I was recently dx with lupus. I had been taking generic plaquenil for about 4 weeks when suddenly I developed a rash that started on my wrist and spread to the other wrist, legs and chest. I went to a dermatologist who said that the rash looked like a plaquenil rash. I am now not taking the medication and am on a 21 day tiration of prednisone. Once I am done with the prednisone, I will see the rheumatologist who may try name brand plaquenil. An immumologist I see suggested a desensitization protocol for plaquenil. I am unsure if it makes sense to do a desentisization protocol for a medication that may not even help!!!!!!!!!!
Now on top of everything, I seemed to have picked up one of the several viruses that are going around at work
I share your frustration. I was unable to take plaquenil as it caused intense gastrointestinal issues. I would have to stay home and ready to run to the bathroom at a moments notice. My Dr put me on Imuran, but it can have dangerous side effects so they need to draw blood every visit to make sure everything is okay. The problem is that it takes a long time to increase dosage and so far I feel no relief of symptoms taking it. The Dr has had to up my dosage of Prednisone twice now to 20mg and ween me down again and again. When I take 20mg of Prednisone I feel relief within 2 days. I feel wonderful without the pain and the increased ability to breath, but alas I have to ween down to 5mg and that relief has disappeared. I am only working 20 hrs per week, but even that is very difficult. My skin is red, I sweat like a pig and my back and hips are in killer pain. Now I am limping because a new issue in my left hip. It is so painful I can't put weight on it. I work tomorrow so now I am wondering what the "bleep" to do as I am having serious difficulty walking. So yes I share your frustration, sorry I made this all about me. :| Ask your Dr about trying Imuran
I am hesitant about trying medications with potential side effects worse than I am feeling untreated
This is what happened after 10 days on Plaquenil. It got worse before it got better. Ten days in hospital in total darkness with wet towels & ice pacs all over me. Itch was mind altering, still shudder to recall this time.
Roxy & Kaz, so sorry you guys are having such a tough time on Plaquernil. I was just the opposite. Had bad constant rash until I went on the med and now for the most part it has cleared up. Having major joint, back and hip pain however. Hang in there ladies.
I feel for you. Stay strong and Hang in there.
Kaz, that rash looks painful. I was lucky. Mine was on my wrists for a few days and then rapidly spread to the arms, legs and my chest. The dermatologist said that it looked like it was a plaquenil rash. It took a few days for the itching to subside. The crazy part is that I don't have a written in stone dx yes. The immunologist is saying UCTD. The rheumatologist also says UCTD and most likely Lupus (based on large pericardial effusion and recent elevated homogeneous ana). The rheumatologist also feels that I may have fibromyalgia. I am able to function but definitely no where near where I should be. I had to call in sick two days since September because I was so exhausted that I just couldn't function. I want to get that spark back!!!!!!
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Yes it was total coverage apart from my stomach, even the tops of my feet were spotted. It took many months to clear up too. I did meet another local lady who had an even worse reaction to Plaquenil her skin was shredding off in sheets & she was close to death.
I take Imuran & Prednisone now & SUPER safe sun & light wise. Best Wishes to you all. Kaz x
Oh dear! I have been taking plaquenil for about 2 years and it had been really good in suppressing my rash and joint pains. I still get flares but they are not as bad. I hope you find something that works.