Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi, Since I have lupus dx, I have been treated for autoimmune disease - with prednisone and placqunil (antimarial). Didn't get relief and now being treated for lyme and LLMD doesn't believe in autoimmunity theory in which body makes antibodies to own tissues. He thinks it is infection making antibodies. Any of the science orientated people here show would like to make some sense of these, please feel free to try!! Lol! - so little is really understood well by medical profession in general, and again it seems to be up to us! Take care, Chrisite >From: " Dr. Steve " <moores@...> > >Is any one being treated from an auto immune perspective. Other than steriods what other treatments are involved. > >Steve > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 what is placqunil (antimarial) which is giving you the best results? Steve or ChristieTabacchi wrote: > From: or ChristieTabacchi <tab@...> > > Hi, > > Since I have lupus dx, I have been treated for autoimmune disease - with > prednisone and placqunil (antimarial). Didn't get relief and now being > treated for lyme and LLMD doesn't believe in autoimmunity theory in which > body makes antibodies to own tissues. He thinks it is infection making > antibodies. Any of the science orientated people here show would like to > make some sense of these, please feel free to try!! Lol! - so little is > really understood well by medical profession in general, and again it seems > to be up to us! > > Take care, > > Chrisite > > >From: " Dr. Steve " <moores@...> > > > >Is any one being treated from an auto immune perspective. Other than > steriods what other treatments are involved. > > > >Steve > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi, Placqunil is an antimarial used in autoimmne disease to slow itls progress. It is supposed to work with pain and to keep prednisone dose lower. I started back on it and have had less pain, but I also take neurontin, so don't really know what is doing what. Now with lyme treatment, I am supposed to feel worse before better, so really the only relief I've had is to try and accept myself the way I am now - which is not easy to do! Just hope *something* will work at some point! Take care, Christie ri.edu> > >what is placqunil (antimarial) which is giving you the best results? >Steve > > or ChristieTabacchi wrote: > >> From: or ChristieTabacchi <tab@...> >> >> Hi, >> >> Since I have lupus dx, I have been treated for autoimmune disease - with >> prednisone and placqunil (antimarial). Didn't get relief and now being >> treated for lyme and LLMD doesn't believe in autoimmunity theory in which >> body makes antibodies to own tissues. He thinks it is infection making >> antibodies. Any of the science orientated people here show would like to >> make some sense of these, please feel free to try!! Lol! - so little is >> really understood well by medical profession in general, and again it seems >> to be up to us! >> >> Take care, >> >> Chrisite >> >> >From: " Dr. Steve " <moores@...> >> > >> >Is any one being treated from an auto immune perspective. Other than >> steriods what other treatments are involved. >> > >> >Steve >> > >> > >> >> > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > >>This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 or ChristieTabacchi wrote: > From: or ChristieTabacchi <tab@...> > > Hi, > > Since I have lupus dx, I have been treated for autoimmune disease - with > prednisone and placqunil (antimarial). Didn't get relief and now being > treated for lyme and LLMD doesn't believe in autoimmunity theory in which > body makes antibodies to own tissues. He thinks it is infection making > antibodies. Any of the science orientated people here show would like to > make some sense of these, please feel free to try!! Lol! - so little is > really understood well by medical profession in general, and again it seems > to be up to us! > > Take care, > > Chrisite Hi Christie, It would make more sense to me that our bodies are fighting some unrecognized infection rather than fighting our own bodies. That doesn't sound logical when you consider how intricate our body systems are. How did you do with the oral interferon??? Haven't heard you mention it in awhile. Also I'm wondering does anybody know what test results fit the profile of a candidate for success with the oral interferon? Sounds like many have gotten worse on it, but some had high natural interf. levels........what else can we look for to determine who would benefit from it? Am wondering if those of us who appear to be " autoimmune " (have the high sed rate instead of low) would be better candidates??? , Shari or Ann or anybody know? Thanks, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Hi Christie, > >It would make more sense to me that our bodies are fighting some unrecognized infection rather than fighting our own bodies. Yes, it does! It is thought by some that infection causes the antibodies to attack our tissues. Whether it is ongoing infection is contraversial. That doesn't sound logical when you consider how intricate our body >systems are. How did you do with the oral interferon??? SInce I know I cannot get more, I'm afraid to take what I have - at least until I know if it will be avaliable or not. Haven't heard you mention it in awhile. Also I'm wondering does anybody know what test results fit the profile of a candidate for success >with the oral interferon? Sounds like many have gotten worse on it, but some had high natural interf. levels........what else can we look for to determine who would benefit from it? It is trials for sjogrens syndrome now which is an autoimmune disease. Also for FMS, although no one seems to know exactly what this is! It has also been used in a lupus pt, but that is by individual and no trials are on for this as far as I know. Am wondering >if those of us who appear to be " autoimmune " (have the high sed rate instead of low) would be better candidates??? , Shari or Ann or anybody know? > >Thanks, Marcia I have low SED rate, but ANA has been as high as 1:5000, with 1:10 being normal. So I'm a mystery. With high sed rate there is inflammation, and that does need to be treated. How are you doing with that now? I would like to hear about anything concerning autoimmune theory in general, and interferon treatment for it also. Take care, CHristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 or ChristieTabacchi wrote: > It is trials for sjogrens syndrome now which is an autoimmune disease. Also > for FMS, although no one seems to know exactly what this is! It has also > been used in a lupus pt, but that is by individual and no trials are on > for this as far as I know. Does anybody know how these trials are going so far??? Christie have you tried to get the interf. from the Texas source where gets hers? That is actually one cheap drug I could afford! If only I knew it would help. Does the interf. help lupus patients as well?? Steve, did you try the interferon too???? > I have low SED rate, but ANA has been as high as 1:5000, with 1:10 being > normal. Christie I'm revealing my ignorance here, but since my doc never wants to run any tests I don't know what the ANA is??? Maybe something I should get tested too? What does that test indicate? Does it relate to your lupus or lyme? > So I'm a mystery. With high sed rate there is inflammation, and > that does need to be treated. How are you doing with that now? Was doing much better on the prednisone, until my monthly cycle started and then much of the pain came back! Thats why its hard for us females to figure ANYTHING out because hormones are the wild card in our deck and change from day to day.....hard to determine what symptoms are what. I increased the pred. dose and its given me headaches last two days......I'm usually one of the lucky ones not prone to headaches..... > > > I would like to hear about anything concerning autoimmune theory in > general, and interferon treatment for it also. yes, me too!!!! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 I tried it and it just made me sick, I still have some left maybe I should try a tiny dose but I think I already did that too. Steve Marcia Grahn wrote: > From: Marcia Grahn <mgrahn@...> > > or ChristieTabacchi wrote: > > > It is trials for sjogrens syndrome now which is an autoimmune disease. Also > > for FMS, although no one seems to know exactly what this is! It has also > > been used in a lupus pt, but that is by individual and no trials are on > > for this as far as I know. > > Does anybody know how these trials are going so far??? Christie have you tried to get the interf. from the Texas source where gets hers? That is actually one cheap drug I could afford! If > only I knew it would help. Does the interf. help lupus patients as well?? > > Steve, did you try the interferon too???? > > > I have low SED rate, but ANA has been as high as 1:5000, with 1:10 being > > normal. > > Christie I'm revealing my ignorance here, but since my doc never wants to run any tests I don't know what the ANA is??? Maybe something I should get tested too? What does that test indicate? > Does it relate to your lupus or lyme? > > > So I'm a mystery. With high sed rate there is inflammation, and > > that does need to be treated. How are you doing with that now? > > Was doing much better on the prednisone, until my monthly cycle started and then much of the pain came back! Thats why its hard for us females to figure ANYTHING out because hormones are the wild > card in our deck and change from day to day.....hard to determine what symptoms are what. I increased the pred. dose and its given me headaches last two days......I'm usually one of the lucky ones > not prone to headaches..... > > > > > > > I would like to hear about anything concerning autoimmune theory in > > general, and interferon treatment for it also. > > yes, me too!!!! > > Marcia > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 >Christie I'm revealing my ignorance here, but since my doc never wants to run any tests I don't know what the ANA is??? Maybe something I should get tested too? What does that test indicate? Hi, ANA is antinuclear antibody which is a basic test used to detect antibodies in blood. It autoimmune problem although it is not specific to lupus - could be another autoimmune problem. This is ALWAYS done if autoimmune problem is suspected, and you need to have this done considering your SED rate. If your present RHEUM won't do this, then find a real rheumatologist!! This is serious stuff. >Does it relate to your lupus or lyme? It is almost always seen in lupus and LLMD says it appears in lyme also. >> So I'm a mystery. With high sed rate there is inflammation, and >> that does need to be treated. How are you doing with that now? > >Was doing much better on the prednisone, until my monthly cycle started and then much of the pain came back! Thats why its hard for us females to figure ANYTHING out because hormones are the wild >card Pred will definately reduce inflammation, but does your doc know you increased the dose? He needs to know about the pain also. Are you seeing a rheumatologist?? >> I would like to hear about anything concerning autoimmune theory in There is a site at hamline university for lupus and they also run lupus-l, which is a list for those with autoimmune diseases. Since I have lost my addresses, I will give address a shot - . check: http://health./health/Diseases_and_Conditions/Disease_Feed_Data/Sys temic_lupus_erythematosus/index.html This computer is old and I cannot access sites I want! Also, try a search on on autoimmmunity - for more general info. I will write lupus-l and ask for addy for hamline universities web site on lupus. As I said this computer cannot access it. CHristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 >I tried it and it just made me sick, I still have some left maybe I should try a tiny dose but I think I already did that too. > >Steve Hi, How did it make you sick? >Marcia Grahn wrote: >>> Does anybody know how these trials are going so far??? Christie have you tried to get the interf. from the Texas source where gets hers? That is actually one cheap drug I could afford! If >> only I knew it would help. Does the interf. help lupus patients as well?? I got mine through Joe Cummins at Amarillo biosicences( referred by ) who recommeded a doctor to write a script for me. The script had to go to Texas and then to Canada for me to get the lozenges sent to me. Talk about round Robin Hoods Barn! Now the FDA will not allow Amarillo Biosciences offer interferon to those who are not in studies, so that source is now lost. For sjogrens is increases saliva and helps mucous membranes produce liquid. It also seems to help pain in fibromyalgia, and of course it has given some people here their lives back - Shari, Ann.... Don't know how trials are going because they are not done yet and results are not published. Whether is is interferon, ampligen, affordable tests, meds and Doctors, or whatever, it sure would be nice if these things were more available to those needing them! Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2001 Report Share Posted March 24, 2001 have no idea, there is probably no treatment for it just as there is no effective treatment for lupus so even if they identified it in your body I don't know what good it would do at this point. steve b. auto immune > so what are they doing in Japan regarding auto immune factors? > How do the test for it? What drugs do they use? > thanks > steve > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Auto antibodies to thyroid TOTALLY gone after long spell with abx. Had I not pursued the " infectious " trail (which as you all know by now led me to Lyme) I rekon chances are my thyroid would've been destroyed by now and I'd be on thyroid hormones as my TSH was very high (now totally normal), my T3 and T4 were borderline low (now middle of range).FWIW Nelly auto immune > > > > so what are they doing in Japan regarding auto immune factors? > > How do the test for it? What drugs do they use? > > thanks > > steve > > > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Has anyone heard of immune issues being a factor in women not being able to get pregnant? I have but not sure if Samters would be classified. I do not know how to tell infertility doctors that Samters may be an issue in us not being able to get pregnant. Anyone have any ideas?? Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Actually our(Samterites) immune systems are over-reactive. Auto immune I have a question, hopefully not a stupid one. If we are auto immune, does that mean our immune system is lower than other people? I'm just wondering if this is why I seem to get sick so much easier. Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Colleen, it's good to hear that they found no fistulas. I'm assuming you are talking about urinary incontinence (not fecal). What is the next best guess for the reason? RA does cause profound fatigue in many people, and thyroid problems can, too. If your thyroid isn't functioning well, that can also cause weight gain. Have you seen an endocrinologist? Are you taking thyroid replacement hormone? If you are on prednisone for your RA, that can also cause significant weight gain. We've been talking about diet a bit over the last few days. In my own case, eliminating dairy seemed to help my fatigue immensely. Could be a coincidence, but, as much as I love dairy, I won't eat much of it anymore. I miss it, but feel much better without it. Exercise can also help you feel more energetic. It works for me. I hope you will enjoy Curves and start going regularly. A few members have mentioned it previously, and said it was a good program. Congratulations on quitting smoking! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Auto Immune > , you were right, not fissure, but fistula. I am glad to say the cat scans showed no fistula's, Yea!! Sounds like something I definitly DO NOT want to have. Didn't enjoy the 3 bottles of barium, but if anyone has to drink barium, make sure it's cold, refrigerate it, makes it much easier. > Welcome to all the newbees. I don't post often, but this is a GREAT group for SUPPORT and INFORMATION!! I'm still incontinient, looking for why. I have RA and Colleageous Colitis as well as thyroid problems, all began a few days of each other. As others have said before, I sure miss my old life. It's been about a year and 1/2 and I think I have finally accepted the fact that I have a serious illness. Fatique is my #1 problem. I joined " Curves " which I think is very good, but I work full-time and I usually come home and sleep rather than exercise. I guess I just have to make up my mind to go and exercise. I stopped smoking after 38 years Feb. 2002, but I think the RA has had more of an effect on my weight gain than not smoking. I'm up about 40 lbs and gainning. I also think the weight gain is because my life revolves around my work and my health. Before this illness, I was never over a size 10, even at 56 years of age. I thing I was active enought that I burned off what I ate, even when I stopped smoking. Now it seems my life revolves arounf work, sleep and food. Sure that is why I'm now so heavy and my self esteem has suffered. I would love anyone to share how they are coping with the fatique. God Bless all of the people in Flordia and the Caribean that have been affected by all the hurricanes. When I think I have problems, I just listen to the news and thank God that it isn't me. God Bless, Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Colleen, You asked about how people are dealing with fatigue. I don't have RA, but a different autoimmune disorder, Dercum's Disease which does cause fatigue. I don't know how you manage, working full time--I know I couldn't do it (but SSI doesn't seem to agree.) As far as my " other life " is concerned, where I used to walk miles, bike, garden, play tennis, and lots of other active things, I am learning to be content with less. If I can do a small measure of the things I enjoy, and try to stop before I become totally exhausted, I'm learning to be happy with that. Sometimes when I wake up in the morning, the temptation is strong to stay in bed, but I make myself get up anyway, dress, fix breakfast, and then if I'm still tired, then I know I need to take it easier this day. I might do a couple of small tasks, and sometimes the energy returns, sometimes it takes a nosedive. I try to " bank energy " by resting ahead of a day when I know I'm going to be more active, like taking care of the grandkids (a 4-year old and 18-mo. old triplets.) Other than that, that's about all I can suggest. Congratulations on becoming a non-smoker, my son in law quit in April after 30 years, and he's feeling much better. Peace, Judi ] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Colleen, It is hard, but if you go for a while you will find that the exercise makes you feel better and gives you more energy. There will be lots of times you will not want to go, and times you give into that desire to head straight for home. But you'll know that most times you need to just do it, because it pays off so much in how you feel. Jennie I joined " Curves " which I think is very good, but I work full-time and I usually come home and sleep rather than exercise. I guess I just have to make up my mind to go and exercise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 I keep getting asked if CMT is an auto-immune disease. I keep saying that I don't think it is. But I am getting asked so often I am questioning my answer. Anybody? More information? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 , You're right, CMT is NOT an Auto-immune disease. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 : Yes, MS in an auto immune disease. Marin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Interesting. My husband's doctor did the same thing, treating him for the possible auto immune disease in the hopes it was treatable, and his second or third IVIG treatment gave him an anaphylactic shock, twice, and he ended up in hospital, also. Elinor Quote Link to comment Share on other sites More sharing options...
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