Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 Dear Caroline, I would be interested in hearing about the effectiveness of Mirapex, and whether or not your rheumy feels it's worth it. I checked out a website called Health Square Prescription Drug Reference (http://www.healthsquare.com/newrx/MIR1271.HTM) and saw that the side effects were, indeed, horrendous!! As for you reference to " the system " , it is true: it pretty much sucks (for a lack of an " appropriate " term here). I originally applied for disability in January of 2001, and was denied with the explanation of " While you may experience some pain and stiffness, there is no indication that this would interfere with your ability to perform your job requirements....... " HAAAAA!!!!! I had to get a lawyer and FINALLY had my hearing this past Friday. I was awarded on the spot! Surprising, since it usually takes 1-3 months to get an answer! The system really is a joke.....you'd think they were paying you out of their own pockets, rather than the money you've been paying to Social Security your entire working-career! Take care, Chris greywolf70@... Wonder Drug Now that that's been said, we have a prominent doctor in our medical metropolis who has been prescribing Mirapex for patients with Fibromyalgia. He is haveing enormous success and other rheeumatology clinics and MD's have begun following suit. He is supposed to have written an article about it in one of the medical journals. I have been too sick to do research other than to find that Mirapex is a drug commonly used for Parkinson's disease and has some hugely nasty possible side effects. Has anyone heard anything on the grapevine about this drug and fibro? I am seeing my Rheumatologist tomorrow and will ask him. I heard from Marty a day or two ago. He still has not heard from the judge on the SSDI / SSI decision even though all the doctors agree on his disability. He needs to get a decision soon. The RA tumors affecting his lungs are getting larger. I think he said he has 38 of them now. He just had another mini stroke. That makes 4 this past year. He is doing well, all things considered. Send a few prayers up for Marty. It has been 2 years he has been kicked around by the system there to help him. Hope everyone has had a great weekend. Smiles, Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Hi Chris Congratulations on getting your SSI finally. The system does suck as I to am waiting for my court date (13 months total so far). My attorney feels we will win with no problems, he said all the denials and appeals are just part of the process, again congratulations. rjones202@... Wonder Drug Now that that's been said, we have a prominent doctor in our medical metropolis who has been prescribing Mirapex for patients with Fibromyalgia. He is haveing enormous success and other rheeumatology clinics and MD's have begun following suit. He is supposed to have written an article about it in one of the medical journals. I have been too sick to do research other than to find that Mirapex is a drug commonly used for Parkinson's disease and has some hugely nasty possible side effects. Has anyone heard anything on the grapevine about this drug and fibro? I am seeing my Rheumatologist tomorrow and will ask him. I heard from Marty a day or two ago. He still has not heard from the judge on the SSDI / SSI decision even though all the doctors agree on his disability. He needs to get a decision soon. The RA tumors affecting his lungs are getting larger. I think he said he has 38 of them now. He just had another mini stroke. That makes 4 this past year. He is doing well, all things considered. Send a few prayers up for Marty. It has been 2 years he has been kicked around by the system there to help him. Hope everyone has had a great weekend. Smiles, Caroline --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Hi all, Well, I saw my rheumy today. He put me back on a single dose of MTX per week but kept me at 15 mg. Last time we tried that I " crashed " on Thursdays and stayed that way until " shot day " came again, which was Mondays. That is why we split the dose in the first place but who knows? Maybe it will work this time. I am also taking all of my Prednisone (10 mg) in the am to continue the better sleep and feeling better in the early part of the day. I tried that a few days ago and I am miserable after 4 pm but better from 8 am till then. I also (on my own) tried taking all the Bextra (20 mg)in the am instead of split dose. Again, better during the day but hating myself by 4 pm for not saving medicine for evening and trying to sleep through pain. Doc put me on 20 mg in the am and 10 mg in the pm to see if that helps. Guess I'll just have to keep you posted. Temp is 101 right now, but I was 97 earlier today. Seems like the temp swings are getting bigger gaps between numbers. Not sure if that is a good or bad thing. On the Mirapex, I think it would be a safe bet to say my doctor is against the idea. He said for me it is contraindicated and would most likly make me very ill. I told him that after I read the side effects, I didn't want to take it. That opened him up and he said he " covers " for Dr. Drylan and the majority of his after hour calls from Dr Drylan's patients are from those on Mirapex and having problems. He said it is a very toxic drug and should only be used as a last resort drug, when there are no other options. So, there we have it. I am sure there are other doctors who are less conservative, but my doctor cares deeply for his patients individual needs. He listens, and tries very hard to make you better. Some doctors just want to make a name for themselves and use their patients as guinea pigs to further that goal. My doctor has made a name for himself. He has been there, and done that. Now he just wants to help people feel better. He moved here from San Diego to get away from big city life, high crisis environment and took a huge cut in pay to acheive sanity time. I believe him when he tells me not to do something. He is a very brilliant man. Of course, you should decide for yourself and check with your own doctors for thier advice if interested, but for me it is a " don't go there " option. I'm gonna go look for my energy now. I seem to have misplaced it somewhere. Maybe I threw it in the wash, or out with the garbage... Who knows? Love you guys. Sure hope I feel better soon. Smiles, Caroline " a prominent doctor in our medical metropolis who has been prescribing Mirapex for patients with Fibromyalgia. He is haveing enormous success and other rheeumatology clinics and MD's have begun following suit. He is supposed to have written an article about it in one of the medical journals. I have been too sick to do research other than to find that Mirapex is a drug commonly used for Parkinson's disease and has some hugely nasty possible side effects. Has anyone heard anything on the grapevine about this drug and fibro? I am seeing my Rheumatologist tomorrow and will ask him. " We may not be able to change the direction of the wind, but we can adjust our sails. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 8/19/02 8:56:37 AM Eastern Daylight Time, R202@... writes: > , > > I would be interested in hearing about the effectiveness of Mirapex, and > whether or not your rheumy feels it's worth it. I checked out a website > called Health Square Prescription Drug Reference I'm really bad.... I just sometimes do whatever the doctor tells me to do without researching it myself. Sometimes <usually> the research is just too confusing and contradictory. Yet other times, I don't want to follow the MD advice (like increasing prednisone) but eventually follow that too. Now to follow the advise about losing weight. Grrrrrrr. That all being said, I was put on Mirapex about 2 months ago by a neurologist. I've been having numbness in both feet for 6 months, and have restless leg syndrome to the point of crying in pain - generally in the evening. The pain is especially bad in my hips. Usually extra Ultrams eased the pain but taking them made me too groggy to function. Anyway, within a week the pain stopped. I haven't had any noticable side effects (although I did have a menstral cycle 2 weeks after starting the drug and I have been through menopause a couple of years ago). Al (hubby) has fibro and asked the rheumy if she would prescribe Mirapex for him as he saw my relief and she told him only neurologists can prescribe it. But it seems to be helping me a lot. Well, it's after 2 AM and I need to get up for work tomorrow. Hate insomnia. Welcome to the newcomers. Life does improve, then it doesn't, then it does again. Go figure. Love Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 I had a similar experience until I started Arava (20mg a day) and my fever went and stayed away and I feel so much better. it is a wonder druf for me--- w/ pred and MTX Re: Wonder Drug > > Hi all, > > Well, I saw my rheumy today. He put me back on a single dose of MTX per week but kept me at 15 mg. Last time we tried that I " crashed " on Thursdays and stayed that way until " shot day " came again, which was Mondays. That is why we split the dose in the first place but who knows? Maybe it will work this time. I am also taking all of my Prednisone (10 mg) in the am to continue the better sleep and feeling better in the early part of the day. I tried that a few days ago and I am miserable after 4 pm but better from 8 am till then. I also (on my own) tried taking all the Bextra (20 mg)in the am instead of split dose. Again, better during the day but hating myself by 4 pm for not saving medicine for evening and trying to sleep through pain. Doc put me on 20 mg in the am and 10 mg in the pm to see if that helps. Guess I'll just have to keep you posted. Temp is 101 right now, but I was 97 earlier today. Seems like the temp swings are getting bigger gaps between numbers. Not sure if that is a good or bad thing. > > On the Mirapex, I think it would be a safe bet to say my doctor is against the idea. He said for me it is contraindicated and would most likly make me very ill. I told him that after I read the side effects, I didn't want to take it. That opened him up and he said he " covers " for Dr. Drylan and the majority of his after hour calls from Dr Drylan's patients are from those on Mirapex and having problems. He said it is a very toxic drug and should only be used as a last resort drug, when there are no other options. So, there we have it. I am sure there are other doctors who are less conservative, but my doctor cares deeply for his patients individual needs. He listens, and tries very hard to make you better. Some doctors just want to make a name for themselves and use their patients as guinea pigs to further that goal. My doctor has made a name for himself. He has been there, and done that. Now he just wants to help people feel better. He moved here from San Diego to get away from big city life, high crisis environment and took a huge cut in pay to acheive sanity time. I believe him when he tells me not to do something. He is a very brilliant man. Of course, you should decide for yourself and check with your own doctors for thier advice if interested, but for me it is a " don't go there " option. > > I'm gonna go look for my energy now. I seem to have misplaced it somewhere. Maybe I threw it in the wash, or out with the garbage... Who knows? Love you guys. Sure hope I feel better soon. Smiles, Caroline > > > > > " a prominent doctor in our medical metropolis who has been prescribing Mirapex for patients with Fibromyalgia. He is haveing enormous success and other rheeumatology clinics and MD's have begun following suit. He is supposed to have written an article about it in one of the medical journals. I have been too sick to do research other than to find that Mirapex is a drug commonly used for Parkinson's disease and has some hugely nasty possible side effects. Has anyone heard anything on the grapevine about this drug and fibro? I am seeing my Rheumatologist tomorrow and will ask him. " > > > > > > > > > > > > We may not be able to change the direction of the wind, but we can adjust our sails. > > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 --- In , " tennispla22 " <tennispla22@y...> wrote: > Hi, > > I am glad to see this newsgroup. I have suffered with allergies for > quiet some. I have been on Prednisone, Allera, Zyflo and many more > medicine. Believe it or not My IgE is about 7000 yes 7000. > > I started taking Xolair in Dec,2003. My Doctor told me that Xolair > might not help like it has others dut to my high level of IGE. After > my first shot I started feeling better in 2days. Xolair has been a > miracle drug for me; As of today I have been back to the Doctor > complaing about not feeling good or my sinus are bothering me. I > only go to him every two weeks to get the shot. > > Personally this drug has helped me a lot and brought a new meaning > to life outdoors. > > Al Al, Thanks for joining and sharing your story. You have found the right place for support Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Im assuming the wonder drug is Herceptin. My sis forwarded me the article, not realizing I had taken it for 3 months until I started having cardiopulmonary symptoms. It does have a high rate of heart and lung damage. I know I found a web site of women using it and they absoloutly swear by it as far as shrinking tumors. I am skeptical about the statistics as far as actual outcome as opposed to tumor response. I think with my long time history of smoking, I was more concerned about the cardiac, pulmonary damage. I know one doc in particular was just incredibly condescending that it would even be a concern. Still first time heart attacks in young woman are usually fatal. Does Herceptin still count as a success if one dies from a cardiac origin. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 I am so sick of these so called " wonder drugs " that can have worse side effects than the problem you already have! There are natural ways of shrinking tumors, why take a drug that is going to damage your heart? C Quote Link to comment Share on other sites More sharing options...
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