Question:
On Wed, 17 Jul 2002 23:15:36 +0100, "Amarpal Gakhal" <a…@talk21.com> wrote: >Hi everyone, >This is my first post to this group. My mother has had Lupus for the past >three years and it is simply getting worse. She is currently on both >Plaquenil and Celebrex.
The Plaquenil can be great for mild symptoms but if she is getting this much worse it seems she should probably be talking to her rheumy about more intense treatment. Do you know her Plaquenil dose? Sometimes going up to 600 or 800 mgs/day can be enough to get through a flare. >only lasts a couple of months. Currently her hands and especially her feet >are VERY swollen and painful and it is difficuly for her to hold things and >even walk a few steps. Has anyone got any suggestions for this swelling? >Someone has suggested soaking in hot bath everyday???
a hot bath may be soothing but I would talk to the doctor about it before making it a habit. For some of us, heat can make us feel pretty crummy. If she does do this though – she needs to make sure she stays hydrated because a long soak in a hot bath will cause you to sweat out and she should have water on hand next to her. >Also I was reading on the web about IV Cytoxan and more recently Stem Cell >treatment. Has anyone had experience with either of these.
Both are more extreme approaches to treating lupus. IV Cytoxan is most often used to treat organ-threatening disease (kidneys, central nervous system) Though in these cases it can be very helpful. I believe some who have severe, debilitating joint pain are sometimes candidates for Cytoxan. This is a chemo drug though and has serious risks to it so it has to be carefully considered. Stem Cell Transplant in the US (and most other countries probably) is still in clinical trial only and not available as standard treatment. It is very promising but again, is only for life-threatening disease. The requirements to get into the trials are very rigid. >I would like to hear from anyone who has any tips on reducing the pain and >swelling.
as Judith pointed out – celebrex can be bad for lupus patients because so many of us are sensitive to sulfa drugs (sulfonamides). She might need to consider a different anti-inflammatory med. To be honest, the only thing that has reduced my pain is a regular regimen of Ultram (Tramadol) and Plaquenil. I do not deal with much swelling so I can’t help on that. Is she getting enough fluids? It may seem counterintuitive but general swelling (edema) can be reduced by proper fluid intake. If she doesn’t have kidney problems than the standard 4-8 glasses a day is fine as long as she is not otherwise losing fluids due to heat or activity. Meanwhile - there are numerous other routes to consider if she hasn’t already: Different NSAIDs such as Naproxen (though this can be hard on the gut), milder "chemo" drugs like Methotrexate and Imuran, and steroids such as prednisone. MTX is often the next step after plaquenil but it is often combined with a brief steroid treatment to get the pain/inflammation under control and allow the MTX to start working. There is a FAQ (see my sig below) for this group which will give you a little more detailed info re: treatments. Also, Andy’s site and Joanne’s site are excellent sites that are UK-based and may offer more resources for your mother. http://www.kitzbuhel.demon.co.uk/lupus http://www.uklupus.co.uk/ back to the bath thing briefly. It may be perfectly safe so do look for more educated answers on that one. for my hands, when they are especially painful, I have a "paraffin spa" (a tub that holds hot/melted paraffin). Dip my hands about 5 or 6 times to coat them well then wrap them in insulating gloves for 20-30 mins. This provides about an hour or so of relief – long enough for me to get settled and go to sleep for the night. But I do not have swelling or inflammation in my hands that much – just pain. so I don’t know if that would be appropriate for her or not. Hope someone else can tell you more on that. HTH, KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Thanks for the reply..I very much appreciate it. :-> "Amarpal Gakhal" <a…@talk21.com> wrote in message
news:uYlZ8.1135$E35.219@news-binary.blueyonder.co.uk… – Hide quoted text — Show quoted text -> Hi everyone, > This is my first post to this group. My mother has had Lupus for the past > three years and it is simply getting worse. She is currently on both > Plaquenil and Celebrex. In the past year she has had localised steroid > injections to her shoulders, knees and feet. However the effects of these > only lasts a couple of months. Currently her hands and especially her feet > are VERY swollen and painful and it is difficuly for her to hold things and > even walk a few steps. Has anyone got any suggestions for this swelling? > Someone has suggested soaking in hot bath everyday??? > Also I was reading on the web about IV Cytoxan and more recently Stem Cell > treatment. Has anyone had experience with either of these. > I would like to hear from anyone who has any tips on reducing the pain and > swelling. > I wish you all good health. > Thanks > Amar Gakhal > Wolvehampton > England > Email: a…@talk21.com
Response:
Hello Amar and welcome. Some of us here don’t have lupus but our loved ones do, so stick around. We love having new posters, really. Autoimmune often runs in families. Do you have thyroid problems or such? Amar is a nice name. Are you male or female? Don’t mean to pry but just curious. Anyhow, post, anytime. Sometimes we just read and relate (if we don’t have the answers and/or aren’t feeling well enough to reply), but you’ll find lots of info and caring here. J – Hide quoted text — Show quoted text -Amarpal Gakhal wrote: > Thanks for the reply..I very much appreciate it. :->
Response:
Thanks for all the support. Ask anyhting u want ..I don’t mind.. I am male and 25 and was born in England. I am real worried about my mother who’s symptoms are getting worse daya by day and fell that the reumy doesn’t really care. Nice to know there are people out there who can listen. Thanks Amar "J" <jwoot…@execulink.com> wrote in message
news:3D370ED4.D4F2E474@execulink.com… – Hide quoted text — Show quoted text -> Hello Amar and welcome. > Some of us here don’t have lupus but our loved ones do, so stick around. > We love having new posters, really. > Autoimmune often runs in families. Do you have thyroid problems or such? > Amar is a nice name. Are you male or female? Don’t mean to pry but just > curious. > Anyhow, post, anytime. > Sometimes we just read and relate (if we don’t have the answers and/or aren’t > feeling well enough to reply), but you’ll find lots of info and caring here. > J > Amarpal Gakhal wrote: > > Thanks for the reply..I very much appreciate it. :->
Response:
Hi Amar, I am sorry to be so slow in responding to you. Welcome. I see that you have received some good replies already. I would like to suggest that cold packs would perhaps be better for swelling and inflammation. I also feel that your Mom may need a stronger drug than Plaquinil. Imuran and prednisone together are working well for me. Both are taken orally. I hope you will keep talking to us. Your Mother is lucky to have a son who cares so much. BJ-Saskatchewan, Canada "Amarpal Gakhal" <a…@talk21.com> wrote in message
news:iK%Z8.10168$Fm3.6089@news-binary.blueyonder.co.uk… – Hide quoted text — Show quoted text -> Thanks for all the support. > Ask anyhting u want ..I don’t mind.. > I am male and 25 and was born in England. > I am real worried about my mother who’s symptoms are getting worse daya by > day and fell that the reumy doesn’t really care. > Nice to know there are people out there who can listen. > Thanks > Amar > "J" <jwoot…@execulink.com> wrote in message > news:3D370ED4.D4F2E474@execulink.com… > > Hello Amar and welcome. > > Some of us here don’t have lupus but our loved ones do, so stick around. > > We love having new posters, really. > > Autoimmune often runs in families. Do you have thyroid problems or such? > > Amar is a nice name. Are you male or female? Don’t mean to pry but just > > curious. > > Anyhow, post, anytime. > > Sometimes we just read and relate (if we don’t have the answers and/or > aren’t > > feeling well enough to reply), but you’ll find lots of info and caring > here. > > J > > Amarpal Gakhal wrote: > > > Thanks for the reply..I very much appreciate it. :->
Response:
"Amarpal Gakhal" <a…@talk21.com> wrote in message
news:iK%Z8.10168$Fm3.6089@news-binary.blueyonder.co.uk… > Thanks for all the support. > Ask anyhting u want ..I don’t mind.. > I am male and 25 and was born in England. > I am real worried about my mother who’s symptoms are getting worse daya by > day and fell that the reumy doesn’t really care.
Unfortunately, a lot of them seem not to care. However, there *are* good ones, and it is worth the search. > Nice to know there are people out there who can listen.
But better to find a Rheumy who listens!
Response:
Hi everyone, This is my first post to this group. My mother has had Lupus for the past three years and it is simply getting worse. She is currently on both Plaquenil and Celebrex. In the past year she has had localised steroid injections to her shoulders, knees and feet. However the effects of these only lasts a couple of months. Currently her hands and especially her feet are VERY swollen and painful and it is difficuly for her to hold things and even walk a few steps. Has anyone got any suggestions for this swelling? Someone has suggested soaking in hot bath everyday??? Also I was reading on the web about IV Cytoxan and more recently Stem Cell treatment. Has anyone had experience with either of these. I would like to hear from anyone who has any tips on reducing the pain and swelling. I wish you all good health. Thanks Amar Gakhal Wolvehampton England Email: a…@talk21.com
Response:
Celebrex is a sulfa-based medicine, many Lupies have troubles with it. Vioxx can also cause swelling and pain. She needs to ask her Rheumy if another med (Mobic or such) would be more help. "Amarpal Gakhal" <a…@talk21.com> wrote in message
news:uYlZ8.1135$E35.219@news-binary.blueyonder.co.uk… – Hide quoted text — Show quoted text -> Hi everyone, > This is my first post to this group. My mother has had Lupus for the past > three years and it is simply getting worse. She is currently on both > Plaquenil and Celebrex. In the past year she has had localised steroid > injections to her shoulders, knees and feet. However the effects of these > only lasts a couple of months. Currently her hands and especially her feet > are VERY swollen and painful and it is difficuly for her to hold things and > even walk a few steps. Has anyone got any suggestions for this swelling? > Someone has suggested soaking in hot bath everyday??? > Also I was reading on the web about IV Cytoxan and more recently Stem Cell > treatment. Has anyone had experience with either of these. > I would like to hear from anyone who has any tips on reducing the pain and > swelling. > I wish you all good health. > Thanks > Amar Gakhal > Wolvehampton > England > Email: a…@talk21.com
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