Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 In a message dated 5/12/00 1:58:41 PM Pacific Daylight Time, Hob@... writes: << >> Dan, C here. See......didn't I tell you this group was great. Thanks again for ALL of the info. (with my brain fog, I enjoy it even more after the first time I read it.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Wow this is awesome information. You are just a book of data! I just talked with my rhuemy today and asked him if my lung cancer could be related to my RP and he said no. That there are not to his knowledge any cases of this. There may be some (like myself) who have lung cancer AND RP but they are not connected. Nancie --- Hob@... wrote: > Welcome to the group, Dan. Sorry you have RP, but > it sounds like you are > getting competent care. One other list member has > written that her doc has > suggested that she join an experimental group using > Enbrel. Are you in such > a group or are you taking the Enbrel because your > doc feels it has proven > results for RP? I notice that you are also taking > Metho. Since Enbrel for > RP might still be called experimental, that could be > the " insurance " that you > need. > > Did your doctor discuss your T-cell count with you > before prescribing Enbrel. > I would be very interested to know if it was > elevated since Enbrel is > supposed to suppress tumor necrosis T-cells. I > have not seen anything > published about elevated T-cell counts in RP > patients as yet and would like > to know if yours is elevated -- or was elevated > before starting Enbrel and > Metho. > > Please keep us posted on your progress. > > Kathleen's comments about a positive attitude and > mortality tables that > reflect too many mis-diagnosed or undiagnosed cases > until there was a lot of > damage is right on the button!! Be thankful that > you have been diagnosed > early because that means that you will probably get > remission and have a more > or less normal life and life span. > > Remission means you have no symptoms for an extended > period -- you may even > be able to get off all meds for a while if you are > one of the lucky ones. > Most literature indicates that it may remit for as > long as two years at a > time but almost all patients will eventually relapse > with a flare or series > of flares. Some few may be relatively symptom-free > for many years on a > " maintenance dose " of meds but that seems most > common among the patients who > were diagnosed after age 50 -- i.e., for some reason > the older you are when > you get it the less severe it seems to be with some > exceptions. > > Amost all of the older literature says that anyone > with RP will eventually > have some sort of disability. It may be loss of > hearing or vision, loss of > balance (chronic dizzyness), neuropathy (legs go > numb making it hard to > walk), or heart and lung problems. There are also > certain cancers that seem > to accompany RP in some patients -- mostly in the > sinuses, and throat > (larynx) and esophagus and sometimes in the lungs > and lymph systems. But > with new research and drugs, the numbers of patients > who have RP for a > prolonged period and do not have any significant > disability may be changing > for the better. What Kathleen says is true -- take > all those reports of > eventual " morbidity " with a grain of salt. > > It is considered a fatal disease in that many people > who have it eventually > die from a complication of RP -- but it is not > unusual for people who have it > to live 30 years and more as long as they are > receiving treatment. The > important thing is that a severe case left untreated > can lead to death in two > years or less and those unfortunate cases skew the > statistics for the rest of > us. > > Prednisone at 10 mg a day is about what the body > produces under normal > conditions and many people are able to take that for > years without any side > effects (after starting out with a much higher > dose). As your dose goes down > the side effects also subside. Some listers report > that they have flares if > they take less than 12 to 15 mg of prednisone. > Others do just fine on 10 mg > or less as a maintenance dose. > > Most doctors will try to get you off a more toxic > immuno-suppressant > (methotrexate) or to get the dose reduced as much as > possible at an early > date. Sometimes they replace a med with a > less-toxic one for maintenance and > if you have a flare they decide if you need to go > back on the stronger med or > just up your dose of prednisone. > > Dr. Jane Hoyt Buckner ( TEL: ) is doing > research in RP and > accepts patients who are willing to send blood > samples from time to time. > She has identified various components of > cartilage/connective tissue that can > be affected by RP and account for problems with > ears, nose and trachea. She > is also working on the roll that T-cells play in > causing RP. Her web site > is www.vtnresearch.org. > > You will find a lot of information about RP at > various internet sites under > the keyword VASCULITIS. Those sites are > particularly useful in identifying > specific problems with eyes, hearing, balance, > heart, kidneys and other > organs. The possibility that any of these problems > could eventually develop > varies with each patient (many never get them) but > they point out the need > for baseline echocardiogram, hearing test, eye exam > (prednisone increases eye > pressure - needs watching), bone scan (prednisone > causes loss of calcium - > you may need to take calcium), and lung capacity. > A number of RP list > members also suggest that patients be tested for > mycoplasma (full spectrum, > not just STDs) because some of them have been found > to have an underlying > infection that is treated with minocin, sometimes > with both minocin and > zithromax. Some patients have reported testing > positive for other types of > microorganisms and that taking the right antibiotic > has made a significant > difference in their symptoms. I don't recall what > these other " bugs " and > drugs are. > > RP is not always the only form of vasculitis a given > patient has. Many of us > have another form of auto-immune vasculitis like > lupus, Wegner's > Granulomatosis, polyanggitis, Sjogrens, etc. or > other rheumatoid conditions > like fibromyalgia. There can be an overlap of > symptoms but blood tests will > sometimes determine that there are antibodies that > indicate another > auto-immune condition along with RP. Those > antibodies don't always show up > -- sometimes it takes several tests before they > appear --usually during a > flare. ANCA antibodies are particularly elusive. > > I am not suggesting that you constantly worry about > your aches and pains and > write down every little twitch or tingle, but while > you are learning what is > important and what is not important, do not be > afraid to discuss " every > little thing " that concerns you with your doctor. > Pain that persists in your > chest, nose, eyes or inner ears can be significant. > Hoarseness that persists > or gets worse and worse should be reported. Stomach > problems can be > controlled with meds so don't just put up with > heartburn from pred or other > meds. Shortness of breath is significant - report > it right away. If you > find yourself feeling dizzy (even when you are in > bed) report it right away. > (Vertigo can be a sign of a flare.) Numbness or > extreme tenderness anywhere > should be reported. Leg cramps are another side > effect of meds that can be > controlled -- you don't have to live with them, tell > you doc and he will give > you a med to help. " White stuff " in your mouth > might be thrush (from meds) - > get treatment quickly before it spreads to the > esophagus. Extreme fatigue > may be significant for several reasons -- could be > medicine-induced diabetes, > for one, thyroiditis (hypothyroidism) for another. > Fingernails and toenails > that do not grow can be a sign of deficient > circulation. If your ears > === message truncated === ===== " A real friend is one who walks in when the rest of the world walks out. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 I have to disagree with this statement completely. I've never seen anything that list RP as a fatal disease. >>>>>>>>>>>>>>>>>>>>>>>>>>>>> It is considered a fatal disease in that many people who have it eventually die from a complication of RP -- but it is not unusual for people who have it to live 30 years and more as long as they are receiving treatment. The important thing is that a severe case left untreated can lead to death in two years or less and those unfortunate cases skew the statistics for the rest of us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 , Well I erased the rub off and I'm still confused. lol Guess it isn't you. I too read those articles about death rate. I can't find the article right now, but it gave stats like 74% live 8 years, etc. Don't quote me on those because I don't have the articles in front of me. They scared the doo doo out of me when I first read them. Now I don't believe a word of it. They said most deaths are caused from complications such as pneumonia, heart disease, etc. I'll find the article soon. When first dx and someone reads that it really does a mind thing. Soooo, everyone just remember that we're all here and we will be here for support, frustration, laughter, and lots of love. Thanks for all you've done for me. You can rub off on me any ol time. Love C Quote Link to comment Share on other sites More sharing options...
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