Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 , I took plaquenil for about 1.5 years and went into remission. I came out of remission about 4 months ago and am on it again but now with bextra as well. I have not had any hair loss and I didn't even know that it was a side effect. The only one I worry about is loss of vision..so I have to go to a Retina specialist every 6 months to check my field of vision. If there is any change in vision I have to notify him immediately. So far so good. It takes 6 weeks to start working and I am still seeing if it is helping..still not sure...been on it now for about 7 weeks. Going back to the rheumy on June 17 to see what he says. I also get my blood taken every few months to make sure the meds aren't affecting my liver. I'm hoping that since it helped me when I was 15-17 that it will help me now that I am 21. Hope it helps you too. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Im hoping it will work. I was on sulfasalasine..but it made me throw up every day so I'm off it now. Hopefully this will be my key to remission.. if not I guess we will see what's next. JRA poly 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hey Robin, Currently I am on 200 mg Celebrex (twice daily), 10 mg Zyrtect (once daily), 30 mg prevacid (twice daily)..and was on 1000 mg Sulfasalsine twice a day. The sulfasalasine was making me sick though. I've tried just about every NSAID there is and none of them worked. After we found out the Sulfa needed to go because it was what was causing me to get sick.. my mom asked my rheumi about Enbrel.. and she said she wanted to try this and if this didn't work some others first. I have JRA in both hips, knees, ankles, elbows, shoulders, wrists..and every one of my fingers and toes. I go to a pediatric rheumitologist at Stanford Childrens Hospital. But since it is a learning hospital I am seen by the fellow first and then by the cheif of pediatric rheumatology. I guess the fellow is not very agressive with the treatment I am really not sure. I asked her about the Enbrel and the MTX and they wont give either until we have tried all other options first.. the less toxic ones. I've heard such great things about Enbrel and how well it works for poly kids.. and I was really hoping that I would go on that first.. but I guess they want to try these ones first. I don't get it why not go with the good stuff first.. so many poly kids get a good reaction to this.. but now I'm going to have to try all these other DMARD's before they try me on one that they have seen work with kids. I guess they just want to try the ones that have been around longest first.. I dunno sometimes I just dont understand doctors.. But maybe this will work for me.. I hope so.. I'm tired of this JRA stuff. I want this to be gone.. I wanted this to be gone before I graduated.. but its still here.. Oh well.. Just living day by day I guess. Thanks for the concern though.. I appreciate knowing that other people on this board know what I'm going through..and care (poly JRA 18) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 n, age 14 systemic, has been on plaquenil for about 3 and 1/2 years. She hasn't had any side effects that we have seen, but you have to be seen by an opthamologist every six months. Very rare, but it can cause eye problems that are reversible once you go off of the drug. It is the least effective of the dmard's according to what I have read, but also the least toxic of the dmard's. I think it is about 20-30% effective. If you are one of the 20-30% then that is great. It can take a couple of months to start working. (n, 14, systemic) I got a new med So I got a call from my doctor. Actually not my doctor but my fellow whos learning from my doctor. They are putting me on plaquenil (sp). Is anyone on this. Anything good or bad things to think about. One of the side effects is hair loss is that true.. The MRI came out clear which i'm glad about because it was a little nerve wrecking.. Feedback would be great.. poly JRA 18 To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 , What medications are you taking right now? - only the plaquenil? How long have you had Poly JRA and what joints are affected? Did you ask your doctor about getting you on Enbrel or even Mtx? If so, why didn't he want to put you on one of them and why did he prefer plaquenil instead? Are you seeing a ped. rheum. or a regular adult rheum.? Sorry for all of the questions, but I have always thought that for most poly jra cases, mtx is the first med that is tried. If it doesn't work, most insurance companies will then allow the use of Enbrel. Generally, enbrel starts working almost immediately if it is going to work for you. I mean, if it is going to help you, you will start to notice the effects in a fairly short time - like by the 2nd week, atleast (if not sooner). I am not saying you will reach the optimal effect, but you will definitely start to see that it is working. It just seems like doctors are letting their patients SUFFER TOO LONG before trying the drugs that have the best chance of helping their patients. They also put them on drugs that have worse side effects. Why not just be aggressive and try mtx right away - then enbrel if that doesn't work? Why are they letting you suffer so? I just don't get it. I would understand if you had already tried mtx and enbrel and it didn't work. But from your previous emails, I was under the impression that you hadn't tried them. Perhaps I am wrong. Sorry again. I know that I know absolutely nothing about your situation - and I'm making all of the assumptions. I have just seen/heard of too many people trying less effective meds that cause more problems to their systems than standard treatments like mtx or enbrel. (for people with poly jra - not systemic or other illnesses). They end up suffering too long and needlessly. I am wondering why do doctors do this? There must be a reason that I don't understand. Perhaps you can educate me. I truly hope that plaquenil is the answer for you. I hope this med works well for you. Let us know. Robin ---- Original Message ----- From: superstahlisa@... Sent: Tuesday, June 03, 2003 9:49 PM Subject: Re: I got a new med Im hoping it will work. I was on sulfasalasine..but it made me throw up every day so I'm off it now. Hopefully this will be my key to remission.. if not I guess we will see what's next. JRA poly 18 To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 , I URGE you and your mom to get a second opinion. PLEASE. My son had inflammation in all of his fingers and toes, ankles, knees, elbows and wrists. We have been to two ped. rheumatologists. Both said that he needed to be treated aggressively. Your hips and shoulders are affected as well. You are suffering TOO much while they drag their feet trying meds that are meant for people with less severe cases of jra. It is almost like they are experimenting on you. I don't mean to make you feel bad, I just REALLY think you should talk to another doctor at another hospital. I don't think that you are going to find them sharing the same opinion as your doctor. The longer they take to get you into remission the bigger the risk that your joints are going to have permenant damage. Also, I find your doctor's reference to using "less toxic" drugs very interesting. Enbrel is proving to be a very safe drug. The most common side effect is temporary itching at the injection site. Most of the "dangerous" side effects are rare and usually occur in people who already have serious medical conditions like diabetes etc. If you must continually get blood tests to make sure that your liver or kidneys are functioning properly, then you should know that the drugs that your doctor is giving you are already toxic to your system. I am not going to talk about this anymore - because I am getting too preachy. It's just that I saw my son suffer - I hate to think of others suffering needlessly for long periods of time. Please get a second opinion. Good luck to you. Robin Re: I got a new med Hey Robin, Currently I am on 200 mg Celebrex (twice daily), 10 mg Zyrtect (once daily), 30 mg prevacid (twice daily)..and was on 1000 mg Sulfasalsine twice a day. The sulfasalasine was making me sick though. I've tried just about every NSAID there is and none of them worked. After we found out the Sulfa needed to go because it was what was causing me to get sick.. my mom asked my rheumi about Enbrel.. and she said she wanted to try this and if this didn't work some others first. I have JRA in both hips, knees, ankles, elbows, shoulders, wrists..and every one of my fingers and toes. I go to a pediatric rheumitologist at Stanford Childrens Hospital. But since it is a learning hospital I am seen by the fellow first and then by the cheif of pediatric rheumatology. I guess the fellow is not very agressive with the treatment I am really not sure. I asked her about the Enbrel and the MTX and they wont give either until we have tried all other options first.. the less toxic ones. I've heard such great things about Enbrel and how well it works for poly kids.. and I was really hoping that I would go on that first.. but I guess they want to try these ones first. I don't get it why not go with the good stuff first.. so many poly kids get a good reaction to this.. but now I'm going to have to try all these other DMARD's before they try me on one that they have seen work with kids. I guess they just want to try the ones that have been around longest first.. I dunno sometimes I just dont understand doctors.. But maybe this will work for me.. I hope so.. I'm tired of this JRA stuff. I want this to be gone.. I wanted this to be gone before I graduated.. but its still here.. Oh well.. Just living day by day I guess. Thanks for the concern though.. I appreciate knowing that other people on this board know what I'm going through..and care (poly JRA 18) To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi , They added Plaquenil to my sons MTX about a year ago.They told me not to expect much and good thing I didn't.He didn't have any responce at all to it and was taken off 1 month after starting Enbrel.They called it a desperation drug.Some people really do get a good responce to it but it's usualy added to something else.I just can't believe in todays day and age they are not treating your JRA more aggressively.MTX is the standard treatment and if it fails then mayby add Plaquenil or go on to a bialogical.Most insurance companies want to see atleast two DMARDS tried before covering them though.You need to get an appointment with the opthomoligist within 3 months of starting Plaquenil so they can access you at baseline then every 6 months to check for Plaquenil toxicity.Sorry I couldn't give you a wonderful success story.We were also told it would take at least 3 months to see results and possibly up to 6 months.s labs did improve slightly but nothing for his joints.Hopefully you will be one of the few that is a good responder. Hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi , ditto to what Robbin said .I just didn't have the nerve to just come out and tell you to get a second opinion.Your disease is much to severe and active for Plaquenil alone.They are going by the old outdated DMARD pyramid which they used to use with very bad results and permanant joint damage.As toxic as they claim MTX is,most people have no ill effects and those simple blood tests can catch things long before anything happens.I suggest you sit down with yoir mom and have a heart to heart talk to her,I bet she will listen to you.You need and desrve better care and as an adult you have the right to seek it out.Unfortunately in some places rheumies can be hard to find.Good luck! Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 See what I don't understand is my GI doctor said it was the sulfa in sulfa salsasine that was making me sick.. But this stuffs other main ingredient is sulfate.. Is that the same thing? SO my mom is going to call today and see. I don't get it either.. I mean considering how long it takes to begin to work.. even if it does its not going to be for three months.. basically I get no summer again. I think I am going to get a second opinion. I dont honestly feel that it is my doctors doing..but rather the fellow.. SO my mom is going to request that I get to talk to my doctor today rather the a fellow (a fellow is a doctor who is in their first year of a speciality.. so basically all she has to go by is what she read.. she doesnt have any experience.) my mom said she refuses to pick up the med that this is not ok..and we will go into a clinical trial if we have to. I honestly was kinda like why are they putting me on this.. this isnt a good medicine.. but I wanted to see what everyone had to say. it makes no sense to me. I'm just annoyed by this and I think it might have to do with the fact my sed is so low. Maybe they would treat it more agressivly if that were the case. But it doesnt change the fact that my fingers are no longer able to straighten out.. my knees are twice its size.. I'm just frustrated.. I want them to treat this agressivly.. honestly I would rather be safe then sorry. Be overly cautious then be sitting here contimplating if I can go to my senior picnic whether or not I will feel well enough for it.. This is just no fun.. I want it to go away Poly JRA 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi , I couldn't help myself to share. I'm totally with what Robin is saying here. I think you're suffering way too much. My daughter (8)was diagnosed JRA in March 2002. We were lucky enough to go directly to a great team of rheumatologists since her ped had a daughter about her age who suffered from JRA so she was able to recognize the symptoms right away, and knew from experience (not only as a doctor) that the key in sometimes outgrowing this disease is agressive and early treatment. 's fingers were totally crooked and very painful. We shortly found out that not only she had her fingers involved, but her wrists, ankles, knees, toes and shoulders. They put her on Naprosyn right away and waited for the three month period to make sure that there was nothing viral and that the symptoms were there to stay. After this period she was put on Mtx injectable (10 mg.) and has been on it since then. I can't tell you how thankful I'm today of having followed the rheumies advice. Before having her take mex, of course we made big research and talked it over with the rheumy and doctors. We then learned that it has been around long time and that they monitor her blood every eight weeks to make sure her liver is doing okay. The adjustment period was tough, a lot of fatigue, feeling sick, but as soon as the body got used to it she had no problems at all. Looking back I have to tell you that I feel lucky that we risked it and trusted and worked fast to stop her symptoms. I don't know if they'll eventually come back, but I do know that deserves to live a pain free, normal life and enjoy everything the regular kid does, that is what made me back them up. So, after rambling a while here, I have to urge you to ask for a second opinion, you deserve to live a regular-pain free life. Your MDs there seem to be following the procedure by the book, and your health is much more important than that. If mtx hadn't worked for , I had pushed it for Embrel, definitely. I hate to listen that you are suffering, so forgive my intrussion, but I wanted to share my experience, it has been a blessing to us how the circumstances have developed. has been tapered from Naprosyn now since late March, and everything seems to be working fine, so eventually at the end of the summer, we could be tapering her mtx as well. Good luck and thanks for reading. Best for you, (8) poly > Hey Robin, > Currently I am on 200 mg Celebrex (twice daily), 10 mg Zyrtect (once > daily), 30 mg prevacid (twice daily)..and was on 1000 mg Sulfasalsine twice a > day. The sulfasalasine was making me sick though. I've tried just about every > NSAID there is and none of them worked. After we found out the Sulfa needed > to go because it was what was causing me to get sick.. my mom asked my rheumi > about Enbrel.. and she said she wanted to try this and if this didn't work some > others first. I have JRA in both hips, knees, ankles, elbows, shoulders, > wrists..and every one of my fingers and toes. I go to a pediatric rheumitologist > at Stanford Childrens Hospital. But since it is a learning hospital I am > seen by the fellow first and then by the cheif of pediatric rheumatology. I > guess the fellow is not very agressive with the treatment I am really not sure. > I asked her about the Enbrel and the MTX and they wont give either until we > have tried all other options first.. the less toxic ones. I've heard such great > things about Enbrel and how well it works for poly kids.. and I was really > hoping that I would go on that first.. but I guess they want to try these ones > first. I don't get it why not go with the good stuff first.. so many poly > kids get a good reaction to this.. but now I'm going to have to try all these > other DMARD's before they try me on one that they have seen work with kids. I > guess they just want to try the ones that have been around longest first.. I > dunno sometimes I just dont understand doctors.. But maybe this will work for > me.. I hope so.. I'm tired of this JRA stuff. I want this to be gone.. I wanted > this to be gone before I graduated.. but its still here.. Oh well.. Just > living day by day I guess. Thanks for the concern though.. I appreciate knowing > that other people on this board know what I'm going through..and care > > (poly JRA 18) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 I was on prednisone for two months.. It helped quite a bit..so I tapered down... and my symptoms started back up. I think it was the pred that was helping.. but I really do not want to be on it again. I was not a very nice person on it, very irritable..and I was sleeping so much because my body was so tired from the flare up. Poly JRA 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Hi I can understand your concern. I think it is hard to choose drugs and everyone knows that the long term side effects of Enbrel and Remicade is yet to come. If there are other ways to do it than just take drugs I go for that but I think it's important to have some quality to the life so I understand patients that chose the drugs and hope for the best. We chose dealing with what triggers the body to react with flares and for us that works better than the drugs did. I read a resurch from ped.rhemu. from paris that suggested that enbrel and remicade should not be given to children because sooner or later the drugs would loose it's effect and the patient be worse of than before. But if you are in bad pain already you probably don't have to much to loose on trying. There is a natural pill call Moducare that lowers the interlukin-6 and TNF-alfa too that we give our daughter and works very well. Take care Mum to Jackie 6 syst.poly,. >From: "DIGIACOMO ROBIN" >Reply- > >Subject: Re: I got a new med >Date: Tue, 3 Jun 2003 23:48:22 -0700 > >, >I URGE you and your mom to get a second opinion. PLEASE. My son had inflammation in all of his fingers and toes, ankles, knees, elbows and wrists. We have been to two ped. rheumatologists. Both said that he needed to be treated aggressively. Your hips and shoulders are affected as well. You are suffering TOO much while they drag their feet trying meds that are meant for people with less severe cases of jra. It is almost like they are experimenting on you. I don't mean to make you feel bad, I just REALLY think you should talk to another doctor at another hospital. I don't think that you are going to find them sharing the same opinion as your doctor. The longer they take to get you into remission the bigger the risk that your joints are going to have permenant damage. Also, I find your doctor's reference to using "less toxic" drugs very interesting. Enbrel is proving to be a very safe drug. The most common side effect is temporary itching at the injection site. Most of the "dangerous" side effects are rare and usually occur in people who already have serious medical conditions like diabetes etc. If you must continually get blood tests to make sure that your liver or kidneys are functioning properly, then you should know that the drugs that your doctor is giving you are already toxic to your system. > >I am not going to talk about this anymore - because I am getting too preachy. It's just that I saw my son suffer - I hate to think of others suffering needlessly for long periods of time. Please get a second opinion. Good luck to you. > >Robin > > > > Re: I got a new med > >Hey Robin, > Currently I am on 200 mg Celebrex (twice daily), 10 mg Zyrtect (once daily), 30 mg prevacid (twice daily)..and was on 1000 mg Sulfasalsine twice a day. The sulfasalasine was making me sick though. I've tried just about every NSAID there is and none of them worked. After we found out the Sulfa needed to go because it was what was causing me to get sick.. my mom asked my rheumi about Enbrel.. and she said she wanted to try this and if this didn't work some others first. I have JRA in both hips, knees, ankles, elbows, shoulders, wrists..and every one of my fingers and toes. I go to a pediatric rheumitologist at Stanford Childrens Hospital. But since it is a learning hospital I am seen by the fellow first and then by the cheif of pediatric rheumatology. I guess the fellow is not very agressive with the treatment I am really not sure. I asked her about the Enbrel and the MTX and they wont give either until we have tried all other options first.. the less toxic ones. I've heard such great things about Enbrel and how well it works for poly kids.. and I was really hoping that I would go on that first.. but I guess they want to try these ones first. I don't get it why not go with the good stuff first.. so many poly kids get a good reaction to this.. but now I'm going to have to try all these other DMARD's before they try me on one that they have seen work with kids. I guess they just want to try the ones that have been around longest first.. I dunno sometimes I just dont understand doctors.. But maybe this will work for me.. I hope so.. I'm tired of this JRA stuff. I want this to be gone.. I wanted this to be gone before I graduated.. but its still here.. Oh well.. Just living day by day I guess. Thanks for the concern though.. I appreciate knowing that other people on this board know what I'm going through..and care > > (poly JRA 18) > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.