Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi , I too am a new member to this particular group. I just wanted to let you know that I was also teary eyed when we found out that our son need his DOC band. I was worried about how he would adjust and about all of the stares that we would get. My son has been wearing his helmet now going on four weeks. He has never once been bothered by it. It actually serves as his protection gear for when he falls. We are now more worried about we he will do once it is off. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi , I too am a new member to this particular group. I just wanted to let you know that I was also teary eyed when we found out that our son need his DOC band. I was worried about how he would adjust and about all of the stares that we would get. My son has been wearing his helmet now going on four weeks. He has never once been bothered by it. It actually serves as his protection gear for when he falls. We are now more worried about we he will do once it is off. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Welcome to the group! You will find a lot of support and friendship here - and great information. I was on Plaquenil when first dx with RA 8 years ago, and did really well on it for my first 2-1/2 years, then the RA got more aggressive, and I went on to other meds. I had no side effects with the Plaq. Just remember to get eye exams on a regular basis because of a very small chance of retinal damage. I wish I could have been on it still because it did not require my now 8week blood work labs. Have you tried any other medications? Are you on anything now? Take care - Kathe in CA --- prk1116 <pamkeesling@...> wrote: > Hello everyone, I am new to this group but have been > living with RA > for over 20 yrs. > My Dr. has convinced my that Plaquenil is a good> treatment option for > me for various reasons, and I'm wondering if anyone> here has used it, > and if so what type of feedback I might get? > Thanks! > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Yesterday my doctor prescribed Plaquenil and kept stressing that is a mild, no harm drug but did mention the eyes. I wasn't too sure about it but my husband was with me,that's unusual, and told her to write it. Then I said OK. She said it takes about 6 weeks to feel any effects. So I too am interested in any feedback about this drug. BVan (Betty) Re: [ ] New Member Hi Welcome to the group! You will find a lot of support and friendship here - and great information. I was on Plaquenil when first dx with RA 8 years ago, and did really well on it for my first 2-1/2 years, then the RA got more aggressive, and I went on to other meds. I had no side effects with the Plaq. Just remember to get eye exams on a regular basis because of a very small chance of retinal damage. I wish I could have been on it still because it did not require my now 8week blood work labs. Have you tried any other medications? Are you on anything now? Take care - Kathe in CA --- prk1116 <pamkeesling@...> wrote: > Hello everyone, I am new to this group but have been > living with RA > for over 20 yrs. > My Dr. has convinced my that Plaquenil is a good> treatment option for > me for various reasons, and I'm wondering if anyone> here has used it, > and if so what type of feedback I might get? > Thanks! > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 I have been on Plaquenil on and off for years. Took it when I was first diagnosed, went off when my doctor switched my meds, now I'm back on it again. I've had very good success, it definately helped me, and I have had no side effects. I go for the eye check ups regularly as recommended by my rheumy, but the eye doctor says everything still looks fine. I hope you have the same success with it that I have had! Good luck! Betty <bvanOmega@...> wrote: Yesterday my doctor prescribed Plaquenil and kept stressing that is a mild, no harm drug but did mention the eyes. I wasn't too sure about it but my husband was with me,that's unusual, and told her to write it. Then I said OK. She said it takes about 6 weeks to feel any effects. So I too am interested in any feedback about this drug. BVan (Betty) Re: [ ] New Member Hi Welcome to the group! You will find a lot of support and friendship here - and great information. I was on Plaquenil when first dx with RA 8 years ago, and did really well on it for my first 2-1/2 years, then the RA got more aggressive, and I went on to other meds. I had no side effects with the Plaq. Just remember to get eye exams on a regular basis because of a very small chance of retinal damage. I wish I could have been on it still because it did not require my now 8week blood work labs. Have you tried any other medications? Are you on anything now? Take care - Kathe in CA --- prk1116 <pamkeesling@...> wrote: > Hello everyone, I am new to this group but have been > living with RA > for over 20 yrs. > My Dr. has convinced my that Plaquenil is a good> treatment option for > me for various reasons, and I'm wondering if anyone> here has used it, > and if so what type of feedback I might get? > Thanks! > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Plaquenil can affect your liver also. My doctor has been monitoring my liver and lowered my dose when my LFT came back too high and it settled back down after that. I am going to go with MTX though. I've had enough of the tummy aches, it burns.... Take care, Jenn Re: [ ] New Member Hi Welcome to the group! You will find a lot of support and friendship here - and great information. I was on Plaquenil when first dx with RA 8 years ago, and did really well on it for my first 2-1/2 years, then the RA got more aggressive, and I went on to other meds. I had no side effects with the Plaq. Just remember to get eye exams on a regular basis because of a very small chance of retinal damage. I wish I could have been on it still because it did not require my now 8week blood work labs. Have you tried any other medications? Are you on anything now? Take care - Kathe in CA --- prk1116 <pamkeesling@...> wrote: > Hello everyone, I am new to this group but have been > living with RA > for over 20 yrs. > My Dr. has convinced my that Plaquenil is a good> treatment option for > me for various reasons, and I'm wondering if anyone> here has used it, > and if so what type of feedback I might get? > Thanks! > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 and , Thanks for your response. I saw my eye doctor this AM so I asked him what about it. He said lots of people are on it and they just watch the eyes. He will want to check me every 3-4 months so unless it is really helping I won't stay on it. He said if he sees any thing it can be stopped, no harm done. I had not heard about the burning tummy. I will be starting it next week unless I talk myself out of it in the meantime. BVan (Betty) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 I think a lot of docs start with Plaquenil because the side effects tend to be of the non-life threatening kind. I started on it, but even though the side effects may not be life threatening, for me they were intolerable. I got such severe gas, bloating and diarrhea that I was completely miserable. So, unfortunately, I didn't stay on it long enough to know whether it would have helped my RA or not. Thata said, I've heard LOTS of people post here who have had no trouble with side effects, or at worst, the side effects wore off quickly. > > > Hello everyone, I am new to this group but have been > > living with RA > for over 20 yrs. > My Dr. has > convinced my that Plaquenil is a good> treatment > option for > me for various reasons, and I'm wondering > if anyone> here has used it, > and if so what type of > feedback I might get? > > Thanks! > > > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Hi Betty, The trouble with talking yourself out of that one is that Plaquenil already has the least, and least dangerous side effects of all the drugs available to slow/stop the progression of RA. And from everything I've read, NOT doing anything to slow/stop the progression of the disease is worse for you than the various drugs, especially if you follow the Doc's instructions an keep an eye out for side effects. I have just had the disappointing experience of finding a drug (Arava) that was really working for me, and then having to stop it because my liver values were going through the roof. I'm still on injectable Mtx, but at the dose I'm currently on, that doesn't control my symptoms. So I'm taking too much prednisone (15mg/day for 6 months now) and having to take Actonel to protect my bones from that, and Diclofenac with Nexium to protect my stomach from that! I just had another repeat of my blood work today, to see if my liver is going back to normal. If it is, we've decided that the next step is to try to sneak the dose of Mtx up higher, and see if that works without causing too-bad side effects. That scares me a little, because I seem to be OK on the dose of injectable Mtx I'm taking now, (not that it's helping much, but at least nothing bad is happening either!!!<g>) and I know that most of the biologics work better in conjunction with Mtx. What if something happens and I have to stop taking that completely? Then my doc was telling me about the pros and cons of the different biologics. (which will be the next step if the increased Mtx doesn't do the trick) They all have their pros and cons, and I have to have a TB test and base line chest X-ray before starting any of them. In the end, between us, we decided that I'll try Enbrel next. It does all feel like playing Russian Roulette, but I _KNOW_ that the outcome isn't good if I choose to do nothing. So I try to learn as much as I can about each med, and take any/all precautions suggested. I also do feel good that my doc seems to be very pro- active in terms of avoiding complications and watching for dangerous side effects. Then I just take a deep breath and hope for the best! > > and , > > Thanks for your response. I saw my eye doctor this AM so I asked him what about it. He said lots of people are on it and they just watch the eyes. He will want to check me every 3-4 months so unless it is really helping I won't stay on it. He said if he sees any thing it can be stopped, no harm done. > > I had not heard about the burning tummy. I will be starting it next week unless I talk myself out of it in the meantime. > > BVan (Betty) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 I have hepatitis C in addition to RA and I take Plaquenil - primarily since it's not too hard on your liver. I'm not aware that it presents any more danger for your liver than most drugs. I think that just about any medication (from aspirin to any prescription drugs) can " affect " your liver, but it's my understanding that Plaquenil is not hard on your liver. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 I wish there was more honesty in medical treatment. When I was talking with my Rummy, and my Rheumy, and my Optician, all of them had a different time interval for eye exams. None of them has seen any damage from the medicine, and recommend up to a year between exams. Boy, this sort of thing makes me mad! Dennis Re: [ ] New Member Hi > and , > > Thanks for your response. I saw my eye doctor this AM so I asked him what > about it. He said lots of people are on it and they just watch the eyes. > He will want to check me every 3-4 months so unless it is really helping I > won't stay on it. He said if he sees any thing it can be stopped, no harm > done. > > I had not heard about the burning tummy. I will be starting it next week > unless I talk myself out of it in the meantime. > > BVan (Betty) Quote Link to comment Share on other sites More sharing options...
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