Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 I am currently faced with a real dilemma and don't know what to do. 2 days ago I started to get Bells Palsy again (6th time). I have paralysis around my mouth, numb teeth and tongue, trigeminal and ear pain, etc... in other words, another flare. My internist wants me to take 25 mg of prednisone for a few days to see if it settles down. This is the same dr that told me prednisone was killing me. I haven't taken her advice yet. I keep hoping my body and remicade will make it go away. So far, no luck. I don't know whether to take the prednisone, or what might happen if I don't. My full-blown flares are very serious. I am so confused. I know you aren't doctors and giving medical advice is not a good idea, but frankly, the doctors don't know what to do either. It's left up to me to take a chance - either way I lose. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 , I have frequent bouts of Bells,trigeminal neuralgia and ear pain. I have taken prednisone and other meds for it. It is something that I get on a frequent basis and I will take what they give me just to get through it. I wish you did not have it; I can commiserate. I don't think it would not hurt to try the prednisone. Terri G.>> I am currently faced with a real dilemma and don't know what to do. 2> days ago I started to get Bells Palsy again (6th time). I have> paralysis around my mouth, numb teeth and tongue, trigeminal and ear> pain, etc... in other words, another flare. My internist wants me to> take 25 mg of prednisone for a few days to see if it settles down.> This is the same dr that told me prednisone was killing me. I haven't> taken her advice yet. I keep hoping my body and remicade will make it> go away. So far, no luck. I don't know whether to take the prednisone,> or what might happen if I don't. My full-blown flares are very> serious. I am so confused. I know you aren't doctors and giving> medical advice is not a good idea, but frankly, the doctors don't know> what to do either. It's left up to me to take a chance - either way I> lose.> -> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Wendi What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen 800mg) ? Many times Bell's is from the inflammation of the cranial nerves. Other things that can cause it is herpes virus. Do you have a cold sore? Have you ever taken Aclivor? It's the one they give for the cold sores. Pred is usually the first line of defense, but I do believe you were having the hypertension and blood sugar issues due to it? The Remicade will help with the inflammation, but it will probably take a second or other anti-inflammatory to keep all the systems in sync. I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are anti-inflammatories. Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start at 500mg and work up to where it gives you a good case of diarrhea, then back down to where that side effect stops, and that is the dose your body needs. The MSM powder is also helpful for inflammation. Icepacks may help also-- to bring the inflammation down at the nerve spots --(Rosies icebra pack might work well for this). (For the newbies, Rose fills the cups with ice, then straps that puppy on her head, and there ya go-- it's scary, but it works) (Yes, we have pictures in the PICTURES!!) What I'm getting at here is that whatever you can do to take the inflammation down will help with the BP. When do you get the next infusion? Take care, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 When I had this problem about 15 years ago, They put me on trgretol which is given for seizures. Cured the pain etc. in three days. They then leaned me off the tegretol over about 5 months. Judy in PA > > I am currently faced with a real dilemma and don't know what to do. 2 > days ago I started to get Bells Palsy again (6th time). I have > paralysis around my mouth, numb teeth and tongue, trigeminal and ear > pain, etc... in other words, another flare. My internist wants me to > take 25 mg of prednisone for a few days to see if it settles down. > This is the same dr that told me prednisone was killing me. I haven't > taken her advice yet. I keep hoping my body and remicade will make it > go away. So far, no luck. I don't know whether to take the prednisone, > or what might happen if I don't. My full-blown flares are very > serious. I am so confused. I know you aren't doctors and giving > medical advice is not a good idea, but frankly, the doctors don't know > what to do either. It's left up to me to take a chance - either way I > lose. > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Tracie, I am glad you are here; I forget about the natural stuff and the intivirals. I did try the antivirals because my bp and trigeminal neuralgia came after a case of shingles on my face. They don't do me any good so I just forget. I also use ice on my face to reduce the inflammation but I found a hot/cold pack at Walmart for about 10 dollars. It has a strap so I can strap it to body parts and it is a lot less embarrasing than Rose's bra pack (sorry Rose). I do use heat sometimes when I just need soothing but I try not to that often because of the inflammation. Thanks for being so knowledgeable and keeping us straight. Terri G. What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen 800mg) ? I've had an ulcer. Can't really take anything. > Many times Bell's is from the inflammation of the cranial nerves. Other things that can cause it is herpes virus. Do you have a cold sore? Have you ever taken Aclivor? It's the one they give for the cold sores. They know it is inflammation of the cranial nerves they think caused by an autoimmune reaction (they suspect sarcoidosis). Prednisone has been the only thing that stops it in it's tracks, and it works FAST - 3 hours! I am currently on 11 mg every other day. They want to up it to 25-40 mg for a few days. But it has caused the high blood pressure, etc... > The Remicade will help with the inflammation, but it will probably take a second or other anti-inflammatory to keep all the systems in sync. I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are anti-inflammatories. > Can you tolerate Vitamin C? NO - lot's of stomach issues. > The MSM powder is also helpful for inflammation. What is MSM powder? > Icepacks may help also-- to bring the inflammation down at the nerve spots They suspect the problem is in my brain stem. How does one ice pack that? > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? Just had one on Friday. It's one of the reasons I am waiting to take more prednisone. I'm hoping it will kick in and do the work. > Thanks Tracie. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 , taking Prednisone for 7-10 days for Bell's palsy, poison ivy, etc., does not carry the same risks for most people as the long-term dosing, especially the higher doses up to 80mg/day. I would also recommend taking a short course Acyclivir, as research has shown that the herpes virus is involved in a large number of Bell's palsies. I took Pred & Acyclivir with my first episode, which resolved quickly & totally. A year and half later with the second one, I just took the Pred & it was a slower & incomplete recovery, requiring electrical muscle stimulation by a speech pathologist & lots of weird facial exercises. The doctors may tell you that it's too late--you need to start the meds right away, but I think that even taking them later is worth a try. 80% resolve on their own, but we know how easy it is to be the 20% left with a permanent problem. BTW, after the second episode had begun to resolve some, I got hit with trigeminal neuralgia, so look out. Sarc has an affinity for all the cranial nerves. Good luck, kiddo. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: really need adviceDate: Sat, 19 May 2007 23:09:19 -0000 I am currently faced with a real dilemma and don't know what to do. 2days ago I started to get Bells Palsy again (6th time). I haveparalysis around my mouth, numb teeth and tongue, trigeminal and earpain, etc... in other words, another flare. My internist wants me totake 25 mg of prednisone for a few days to see if it settles down.This is the same dr that told me prednisone was killing me. I haven'ttaken her advice yet. I keep hoping my body and remicade will make itgo away. So far, no luck. I don't know whether to take the prednisone,or what might happen if I don't. My full-blown flares are veryserious. I am so confused. I know you aren't doctors and givingmedical advice is not a good idea, but frankly, the doctors don't knowwhat to do either. It's left up to me to take a chance - either way Ilose.- Make every IM count. Download Messenger and join the i’m Initiative now. It’s free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Terri, I'm also famous for my jockey-short sport bras. I learned this one from an old biker chick. You just cut the crotch out of a pair of jockeys (I prefer new ones myself), stick your head through the crotch hole & your arms through the leg holes, with the fly in the front (you can put money in there; I once got out some cash for a tip & my two granddaughters nearly fell out of their chairs!). Use the waist size that matches your bra size. I wear them all the time; they are really comfortable & cheap. You can even tie-dye them! Someday I'll tell you a really hysterical story about my ex & my tie-dye bra. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: really need adviceDate: Sun, 20 May 2007 13:16:46 -0000 Tracie,I am glad you are here; I forget about the natural stuff and theintivirals. I did try the antivirals because my bp and trigeminalneuralgia came after a case of shingles on my face. They don't do meany good so I just forget.I also use ice on my face to reduce the inflammation but I found ahot/cold pack at Walmart for about 10 dollars. It has a strap so I canstrap it to body parts and it is a lot less embarrasing than Rose's brapack (sorry Rose). I do use heat sometimes when I just need soothingbut I try not to that often because of the inflammation.Thanks for being so knowledgeable and keeping us straight.Terri G. What other anti-inflammatories are you on? Can you take Motrin(Ibuprofen> 800mg) ?> Many times Bell's is from the inflammation of the cranial nerves.Other> things that can cause it is herpes virus. Do you have a cold sore?Have you ever> taken Aclivor? It's the one they give for the cold sores.> Pred is usually the first line of defense, but I do believe you werehaving> the hypertension and blood sugar issues due to it? The Remicade willhelp with> the inflammation, but it will probably take a second or other> anti-inflammatory to keep all the systems in sync.> Icepacks may help also-- to bring the inflammation down at the nervespots> --(Rosies icebra pack might work well for this).> (For the newbies, Rose fills the cups with ice, then straps that puppyon her> head, and there ya go-- it's scary, but it works) (Yes, we havepictures in> the PICTURES!!)> What I'm getting at here is that whatever you can do to take theinflammation> down will help with the BP.> When do you get the next infusion?>> Take care,> Tracie> NS Co-owner/moderator>>>>> **************************************> See what's free at http://www.aol.com.> PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Rose, I can't even imagine this! And I'm afraid to ask for a picture! ...lol. You keep surprising me day to day....lol. hugs S.Rose wrote: Terri, I'm also famous for my jockey-short sport bras. I learned this one from an old biker chick. You just cut the crotch out of a pair of jockeys (I prefer new ones myself), stick your head through the crotch hole & your arms through the leg holes, with the fly in the front (you can put money in there; I once got out some cash for a tip & my two granddaughters nearly fell out of their chairs!). Use the waist size that matches your bra size. I wear them all the time; they are really comfortable & cheap. You can even tie-dye them! Someday I'll tell you a really hysterical story about my ex & my tie-dye bra. Ramblin' Rose Moderator From: "mosaicgirl1" <mosaicgirl1 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: really need adviceDate: Sun, 20 May 2007 13:16:46 -0000 Tracie,I am glad you are here; I forget about the natural stuff and theintivirals. I did try the antivirals because my bp and trigeminalneuralgia came after a case of shingles on my face. They don't do meany good so I just forget.I also use ice on my face to reduce the inflammation but I found ahot/cold pack at Walmart for about 10 dollars. It has a strap so I canstrap it to body parts and it is a lot less embarrasing than Rose's brapack (sorry Rose). I do use heat sometimes when I just need soothingbut I try not to that often because of the inflammation.Thanks for being so knowledgeable and keeping us straight.Terri G. What other anti-inflammatories are you on? Can you take Motrin(Ibuprofen> 800mg) ?> Many times Bell's is from the inflammation of the cranial nerves.Other> things that can cause it is herpes virus. Do you have a cold sore?Have you ever> taken Aclivor? It's the one they give for the cold sores.> Pred is usually the first line of defense, but I do believe you werehaving> the hypertension and blood sugar issues due to it? The Remicade willhelp with> the inflammation, but it will probably take a second or other> anti-inflammatory to keep all the systems in sync.> Icepacks may help also-- to bring the inflammation down at the nervespots> --(Rosies icebra pack might work well for this).> (For the newbies, Rose fills the cups with ice, then straps that puppyon her> head, and there ya go-- it's scary, but it works) (Yes, we havepictures in> the PICTURES!!)> What I'm getting at here is that whatever you can do to take theinflammation> down will help with the BP.> When do you get the next infusion?>> Take care,> Tracie> NS Co-owner/moderator>>>>> **************************************> See what's free at http://www.aol.com.> PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Rose, What a great idea. That way I won't have that pain in the ribs as much huh? Write me on my email about the tie dyed story. It is mosaicgirl1@.... Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Thanks for being so knowledgeable and keeping us straight. You are welcome!************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 lot's of stomach issues. I found that Carafate and Aciphex has helped tremendously with this issue. > The MSM powder is also helpful for inflammation. What is MSM powder? http://www.puremsm.com/details.htm This is a natural mineral that should be in our soils and food. It has been engineered out, and so we are totally deficient. It's is water soluble, no side effects, no allergic reactions, no drug interactions. I absolutely swear by it for that inside the bone pain, and the neuropathy. > Icepacks may help also-- to bring the inflammation down at the nerve spots They suspect the problem is in my brain stem. How does one ice pack that? Get an icepack that is oversized, or use a package of frozen peas-- place it on the back of your neck, and let it cool that area for 15-20 minutes. Ice truly sucks the inflammation out of an area, and when you start to warm up, you get increased blood flow to that area, which brings in more oxygen to the area, and helps with the healing. > What I'm getting at here is that whatever you can do to take the inflammation down will help with the BP. Bell's Palsy happens when the cranial nerves on both side of the 7th cranial nerve become inflammed. - So if you can get the inflammation down- which is why they put you on the higher dose pred-- will help. So will the simple ice packs. It is important to watch that your eyes don't get even more dry-- as many times it makes the eyelid unable to close. IF you go into this problem, the ophthalmologist can actually stitch the eyelid closed (except for a tiny spot in the middle) and with the use of artificial tears and gels-- you can keep the cornea moist, and still see. But yeah, this disease is a systemic inflammatory disease. This is why Rheumi's are so good-- that is their speciality. Where ever the inflammation is, you've got to get it under control. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Has anyone ever tried Cellcept? I have been on that almost a year now and it has been a lifesaver for me! Also, does anyone know of any support groups or Sarcoid Chapters in Upstate NY? Thanks! > > Wendi > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are > anti-inflammatories. > Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start > at 500mg and work up to where it gives you a good case of diarrhea, then back > down to where that side effect stops, and that is the dose your body needs. > The MSM powder is also helpful for inflammation. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 I have been on cellcept but recently went off b/c was bitten by a cat. I will go back on it soon as my antibx are finished. It has been great for me too!turtlesnap123 wrote: Has anyone ever tried Cellcept? I have been on that almost a year now and it has been a lifesaver for me! Also, does anyone know of any support groups or Sarcoid Chapters in Upstate NY? Thanks! > > Wendi > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are > anti-inflammatories. > Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start > at 500mg and work up to where it gives you a good case of diarrhea, then back > down to where that side effect stops, and that is the dose your body needs. > The MSM powder is also helpful for inflammation. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Can I ask where you are? I have not heard of a lot of people on Cellcept. I have heard so many great things about it, and so many docs in my area use it. It has been wonderful for me and I am glad to hear it has for you too!!Mac Tosh wrote: I have been on cellcept but recently went off b/c was bitten by a cat. I will go back on it soon as my antibx are finished. It has been great for me too!turtlesnap123 <turtlesnap123 (AT) yahoo (DOT) com> wrote: Has anyone ever tried Cellcept? I have been on that almost a year now and it has been a lifesaver for me! Also, does anyone know of any support groups or Sarcoid Chapters in Upstate NY? Thanks! > > Wendi > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are > anti-inflammatories. > Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start > at 500mg and work up to where it gives you a good case of diarrhea, then back > down to where that side effect stops, and that is the dose your body needs. > The MSM powder is also helpful for inflammation. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 I live in Florida but my s Hopkins Sarcoidosis doctor in Baltimore prescribed it. I have had no problem with it but when there's a potential serious infection (cat bite) it has to be stopped for a while. Cellcept has been used on Lupus pts too. It's good to hear from someone else who's on it also! Everdyke wrote: Can I ask where you are? I have not heard of a lot of people on Cellcept. I have heard so many great things about it, and so many docs in my area use it. It has been wonderful for me and I am glad to hear it has for you too!!Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: I have been on cellcept but recently went off b/c was bitten by a cat. I will go back on it soon as my antibx are finished. It has been great for me too!turtlesnap123 <turtlesnap123 (AT) yahoo (DOT) com> wrote: Has anyone ever tried Cellcept? I have been on that almost a year now and it has been a lifesaver for me! Also, does anyone know of any support groups or Sarcoid Chapters in Upstate NY? Thanks! > > Wendi > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are > anti-inflammatories. > Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start > at 500mg and work up to where it gives you a good case of diarrhea, then back > down to where that side effect stops, and that is the dose your body needs. > The MSM powder is also helpful for inflammation. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. Pinpoint customers who are looking for what you sell. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Yes, I know a few people with Lupus who are on Cellcept. I also know that they prescribe it for blood disorders as well. I wish more people knew about it, it is SO MUCH better for you than some of the other immunosuppressants out there!!Mac Tosh wrote: I live in Florida but my s Hopkins Sarcoidosis doctor in Baltimore prescribed it. I have had no problem with it but when there's a potential serious infection (cat bite) it has to be stopped for a while. Cellcept has been used on Lupus pts too. It's good to hear from someone else who's on it also! Everdyke <turtlesnap123 (AT) yahoo (DOT) com> wrote: Can I ask where you are? I have not heard of a lot of people on Cellcept. I have heard so many great things about it, and so many docs in my area use it. It has been wonderful for me and I am glad to hear it has for you too!!Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: I have been on cellcept but recently went off b/c was bitten by a cat. I will go back on it soon as my antibx are finished. It has been great for me too!turtlesnap123 <turtlesnap123 (AT) yahoo (DOT) com> wrote: Has anyone ever tried Cellcept? I have been on that almost a year now and it has been a lifesaver for me! Also, does anyone know of any support groups or Sarcoid Chapters in Upstate NY? Thanks! > > Wendi > What other anti-inflammatories are you on? Can you take Motrin (Ibuprofen > 800mg) ? > Many times Bell's is from the inflammation of the cranial nerves. Other > things that can cause it is herpes virus. Do you have a cold sore? Have you ever > taken Aclivor? It's the one they give for the cold sores. > Pred is usually the first line of defense, but I do believe you were having > the hypertension and blood sugar issues due to it? The Remicade will help with > the inflammation, but it will probably take a second or other > anti-inflammatory to keep all the systems in sync. > I take Motrin 800mg 3xday, Plaquenil Methotrexate and Remicade. All are > anti-inflammatories. > Can you tolerate Vitamin C? That is a natural anti-inflammatory. You start > at 500mg and work up to where it gives you a good case of diarrhea, then back > down to where that side effect stops, and that is the dose your body needs. > The MSM powder is also helpful for inflammation. > Icepacks may help also-- to bring the inflammation down at the nerve spots > --(Rosies icebra pack might work well for this). > (For the newbies, Rose fills the cups with ice, then straps that puppy on her > head, and there ya go-- it's scary, but it works) (Yes, we have pictures in > the PICTURES!!) > What I'm getting at here is that whatever you can do to take the inflammation > down will help with the BP. > When do you get the next infusion? > > Take care, > Tracie > NS Co-owner/moderator > > > > > ************************************** > See what's free at http://www.aol.com. > Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. Pinpoint customers who are looking for what you sell. Need a vacation? Get great deals to amazing places on Yahoo! Travel. Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Rose You out did the ice bra! You always can crack me up! Thanksgrannylunatic@... Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Cellcept is the other one my neuro suggested after the Cytoxan. He said it was pretty expensive & I don't know if medicare covers it but I am glad to hear it's helping you.grannylunatic@... Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 ,Hopefully it will be covered for you...if it is, try it out! I truly think it has been the best thing for me! Plus, it helps with weight! I can use that! wrote: Cellcept is the other one my neuro suggested after the Cytoxan. He said it was pretty expensive & I don't know if medicare covers it but I am glad to hear it's helping you.grannylunatic (AT) yahoo (DOT) com Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 My neuro won't put me on anything until I am released from Dr B & the Cytoxan so I have a few more months to wait.grannylunatic@... Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
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