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Newly diagnosed
Hollybgroovin
Monday, June 23, 2008 at 01:04 PMre: Newly diagnosed
otis
Monday, June 23, 2008 at 07:49 PMare you still on Plaquenil and if so it sounds like you have had a positive benefit from the drug???? Are your liver function tests normal. I am trying to keep as open minded as possible, but all these treatments have such serious side effects. Dosn't appear that there is much of an alternative however. How long have you been dx for?
re: re: Newly diagnosed
Hollybgroovin
Monday, June 23, 2008 at 08:20 PMI have been on Plaquenil for 3 years, have been diagnosed for 3, had pain for 5, and the doctors think that I have had it for about 14 years now. Plaquenil is a great medication and from what I have heard many people benefit from it, but it can take up to 4 months before it starts making a difference. My liver function have been elevated many times, but they watch it closely and I am doing alright. It is scary to know that some of these medications have serious side effects, but with the right treatment they can somewhat give you your life back as well. My only advice to you would be not to take any treatments or medications that you don't feel comfortable with. That's very important as you probably know. Medications seem to be one of the only things that we seem to have control over with this disease. Keep your head up, and give it some time, but if you don't have relief in the meantime let your rheumatologist know so that he may add some or adjust your dosage. I am here for you anytime! Good luck and best wishes!
re: re: re: Newly diagnosed
otis
Tuesday, June 24, 2008 at 09:13 PMyour answers have been so helpful - I hope you don't mind. What do they do when the liver function tests are elevated - stop the drug for awhile???? Will your hair ever grow back or do we just reconcile ourselves to the fact we will be bald for the rest of our lives. Am happy if Plaqenil works as am told it is the least toxic of drugs so of course prefer that. Just want to feel normal again - have an occassional glass of wine when out for dinner with friends and enjoy life. Not there yet but working at it !!
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I too have experienced hair loss to the point that I needed a wig. In fact, I have six different wigs. Please keep your head up as Plaquenil is a wonderful medication. If you are concerned about the damage then talk openly and honestly with your rheumatologist and mention all of your concerns. You may even want to mention that you would be more comfortable on a more aggressive treatment if that is what you want. Since everybodys case is a little different, methotrexate may not be your next step although it usually is. Keep your head up and be honest with your rheumatologist as it is important to have that relationship with your rheumatologist. Remember that we are all here for you whenever you need support! Good luck and best wishes!