Wanting some advice please. My doc wants me to start on Plaquenil and I am so afraid. I have no definitive diagnosis at this point. Started out as parvovirus....that has cleared up but i continue to have flair ups. doc says that she believes it is a "serum negative autoimmune" problem going on. My blood work all comes back negative but my symptoms all scream autoimmune. I have received numerous steriod IM injections with temp relief. Started on prednisone about a month ago. Still having flair ups so she has decided to start DMARD and I am so nervous! Wants me to continue on prednisone as well and reduce dose after a week on DMARD. I am such a bad patient.....I myself am a nurse and tend to look at all the "bad" stuff a drug does vs the good. Anyone have any suggestions? Any experience with this drug? I am just so scared about the side efffects and am really struggling to start on it. Any help/info would be greatly appreciated. Thank you!
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Plaquenil
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4 replies
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- By scottslass
- Posted November 4, 2009 at 8:55 am
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Hi ptcbelle,
The only side ffect I have had from Plaquenil has been a rash on both my legs. My rheumatologist said this was the best drug for my symptoms, I have UTCD. He reduced doseage from 400mgs to 2000mgs daily and said if rash comes back again then I have to contact him. Heres hoping as the next step would be steriod injections or immunnesuppressant drugs which I don't won't! I'm a nurse too, so I know how you feel.
- By Bonnice
- Posted November 5, 2009 at 3:32 pm
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I have been on it for awhile. I also was worried, I was a nurse too. Just keep up with the eye appts., and get a second opinion.
Take Care.
Bonnice
- By kmb
- Posted November 17, 2009 at 1:03 pm
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I just started plaquenil last Friday for MCTD/ Lupus. I havent noticed any reactions except gas which doc said should get better as my body adjusts to the medicine. Did your doc say for you to see an opthamologist when starting treatment? Apparently their is a slight chance of vision disturbances and eye damage. Doc told me to get checked every six months w/ my first appt being today at 2:30. I wish you the best on this medice and feel free to compare notes if you want to. ( i just joined this group but have been a member of the inspire sarcoid group since march) long story, i thought it was sarcoid turnd out to be Lupus/MCTD. By the way isnt parvovirus something that dogs get. I was the shelter manager for a Humane Society for about 2yrs and associated this w/ dogs??
- By ptcbelle
- Posted November 17, 2009 at 9:38 pm
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Thanks for all the advice! I was suppose to go up to 400 mg a day last friday but I was afarid and didn't. I can't get into eye doc until 12/17 though rheumy wanted me in within a month of starting. so this is why i decided not to "fast track" med by only taking once a day x 1 week then increasing. decided to do 2 weeks at once a day then increase. i'm telling you.....i am a bad patient. can't help it. all this scares me to death! KMB....how did eye appt go? everything check out ok? does anyone have suggestion on how long this stuff takes to help?? I am so tired of being on pain meds! but i can only imagine the pain if i wasn't as i am having break through pain on them :( all of this has been so terribly hard for me to swallow when i can't be shown a diagnosis on paper.......fear i am taking all these bad drugs for nothing. i am really glad i found this site....it has made all the difference to be able to talk to others and not feel so alone! KMB- yes dogs do get parvo.....the human version is not the same. most the time it happens in childhood and presents as fifth disease. am told that most people who get it never even know they had it.....feels like common cold......but in select adults it can cause joint pain, etc and usually goes awya with no residual effects. virus is not active in my body anylonger according to blood work but doc believes it has triggered an autoimmune response within me....which one we cant determine yet but it seems to be "acting" just like one. responds to high doses of steriods and as soon as it gets out of body (injections) i have a flair up. has been no fun. keep me updated on how plaquenil does for you. would love to compare notes! Thanks again to all!
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