Will just monitor it some more. My hosp visit confirmed I have ruptured a ligament in left shoulder nothing to do with PMR,thankfully I only am getting some hand discomfort from PMR at the moment trying to taper from 3mgs to 2 but very slowly. Visiting a bro in law Friday aged *% just been diagnosed with PMR
H Ha Brother in law 85yrs old, not trying to hide age
Things a little more comfy at moment thankyou, but yes forum is so slow
Still trying to reduce Heather from 3 to 2 but think mit will be a long one , PMR affects my hands if it flares a little. Hopefully neuralgia not as severe