Thank you for being here | Arthritis Information
Hi, I am new here, and I just wanted to say how grateful I am for finding this forum! I have been devouring information ever since I found it. I have read and cried, realizing that there are others “out there” who have experienced the same things I am experiencing.
My symptoms began in the summer of 2007, but I was not diagnosed until Jan. 08 when I had a sed rate test done. At that time they put me on prednisone for a couple months. Unfortunately, the rheumatologist didn’t think it was PMR, so they took me off the pred, and I have been in a great deal of pain for a year and a half now.
At my Dr’s request I went back to the rheumatologist. He told me I was suffering from chronic pain and old age. I am 58. I said “NNOOO!! That can’t be right!”
I have a question: If I have had PMR for about two years (with little or no prednisone), does that mean that I have only half the time to go, or do I now have 2-4 years to go WITH the pred?
Hi Nancy
I wish there was a simple answer to your question but everyone is different and all you can do is gleen what you can from their stories.
I suffered for two years undiagosed and finally found a Dr. who believed I was in pain. I spent one year on pred and was still on 7.5 mg when the pmr left. It felt so good to not have that pain but 3 weeks later something else started up and I was then diagnosed with fribromyalgia. My Dr. said that it was better to have fibro that pmr but then she has not had either one. It is hell too. I am now having symptoms of RA but with no firm dx to go with it.
The thing is you have a place to go when you have any questions and Mrs UK has posted another support url that is in the UK. Try to learn as much as you can.
Take good care.
Pat
Nancy:
Welcome to our little family. I'ts hard to find a dr. who wil believe you. The first one I saw told me I was depressed and needed to exercise. Long story. becuase of the late DX, I was left partially blind due to "GCA. I don't think they really know the duration of this disease. some posting you will read, they will say it went away anywhere from 1 4 years. others are still suffering with this after 5 7 years. I personally believe you can have calmer periods, and then WHAM a flare up will occur. I don't think it ever leaves ones body, but can settle down and then come back with a vengance. Even on the pred. I have had what they call exacerbations (Flare up) I am having one now, I was down to 11 mg, and started getting terrible jaw and shoulder pain, so back up to 40. God bless you and if you have any questions, we are here for you.
bev
Bev,
Do you have PMR and GCA? Which one came first? I was diagnosed in May with PMR. My mother had GCA. Ever since I went on the Pred., I went OFF of the Lyrica (pain med) and Diclofenac (pain med). Now I'm pretty much free of pain in my muscles and joints (on a GOOD day!), BUT now I have either pain, or a lot of stress in my jaw. THe past few days I have had mild but recurring headaches. I sure hope this isn't GCA. What symptpms did you get first?
Nancy
Nancy
Go to
http://www.pmr-gca-northeast.org.uk/index.php
You will find both GCA and PMR explained in language ordinary mortals can understand.
Let me know what you think please.
mrs UK
Nancy
You've asked an interesting? I need to back up a few years to tell you about the PMR and GCA, and yes, I do have both.People can get one without getting the other, but in most cases, if PMR isn't treated soon at onset, it can lead to GCA. Mine started out with my hips aching so badly in the mornings that one day I couldn't get out of bed without rolling out onto the floor and then pull myself up. I DID go to the dr several times concering my aching hips and
had spread to my hands, shoulders and jaws. She kept telling me that I was depressed and needed to exercise. one thing you have to do with this disease, and I learned this the hard way, is to be your own adovacte. No one knows your body like you do. Anyway, I told her NO, I wasn't depressed and if I could walk, I would exercise. We went round and round for months. Then on a Thursday I saw her again, still aching, but now in my left temple. She thought it could be some sort of neuro. and then said I guess I cant get you to exercise, and you are depressed. again I told her NO. and I walked out. the next Sat night, I had the worse pain that I have ever felt in my left jaw, and it ran up beside my hairline to my temple. It lasted for several hours. My hubby wanted me to go to the Er,but I had been given a dx. of depression and the need to exercise, I had no use to go to the ER and have her tell me the same thing. Sunday morning, I woke up partially blind in my left eye. It looked like a triangle and took up the left central and lower left peripherial of my eye.
On Monday, I went to the eye dr, and things really started to move then, in that week I saw my optomotrist, a retinologist, neurologist, and cardiologist. was dx with PMR and heart disease. I went from taking 3 rx a day to 21. Still on the pred.
I've tried to get off this stuff 2 times now, and everytime I do, I have a reoccurance. was told once, that if I didn't go back up to 60mg. that the chance of me going totally blind was almost 100%. On time I was trying to come down and had the dt's. NOT fun at all.
I hope this has helped you some. If you are having Jaw pain, It could be GCA or possibly heart problems. DO NOT MESS AROUND WITH THIS NANCY
neither one of them are anything to put off. Get it checked ASAP, and if your GP can't get you in tomorrow, Go to an urgent care or the Er. but please don't fool around and let it get out of control like my dr did me. PERSIST until you get some action. being partially blind isn't fun.
take care
Bev
Bev, what an awful experience you've had. I feel so fortunate that my internist, who I've seen for well over 20 years, told me she couldn't "wrap her head" around the idea that I had frozen shoulders, which was thought to be the case when I went to see a neurologist. She said I was too active for that and proceeded to ask me a zillion questions, at the end of which she told me was positive I had PMR, and that one of the things with PMR that "blew her away" was the intensity of the pain. So, despite the fact that I have this miserable stuff I've been treated very well by my medical provider. Whew! I sincerely hope things turn around for you.
MRS, what an informative website you have. I have read it all, I think. I was particularly interested in all your stories. I'll bet I know even more than my Dr. now! Thank you!
Bev, I can't believe what a hard time you've had. I can't imagine what it would be like not to see well! YOur statement "but in most cases, if PMR isn't treated soon at onset, it can lead to GCA." I have not heard before...can that be true?
Anyway, I have a Dr. appt on Friday and will fill him in. Will also ask for another Rheumy...
Does anyone have trouble sleeping? If I don't take a sleeping pill (Lunesta) I just don't get to sleep!
God bless you guys!
definately had LOADS of trouble sleeping at the begining with high doses of pred...but that does subside...i too had to take pills..but didnt want to do that for too long...
God bless you too...there is a GREAT group out here that will be pulling for you!
cathiNancy - In answer to your query regarding the possibility of untreated PMR leading to GCA, I thought it might be useful to post my experience. I was bedridden unable to move a muscle in my body during 2006 (both my ESR and CRP results were through the roof, with the CRP being 150+) and the rheumatologist at the time was unable to diagnose me. At the end of 9 months the blood tests returned to normal and the rheumatologist said that I had obviously being suffering from some inflammatory rheumatic/arthritic condition.....obviously! Within weeks, my BP medication was changed and I immediately developed incredible head pain, jaw pain, sickness and massive weight loss. GCA was diagnosed by the 4th GP over 4 weeks, 40mgs Prednisolone prescribed, with urgent referral to a rheumatologist (a different one, I hasten to add!). The rheumatologist felt that the change in BP medication could have triggered GCA (PMR lying dormant in my body). I have since discovered that 7 out of 10 people with untreated PMR go on to develop GCA as opposed to only 3 out of 10 people with treated PMR. So, steroids....nasty but necessary!
The first 8 months I had PMR I could get to sleep with Ambien but I couldn't stay stay for more than 3 or 4 hours, so I didn't get much sleep at all. It was sort of like when I had my first baby—I couldn't believe than anyone could function at all on so little sleep. The body is an amazing machine.
Celtic
I am guessing you are based in Scotland.
If so, you have a support group, on of the first, located in Tayside.
Website www.pmr-gca.org.uk
Take a look.
Mrs UK - How about Welsh?!!!! Don't worry about the website - I'm already in touch with you all, and I'm sure I speak for everyone else visiting this forum and that in the UK when I say we do all so appreciate your kind advice and reassurances, not to mention your vast amassed knowledge re PMR/GCA - those professionals had better watch out !!!Hi folks,
Well I went to see my Dr., and wouldn't you know it...the jaw pain and headaches stopped the day before. So, since I was already on Pred he said to keep going the way we are for another month and to call if I need to see him sooner. The headaches are still not back, and my jaw only aches a little now. I told him how I was learning so much on this forum, that I probably knew more than he did (which I think was not the right thing to say..he just smiled). He'll not send me to another Rheumy, looks like he'll handle things now. I've been going to my Dr. for 20 years now, and just love him! Unfortunately, I know alot of you can't say that.
Anyway, still looking for a way to get to sleep, since the Lunesta stopped working. I think I'll go read a book.
Nancy, although nothing worked well for sleeping the first 8 months or so with PMR, I now find that Ambien works quite well if I just can't sleep. Of course the PMR is much more manageable now so I think that's what's made the difference. Good luck, it's no fun roaming around in the middle of the night.
Nancy
If you are into herbal medicine - but from a reputable supplier.
Valerien, hops and Lemon Balm mixture can help.
and Passiflora Complex is worth a try.
A Lavender or Camomile pillow
and a cup of camomile tea last thing at night.
I have a question. I had double/blurred vision off and on for a year. My opthamologist tested for everything he could think of and found no reason. I was referred to a rheumatologist to check for GCA, and she said that she did not think it was that, since my jaw did not hurt and I have not had terrible heachaces. I had sometimes a VERY sore area on my head for no reason and have had an odd headache occassionally. Then 6 months later I was diagnosed with the Polymyalgia and still have to get that under control. (short term Prednisone helped, but it was only a 3 week course, and now all the Polymyalgia symptoms have come back, as well as what I THINK is GCA symptoms (blurry vision and sore areas on my head some days) . I am REALLY concerned that there is GCA and the treatment is not being done and I am afraid of losing my vision. My grandfather was blind from detached retinas (I have already had one torn retina), and I don't want to even take a small chance of going blind from GCA.
Did you have all the "regular" symptoms of GCA?
Enough already
Just a swift reply - got to www.pmr-gca-northeast.org.uk
follow the links to Resources and on the left hand side you will find information from the BSR in relation to GCA.
You do not have to have all the symptoms to have GCA.
I also am astonished that you only had a three week course of Prednisolone - that's a first for me and I am sure for others as well.
Don't be fobbed of and if you want diagnostic procedures which are currently used in UK email us from the website.
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