Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Hi Carol (Esther's mom), First of all I think it is sweet of you to research things for your daughter and to come here to the web site on her behalf. It caught my eye because I too react badly to the RA meds, even the tylenol I am taking right now is causing a reaction. The reactions to the RA meds aren't mild symptoms either and usually require stopping the medication. I liked the Arava but it didn't like me back. Same with the other meds. Liver enzymes are going up and up or staying elevated but never down. So no MTX for me. It can be extremely frustrating when the meds used to treat RA make you sicker than the RA. I don't think that's the norm because it is difficult to find someone to talk to who is going through the same things with their meds. My prayers to Esther and to you that this new condition clears up soon and that she finds a therapy that will work without the serious side effects. I am still looking after almost 11 years. However, I still have hope that it's out there somewhere. I just have to find the right doctor with the right combination therapy for me. take care. peace and healing to you. Ebony --- In , " Ruf-Caimi " <ruf-caimi@...> wrote: > > Carol, > I am so sorry to read about all the problems Esther is having. I have had > pancreatitis and the pain is terrible. Even if it is a mild case I am sure > she is in awful pain. I know I had many attacks. I hope they can find out > what is wrong and help her. I have had problems with so many of the Ra > drugs, that it is frustrating. I will be praying for Esther and hoping all > will be well soon. > Lynn (MeMom) > Re: [ ] arava > > > > Hi a, , June and all who responded. I think of you all so often. > > > > Esther has a mild case of pancreatitis... so they say.... but she says > > the pain is great. She is scheduled to have a colonscopy and at same > > time they are going to scope and see if she has any ulcers. She has been > > on so much medication since the age of eight....now she is 36. I am > > hoping this is a side effect of the Arava because if so, the Gastro > > doctor said once it is out of her body....(.could take up to 6 weeks), > > then her symptoms will go away. He too said that Lupus patients > > develope pancreatitis also. She still has to have another blood test > > for the Lupus. Her Rhuemmy has her on this > > powder....Cholestyramine...mixed with water 3 times a day. He said this > > will get the Arava out faster. ????? > > > > Actually of all the medications she has ever taken only prednisone worked. > > Also, aspirin....which has a bad rap. She was on aspirin when her > > Still's Disease first started and it worked great until she had a major > > flare around the age of nine. After that, she has never been put back on > > it....but I think it worked a lot better than these others. > > > > She was on Kineret for about 8 months. She kept getting bladder > > infections and then finally last Nov. she had both a urine and a blood > > infection. Was in hospital for 3 weeks with that.....came home on IV > > antibiodics and then in Dec. developed a totally different bacteria > > urine and blood infection. was back in for another week. I told her > > Rheummy that I thought Kineret was the blame. Then he started her on > > this Arava. He had also tried methotrexdate (spg.??) and that made her > > blood go wacky. I really don't think she can take these stronger > > arthritis drugs. > > > > Didn't mean to write a book, LOL > > Gentle hugs to all of you, > > Carol aka Esther's Mom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Ebony, Thank you for your prayers....we covet them. Yes, it is discouraging when the drug effects are almost as bad as the disease. I will pray that you do find your miracle drug that will work well with you. Nice meeting you. Carol/aka Esther's Mom Ebony wrote: > Hi Carol (Esther's mom), > > First of all I think it is sweet of you to research things for your > daughter and to come here to the web site on her behalf. > > It caught my eye because I too react badly to the RA meds, even the > tylenol I am taking right now is causing a reaction. The reactions to > the RA meds aren't mild symptoms either and usually require stopping > the medication. I liked the Arava but it didn't like me back. Same > with the other meds. Liver enzymes are going up and up or staying > elevated but never down. So no MTX for me. > > It can be extremely frustrating when the meds used to treat RA make > you sicker than the RA. I don't think that's the norm because it is > difficult to find someone to talk to who is going through the same > things with their meds. > > My prayers to Esther and to you that this new condition clears up > soon and that she finds a therapy that will work without the serious > side effects. I am still looking after almost 11 years. However, I > still have hope that it's out there somewhere. I just have to find > the right doctor with the right combination therapy for me. > > take care. > > peace and healing to you. > Ebony > > > > > > > Carol, > > I am so sorry to read about all the problems Esther is having. I > have had > > pancreatitis and the pain is terrible. Even if it is a mild case I > am sure > > she is in awful pain. I know I had many attacks. I hope they can > find out > > what is wrong and help her. I have had problems with so many of > the Ra > > drugs, that it is frustrating. I will be praying for Esther and > hoping all > > will be well soon. > > Lynn (MeMom) > > Re: [ ] arava > > > > > > > Hi a, , June and all who responded. I think of you all so > often. > > > > > > Esther has a mild case of pancreatitis... so they say.... but she > says > > > the pain is great. She is scheduled to have a colonscopy and at > same > > > time they are going to scope and see if she has any ulcers. She > has been > > > on so much medication since the age of eight....now she is 36. I > am > > > hoping this is a side effect of the Arava because if so, the > Gastro > > > doctor said once it is out of her body....(.could take up to 6 > weeks), > > > then her symptoms will go away. He too said that Lupus patients > > > develope pancreatitis also. She still has to have another blood > test > > > for the Lupus. Her Rhuemmy has her on this > > > powder....Cholestyramine...mixed with water 3 times a day. He > said this > > > will get the Arava out faster. ????? > > > > > > Actually of all the medications she has ever taken only > prednisone worked. > > > Also, aspirin....which has a bad rap. She was on aspirin when her > > > Still's Disease first started and it worked great until she had a > major > > > flare around the age of nine. After that, she has never been put > back on > > > it....but I think it worked a lot better than these others. > > > > > > She was on Kineret for about 8 months. She kept getting bladder > > > infections and then finally last Nov. she had both a urine and a > blood > > > infection. Was in hospital for 3 weeks with that.....came home on > IV > > > antibiodics and then in Dec. developed a totally different > bacteria > > > urine and blood infection. was back in for another week. I told > her > > > Rheummy that I thought Kineret was the blame. Then he started her > on > > > this Arava. He had also tried methotrexdate (spg.??) and that > made her > > > blood go wacky. I really don't think she can take these stronger > > > arthritis drugs. > > > > > > Didn't mean to write a book, LOL > > > Gentle hugs to all of you, > > > Carol aka Esther's Mom > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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