Question:
In article <40b08fef$…@news.tm.net.my>, hooi-bin <ch…@tm.net.my> wrote: >Hi all, >I read with great interest that some are on Imuran, Cytoxan, they sound like >really ’serious and big’ drugs. My question is, what calls for use for these >drugs? Is it when pred. are no longer working?
Hmm, it’s more when you’ve already failed a bunch of the intermediate drugs. At least in the US, you have Plaquenil, methotrexate, Azulfidine, and Arava to try, then a bunch of the newer biotech drugs (though the insurance companies often kick and scream about the cost if you don’t have a concurrant diagnosis of something like rheumatoid arthritis or chron’s disease). Those drugs include Enbrel, Remicade (has to be given with MTX), Humira, and Kineret (though I’m not sure anyone’s tried that for lupus). The biologics also carry a small risk of causing lupus-like symptoms, so some RDs aren’t willing to use them for patients who just have lupus. A bunch of us with with mixed syndromes use these drugs and haven’t had problems (other than the drugs fading out over time), so the risk may be over-stated. If you have a bunch of organ involvement, you can’t afford, can’t obtain, or can’t tolerate the newer biologics, then you move on to the "chemo" drugs. There’s also treatment with immunoglobulins in severe cases, but I’m not exactly where that fits in. We had at least one memeber here who’s been through that, and it didn’t sound like fun. I have mixed lupus and rheumatoid arthritis (the running joke is that a big ugly troll named "Rhupus" has been kicking my ass), and I’ve so far failed Plaquenil, Azulfidine, Arava, and MTX. And the Enbrel appears to be fading out. Since I can’t take MTX, Remicade isn’t an option, so we’ll probably be trying Humira next. Given how incredibly awful _my_ experiences with MTX were, I might chose non-treatment over Cytoxan or Sandimmune. Most people tolerate MTX just fine, but even the mildest of the chemo drugs made me incredibly ill. I’m hoping I don’t ever have to find out about the stronger ones. And I’ve now posted way more than I’m supposed to be. My shoulder is still messed up and I’m waiting on a new keyboard that’s supposed to make things easier for me. — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris, Faultline Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"
Response:
Hi Bin, My name is Tori and I recently had a close encounter with Cytoxan, but instead was able to take Imuran instead. I’m sure you already know they are both essentially forms of Chemotherapy, Cytoxan w/IV treaments and Imuran is pill form. I believe they are used to hit different target areas, but I had to take treaments because my kidneys were failing and thats the step before dialysis. Imuran is not as intense as cytoxan, but it does have some of the side effects, such as nausea and hair lose. My hair is pretty thick and it really thinned out, but it wasnt bad at all. After about 6 weeks of treatment, the doctor gave me a rest from it because my kidney function had improved significantly, and when i went to my next visit to return back on to treatments, my kidney function was almost to a normal functioning kidney, so I didn’t even have to get back on it. Well I hope this answers your questions. I’d love to answer anyore questions you have.
Response:
> There’s also treatment with immunoglobulins in severe cases, but I’m not > exactly where that fits in. We had at least one memeber here who’s been > through that, and it didn’t sound like fun.
Do you mean me? I had intravenous gammagobulin for my muscle weakness for awhile….it seemed to be of some help with no obvious side-effects…. G.
Response:
In article <40B3F096.B6CDB…@casselman.net>, Grace Casselman <gr…@casselman.net> wrote: >> There’s also treatment with immunoglobulins in severe cases, but I’m not >> exactly where that fits in. We had at least one memeber here who’s been >> through that, and it didn’t sound like fun. >Do you mean me? I had intravenous gammagobulin for my muscle weakness for >awhile….it seemed to be of some help with no obvious side-effects….
Actually, I remember someone else having a rather extreme reaction to IVGG. She ended up with aseptic meningitis and had to have IV steroids to counter the reaction. It was several years back. — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris, Faultline Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"
Response:
Cindy in Texas maybe? Sherry "Lee Thompson-Herbert" <l…@gw.retro.com> wrote in message
news:c91c8d$iap$1@gw.retro.com… – Hide quoted text — Show quoted text -> In article <40B3F096.B6CDB…@casselman.net>, > Grace Casselman <gr…@casselman.net> wrote: > >> There’s also treatment with immunoglobulins in severe cases, but I’m not > >> exactly where that fits in. We had at least one memeber here who’s been > >> through that, and it didn’t sound like fun. > >Do you mean me? I had intravenous gammagobulin for my muscle weakness for > >awhile….it seemed to be of some help with no obvious side-effects…. > Actually, I remember someone else having a rather extreme reaction to > IVGG. She ended up with aseptic meningitis and had to have IV steroids > to counter the reaction. It was several years back. > — > Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 > Head Muso, White Rats Morris, Faultline Morris > See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
Sorry. Just saw this one, Sherry. It was Cindy W from Texas who ran into those problems. Good memory there. BJ-Sk. Canada "Sherry" <hurst…@NoSpam.invalid> wrote in message
news:SJdtc.57575$E65.40216@newssvr29.news.prodigy.com… – Hide quoted text — Show quoted text -> Cindy in Texas maybe? > Sherry > "Lee Thompson-Herbert" <l…@gw.retro.com> wrote in message > news:c91c8d$iap$1@gw.retro.com… > > In article <40B3F096.B6CDB…@casselman.net>, > > Grace Casselman <gr…@casselman.net> wrote: > > >> There’s also treatment with immunoglobulins in severe cases, but I’m > not > > >> exactly where that fits in. We had at least one memeber here who’s > been > > >> through that, and it didn’t sound like fun. > > >Do you mean me? I had intravenous gammagobulin for my muscle weakness for > > >awhile….it seemed to be of some help with no obvious side-effects…. > > Actually, I remember someone else having a rather extreme reaction to > > IVGG. She ended up with aseptic meningitis and had to have IV steroids > > to counter the reaction. It was several years back. > > — > > Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 > > Head Muso, White Rats Morris, Faultline Morris > > See my CafePress Shops:
http://www.retro.com/employees/lee/CafePress.html – Hide quoted text — Show quoted text -> > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
Has anyone heard from Cindy Ward in Texas lately? It has been a long time since she posted and she had been so ill and then had all the flood damage etc. If you are lurking Cindy say hey! Hugs, Sherry "BJ" <B…@sk.nojunk.ca> wrote in message
news:10cn3gp3qinpl80@corp.supernews.com… – Hide quoted text — Show quoted text -> Sorry. Just saw this one, Sherry. It was Cindy W from Texas who ran into > those problems. Good memory there. > BJ-Sk. Canada > "Sherry" <hurst…@NoSpam.invalid> wrote in message > news:SJdtc.57575$E65.40216@newssvr29.news.prodigy.com… > > Cindy in Texas maybe? > > Sherry > > "Lee Thompson-Herbert" <l…@gw.retro.com> wrote in message > > news:c91c8d$iap$1@gw.retro.com… > > > In article <40B3F096.B6CDB…@casselman.net>, > > > Grace Casselman <gr…@casselman.net> wrote: > > > >> There’s also treatment with immunoglobulins in severe cases, but I’m > > not > > > >> exactly where that fits in. We had at least one memeber here who’s > > been > > > >> through that, and it didn’t sound like fun. > > > >Do you mean me? I had intravenous gammagobulin for my muscle weakness > for > > > >awhile….it seemed to be of some help with no obvious side-effects…. > > > Actually, I remember someone else having a rather extreme reaction to > > > IVGG. She ended up with aseptic meningitis and had to have IV steroids > > > to counter the reaction. It was several years back. > > > — > > > Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 > > > Head Muso, White Rats Morris, Faultline Morris > > > See my CafePress Shops: > http://www.retro.com/employees/lee/CafePress.html > > > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
Hi all, I read with great interest that some are on Imuran, Cytoxan, they sound like really ’serious and big’ drugs. My question is, what calls for use for these drugs? Is it when pred. are no longer working? Thanks, love – bin
Response:
"hooi-bin" <ch…@tm.net.my> wrote in message
news:40b08fef$1_1@news.tm.net.my… > Hi all, > I read with great interest that some are on Imuran, Cytoxan, they sound like > really ’serious and big’ drugs. My question is, what calls for use for these > drugs? Is it when pred. are no longer working? > Thanks, love – bin
Some consider at least Imuran and Methotrexate to have less risk to them than pred. Some can’t tolerate prednisone’s side effects. But I think in general, yes, they are used in cases that need big guns but aren’t responding to pred. Cytoxan is one of the few (if not the only) drug that directly crosses the blood-brain barrier to suppress immune cell activity in the brain and therefore is the drug of choice for central nervous system lupus. — I am not a Lupus/Fountain Pen Expert. I am not a Medical Doctor. I do not make my living in medicine or in fountain pen repair. All opinions herein are based solely on my experience and observations. Take them with a grain of salt (unless you have high blood pressure…<g>)
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