Polymyalgia Rheumatica, Giant Cell Arteritis, Takayasu's Arteritis
posted by National Medical Research Foundation | 1/09/2006 01:09:00 PM
Polymyalgia Rheumatica, Giant Cell Arteritis, Takayasu's Arteritis
The National Medical Research Foundation is chartered to activate and fund diversified medical/scientific research to find a cure for Polymyalgia Rheumatica (PMR), Giant Cell Arteritis (GCA), and Takayasu's Arteritis (TA).www.nmrfoundation.org
Not-For-Profit founded by Joan and Edward Reiter, Chandler, AZ
17 Comments:
I have GC, and would like to hear from anyone who has this also. I'am 62 and have been on prednisone and methotrexate shot's for 3 year's Linda
I have PMR & GC. I'm 67 and have been on prednisone for 3 1/2 years of the last 4. Evelyn
I was diagnosed with PMR and GCA in April and have been on prednisone since then. Since this is a new experiemce for me I would like to exchange emails with others being treated for this. I can be contacted at caromerl@aol.com.
Carol Johnson
I was diagnosed with PMR the beginning of June and have been on prednisone. I do not have GCA but have been frightened to think I may get it. For those who have it, I was wondering if it appears at the same time as PMR or later?
This has been such a painful experience and has caused anemia and numbness and tingling in my fingers. I wanted to compare notes with anyone else out there who suffers from this. Please email me. Thank you
I was told 18 months ago I had Lyme Disease. Took 17 months of antibiotics. No change. Very elevated Sed Rate and VERY elevated C-Reative Protein. Fortunately, for me, I had these tests done every year just as part of my blood work and so new that this was something I never had before. After suffering for 18 months found a Rheumo doctor who told me i never had lyme. Gave me 20 mg of prednison and within 2 days I had my life back. Able to walk again, no joint pain. Sometimes just don't know who to believe but I gotta believe now because this is the only treatment that worked. And fingers crossed because according to info, this infliction will reverse over time. Would love to get a support group together. Live on Long Island, New York.
I am 49 and at the age of 48 I had to have open heartand then 11 months after was diagnosed with GCA.I have been on prednisone for about 10 months and methotrexate .I have put on lots of weight in my face ,stomach legas and arms .I am just trying to get of prednisone now and my dr saids it will take about 8 weeks .So I am hoping to loss the weight and hope the pain in my arms doesn't come .So please if any one can help me and tell me how it is for them .I hope one it will all go away as i have not work in 21 months.Hope to hear from some one soon.
Hi I am the 49 year old who had the open heart and 11 months later got GCA.I forhgot to put my email adress so i can hear from some one who has it also .My email adress is nowlandailsa@hotmail.com hope to hear from some one soon. I live in Townsville
My Mom went to bed eight years ago and woke up blind, The Dr has misread her blood work, SED rate was sky high and she lost all sight in both eyes. She had been in the office that day telling them that she was having trouble seeing out of one eye, they told her to come back in 9 days. Amazingly, when we were able to get to her Dr's office, after taking her to a neurological center in Phoenix, the records had "disappeared" from her Dr's office! So much for ethics in medicine! He managed to save himself a lawsuit and caused us many years of heartache. I so hope karma kicks him in the @#!
She has lived with me since. She has a very hard time getting around and we have had to relearn so many things. This is one disease that is so horrible to the people that have it and it seems as if little research $$ are being spent on finding anything to help. Stem cell research is not progressing fast enough in this country! Eight years of prednisone therapy is enough to do anyone in!
I am 61 and have had GC for 4 yrs. and PMR for 1+yrs. I am still on Prednisone and recently met with Dr. at Boston Medical Sch of Meds. Vasculitis Dept. and started on Methotrexate. I have a great deal of pain especially in the mornings also problems with my vision, dizzziness and tingling/crawling in my head, hands and fingers and face most of the time. This horrible disease has taken my life away. I worked for 3 years and had to stop a year ago. Now my DBL insurance company says that I can work - but that's another matter. There is so little that is known about this disease and that is very frustration because the Drs. are only guessing on what to expect. Two Rhus. decreased my Prednisone too rapidly and threw me into a terrrible relapse in 2006 and I have not recovered since. I get better results from my PCP! I wake each day with the hope of remission or "burn itself out."
Would love to hear from others.
Blessings to everyone!
My husband was diagnosed with polymyalgia rheumatica 6 months ago. His doctor has said that he has a very bad case...I would love to hear from any men who are also afflicted with polymyalgia rheumatica.
Is there anyone who has recovered from this? How long did it take? Does anyone have any "tips" or any information that may help him cope and/or be more comfortable? He is on prednisone and methotrexate but is still in pain.
We'd love to hear from anyone!
Many thanks,
d.riley
I have had Giant Cell Artertis for about three months. Thank goodness my internist noted the high sed rate along with the headaches I was having. He started me on prednisone right away and my headaches went away. My sed rate fell from 96 to 19 in about a month and a half. He is now trying to reduce the prednisone. The prednisone is a wonder drug for this disease if you can manage to slowly get off it, but from the research I have looked at, you have to be careful to recognize a flare up as soon as possible. Prednisone has reeked havoc with my body - swelling, fatigue, and a generalized sense of unwell. I am thankful that I have my sight, and I am hopeful that this disease can be managed. I think for all giant cell sufferers, the more you know about your disease, the better you can look for the signs that the disease is not being managed...sed rate, C Reactive Protein tests, eye exams, aortic screening are all important tools. And, the biggest plus is knowing your own body and using your own intuitive sense that something is not right. I am 65 years old, and I have endured the loss of our daughter 14 years ago. God has been with me though that valley, and I know He is with me now.
My mother developed PMR about 12 years ago....I had never heard of it and she was in so much pain. I researched everything I could find about it; sent for books, articles, etc. Well, 9 months ago, I walked into my doctor's office and told her I thought I had it. I was in so much pain and where the pain was, resembled what my mother had said. However, the blood work did not show anything elevated and since I had recently been in a car accident, it was written off as strained muscles from that. Ten days later, I had my husband take me to emergency where they did blood work on me and everything that could be high was....including the liver enzyme! They put me on 60mg of prednisone and in 4 hours, the pain was almost gone and I was a new person....or so I thought. I now realize how powerful a drug prednisone is....and yet how much of a miracle drug it is as well. I take medication to prevent osteoporosis, my hair if falling out and....like the lady talking about the pain behind her knees....I have had that since the beginning. I am athletic and thought at first it was related to my tennis but now I know it's part of both PMR and prednisone. The knee swells...in fact, my whole leg swelled...but the pain was behind the knee although closer to the upper part of the calf muscle. Playing tennis one day, it completely collapsed and I ended up spraining my ankle. I wear neoprene knee braces now and it really helps. I have also lowered my dosage of prednisone and that most likely has helped as well. I recently, through the holidays, had a flareup of my PMR and did increase my prednisone. Hopefully, I can start back down soon but don't want to do it too quickly and experience another flareup. I do have pain a lot but....I still play tennis, kayak, and bike....just not as well or as far or as hard. I'm 68 years old and want to enjoy every day to its fullest without letting this disease steal those times from me. I am very aware of GC and, so far, have not had any headaches but I know that all of this can come on in a moment's time....and...go away some day as well. Please feel free to email me at: Laurieskayak@yahoo.com.
To the Lady whose husband has come down with PMR: We have put together in our community a small support group and two of our members are men. Each has had a rather different response to this disease and I think you would benefit from hearing from them. We meet this Friday and I will ask them if they wouldn't mind corresponding with you. I would need to have your email address so please send it to me at: Lauriekayak@yahoo.com.
At our last meeting, we were introduced to these men and we found it quite interesting to talk to them as well. Men do have a somewhat different experience....at least based on what the rest of us women had had. Contact me and we'll go from there...
Laurie
I have had PMR since Nov. 08 started with 20mg. went down gradually to 9mg. today I am back up to 15mg. Had a flare up, with alot of pain. Why? does anyone know why there is flare ups? Not happy with this disease. Is there a support group in NJ?
Joy
I was diagnosed with PMR in August. Started with 20mg of prednisone - went down gradually and had horrible pains. Am now up to 25mg and still not having good days. Does anyone else have this type of experience? My doctor seems to be impatient with me because I don't react to the "standard" treatment
Any comments would be helpful and if you have a good doctor in NY?
Hi,
I have PMR or so my Dr. told me for 9 mos. I went to another Rhuematologist he said he doesn't think it is PMR. Now they think I have a form of RA non specif. I went to Dr. Hal Mitnick at NYU. Have you been checked for GCA ?
i HAVE G.C.A just diagnosed 19th march I started with 60mg then 50mg now 35mg I odd times have headaches come back and flare ups
I have from time to time tingling in my face, now I go back to dr friday to see about lowering to 30mg of prednisolone.
I would like to know if anyone knows of any support groups in glasgow
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