Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 I guess I would echo 's recommendations. I have Mixed Connective tissue disorder & am on AP & have a " grin and bear it attitude. " I didn't think things were real bad though. After an automobile accident and routine xrays, I was shocked and stunned to learn I have a lot of degenerative changes. They would've never routinely xrayed me for this as I don't have unbearable discomfort with this to the point where I would've complained. Patrice rheumatic XRAYS > I would like to remind everyone to have x rays done often. I have been > having wrists problems for a few months and when x rayed yesterday, found > it to be literally destroyed. I am looking at having to have it fused which > is really upsetting me. Now my feet and wrists are in this shape (I had my > first foot surgery several months ago to straighten out some damage). I > have been on the AP for five years and damage has marched on. When I was on > Plaquenil befor the AP( which I know has side effects) I had no damage. > This has all occurred while on the antibiotics. I always thought that > damage could not occur while on the AP, but was so wrong. > > On the outside you don't see it.. two ortho surgeons have been shocked when > they saw my Xrays as I look almost perfect, but the inside is an entirely > different story. > > Have any of you had a wrist fusion? If so please fill me in on some details > about loss of function, movement, etc. > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 > I would like to remind everyone to have x rays done often. I have been > having wrists problems for a few months and when x rayed yesterday, found > it to be literally destroyed. I am looking at having to have it fused which > is really upsetting me. Now my feet and wrists are in this shape (I had my > first foot surgery several months ago to straighten out some damage). I > have been on the AP for five years and damage has marched on. This is good advice, no matter what drug you're on. Docs tend to get a bit lazy and not bother with x-rays. I recently had to pester my doc to take hands and feet x-rays again - fortunately, small erosions, but nothing of the nature that is having to endure. Hard to figure why with some people the antibiotics don't seem to offer any protections, whereas with others, they seem to be very effective. Just goes to show you how we're all different. I know I was concerned that my erosions were getting worse after a year on the AP and it is a big part of why I switched. But others who have held in there, have come out ok. Go figure - wish I had the answer, but I sure don't. The alternatives (what some of you here call " toxic " ) can be rough for some people, as some are very prone to side effects. Yet, others never have a problem. Go figure again. It makes the choices and decison-making very difficult and my sympathies go out to anyone with these diseases. I can only say to follow 's advice - get those x-rays frequently and if you see highly destructive damage occurring, you may wish to reconsider the path you're on, whatever it may be. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 In a message dated 5/16/2004 2:51:10 PM Eastern Standard Time, pinto@... writes: Nice post, Mark. I've become convinced that what we call RA is actually many different diseases that present with similar symptoms and that's one of the reasons, aside from individual differences, a treatment that is effective for one person is ineffective for another. Unfortunately, after a year and a half on the AP, I am getting much worse, not better - I suspect I have something that doesn't respond to this treatment.... While I can't say for certain whether AP is helping me or not, I've only been on it for 6 weeks, I can say that it has improved my Sjogren's tremendously. 15 years ago I was finally diagnosed with Hypothyroidism, after I was nearly dead and had been through a series of docs who did everything but a TSH. Mine was very severe by the time I was diagnosed. I spent 7or 8 years on Synthroid which helped only a little, and by no means stopped the disease even though my TSH eventually returned to " normal " . I then learned about Armour and the deception about Synthroid. My doctor would only prescribe Levoxyl. I got the standard line about Armour being unstable. Then finally I found a doctor (after 15 years) who would prescribe Armour. I am on it for only a week, but already am starting to feel better. My point is, many of the symptoms of RA and thyroid disease are very similar. I did test positive for rheum factor when diagnosed, so it's difficult to tell what symptoms are from what disease and what medicine is helping what symptom. The only symptom I've had from RA that I didn't have with thyroid is intense pain and swelling of the joints. Now I've basically forgotten the point I was going to make--had to go chase down the kidlets--and of course by the time that was done my mind went blank. I was probably going to suggest you have the thyroid tests done based on what I copied and pasted of your message. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Nice post, Mark. I've become convinced that what we call RA is actually many different diseases that present with similar symptoms and that's one of the reasons, aside from individual differences, a treatment that is effective for one person is ineffective for another. Unfortunately, after a year and a half on the AP, I am getting much worse, not better - I suspect I have something that doesn't respond to this treatment.... Considering that there is no definitive diagnosis for RA, but rather it is diagnosed by a preponderance of certain symptoms, I think that supports this theory too. Regards, Mark Holmes wrote: > > > I would like to remind everyone to have x rays done often. I have > been > > having wrists problems for a few months and when x rayed > yesterday, found > > it to be literally destroyed. I am looking at having to have it > fused which > > is really upsetting me. Now my feet and wrists are in this shape > (I had my > > first foot surgery several months ago to straighten out some > damage). I > > have been on the AP for five years and damage has marched on. > > This is good advice, no matter what drug you're on. Docs tend to get > a bit lazy and not bother with x-rays. I recently had to pester my > doc to take hands and feet x-rays again - fortunately, small > erosions, but nothing of the nature that is having to > endure. Hard to figure why with some people the antibiotics don't > seem to offer any protections, whereas with others, they seem to be > very effective. Just goes to show you how we're all different. I > know I was concerned that my erosions were getting worse after a > year on the AP and it is a big part of why I switched. But others > who have held in there, have come out ok. Go figure - wish I had > the answer, but I sure don't. The alternatives (what some of you > here call " toxic " ) can be rough for some people, as some are very > prone to side effects. Yet, others never have a problem. Go figure > again. > > It makes the choices and decison-making very difficult and my > sympathies go out to anyone with these diseases. I can only say to > follow 's advice - get those x-rays frequently and if you see > highly destructive damage occurring, you may wish to reconsider the > path you're on, whatever it may be. > > Mark > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Unfortunately, > after a year and a half on the AP, I am getting much worse, not better - When I started the AP, I was told by the rheumatologist it could take 3 to 5 years just to turn around. Remission could take longer. I got worse for well over a year. My hands and feet were badly deformed before starting the therapy, and range of motion was already severly restricted in neck, shoulders and hips. Then came a Herxheimer to end all Herxheimers. The inflammation wouldn't quit and I was sure my wrists, knees and ankles were gone. After 19 months on the therapy I had my first experience indicating things just may be turning around. I eventually regained full use of the wrists, knees and ankles. When we first started this support group there was a woman that joined us who had a very severe case of RA that left her badly crippled. Both hips had been replaced. She had been on the therapy a number of years with absolutely no results. Then one day everything changed. Soon she had her life back. Response time varies widely between patients. > I suspect I have something that doesn't respond to this treatment.... Possibly, but I suggest you pull up the FAQ on www.rheumatic.org and go over the list of things to check when you aren't responding to see if there is something impeding your progress. The list is not complete. Hopefully it will be updated soon. Diet and detoxification can be the difference between a responder and a non-responder. Ethel> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 I got worse for > well over a year. My hands and feet were badly deformed before starting the > therapy, and range of motion was already severly restricted in neck, > shoulders and hips. Then came a Herxheimer to end all Herxheimers. The > inflammation wouldn't quit and I was sure my wrists, knees and ankles were > gone. After 19 months on the therapy I had my first experience indicating > things just may be turning around. I eventually regained full use of the > wrists, knees and ankles. I have sometimes had very nasty flaring espisodes where I was concerned that my joints had to be getting destroyed, only to come out of those flaring episodes and realize nothing horrible had happened (except for some perhaps slow progression). But I don't think that is the case with - her x-rays are are showing that there is significant damage. That would concern me. I don't know what she plans to do, but if 5 years from now, the AP begins to work for her and all her joints are dysfunctional by then , would that be considered a success? Somehow I think we should perhaps measure success by who has the least amount of damage over the years. I would not be happy with something that I had invested considerable time in treating only to find that it had damaged me significantly. I'm not saying that the AP causes this to happen - for many it probably does not, but like some things, not everything works for everybody. Some folks may have very severe RA that is perhaps even overwhelming the AP (which takes time) initially and causing a lot of this damage to happen. I realize the theories of AP (boosting the immune system) and the DMARDS (trying to suppress it) are contradictory, thus I'm not sure what the answer is to someone who has started on the AP but whose damage is of the rapidly progressing type. That's when the decision making gets very tough - I guess at that point, it comes down to how strongly you feel about one form of treatment vs another, all the time trying to be careful not to be too stubborn about something that might not be working for YOU. It gets very complicated, especially when you start throwing in diet, detoxing, herbs, etc, into the mix, as it is difficult to know what might be helping or hurting your progress. I went through this same decision-making myself and believe me, it was not easy. I'll never know if it was the right choice, but I do know that my damage remains more or less minimal, despite the NIH docs telling me that my lab specimens (they biopsied my knee) indicated that I was facing a serious case of this disease (apparently my slides corresponded with those who had serious onsets). The fact that I have minimal damage or so it would seem, doesn't mean I've gone into remission or that I don't continue to have flaring, cause I do and I'm sure the disease is still slowly progressing. But I measure my treatment by how little damage I have (as long as side effects of the drugs I take are not hurting me - knock on wood). For those of you fortunate enough to have gone into remission on AP, I suspect you will think I'm nuts and that's ok, cause if I had gone into remission on AP, I'd feel the same way. But it's not always a walk in the park for some despite their very best efforts, so all I have to say is best of luck to all of you , no matter which path you choose. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Are you supposed to get Xrays done to see if your bones/joints have deteriorated from RA at all? In Rheumatoid Arthritis , " Deborah Bargad " <dbargad@...> wrote: > > Dear - Alot of people benefit from it. I wasnt one of them but my > boyfriend avoided surgery and works ten hour days as well as golfs due to > the healing benefits of a chiropractor. Give it a shot. Remember that > fibromyalgia might be to blame as well as degeneration. I tried a massage > therapist but needless to say, that was my first and last experience. I > flared for days as well. A kinder form of massage is in order. A hot > shower works miracles on aching muscles. Hugs, Deborah > > On 7/18/06, <kyrik@...> wrote: > > > > > does seeing a chriopractor help? i get a lot of pain in my neck and a > > > dr just opened an office near my job and i thought i'd see him.. does > > > that help at all?--- > > > > Good question! I used to see a chiropractor who did the " Activator " > > method (you can see it here... > > http://www.total-wellness-center.net/activator.html ) > > > > It wasn't manipulation but I don't know if it's good for RA either. > > > > Couldn't manipulation aggravate RA? > > > > My massage therapist just beat me to a pulp on Th and the flare since > > and the pain has > > been unbearable. Needless to say he knows nothing of RA. I guess brutal > > massage might not be so good for us even tho I used to love it > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 They cause oxidative damage. Take lots of antioxidants before and after for several days. CT scans and radionuclear scans have more radiation. On 2/4/10, Peggy <diamond12345@...> wrote: > > > > are xrays dangerous for our toxic children? > > > -- God's blessings in Christ, Your Partner in Health, N. Rydland, M.D. Founder and developer of kidsWellness, Inc. Natural products and information for healthier families www.kidswellness.com www.rydlandjuice.com Main office: 1921 Commonwealth Drive Charlottesville, VA 22901 434-984-KIDS (5437) Fax: 434-984-5439 Other offices: 140 N.E. 119 St North Miami, FL 2316 Hollywood Blvd Hollywood, Fl 33020 12595 S.W. 137 Ave, Suite 108 Miami Fl 33186 135 San Lorenzo Ave., Suite 640 Coral Gables, FL 33146 Quote Link to comment Share on other sites More sharing options...
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