I have been seeing an immunologist for over a year who is convinced that I have connective tissue disease (not eds) which is causing mast cell deregulation. My last blood work done by a rheumatologist, showed that my homogeneous ANA was 1:320. My sed rate and c-reactive protein etc have been up and down the past year. The rheumatologist feels that I have a connective tissue disorder...possibly lupus. I had been on generic plaquinel (250 twice a day) for 4 weeks when I suddenly developed a rash that went from my wrists to arms and then legs and started to spread to my chest. I saw a dermatologist who felt it was from plaquenil. My primary also felt that it looked like a medication rash. I stopped the plaquenil and was put on prednisone for two weeks. The immunologist still feels that connective tissue disease is a the root of my problems and feels that plaqenil is the way to go. She wants to do a desensitization protocol for plaquenil. The doctor is contacting a formulating pharmacy to have the pills made to her specifications. Has anyone done this?
No but I know that when plaquenil went generic I had trouble with the generic. The medicine was the same but they used different additives to hold it together. I switched back to “name brand” and the symptoms went away. It took quite a while before I was able to switch to the generic. So your doc has the right idea. A compounding pharmacy can make meds without all the fillers so you know if it’s the plaquenil causing the rash or something else. I hope you’re able to take it, it has helped me immensely. I’ve been on it for over 30 years now and it really has kept the disease from progressing. Hugs, Annemarie
Thanks for the reply
Are they sure the rash isn’t a new manifestation symptom? I suddenly developed rashes as my Lupus progressed…
No but it is cool that you see an immunologist. Recently i had a rash start on my face, the doc said to take an extra plaq once a day for a week, then the rash went away. Resumed my regular dose of twice a day. So i also wonder if it was another symptom of your disease manifesting.
Just curious…did your rash itch at all?
Yes it did.
No it didnt…i guess because it was inflammation vs an allergic reaction or fungus. How about yours?
I just heard from my walgreens that the manufacturer just discontinued name-brand Plaquenil and can’t order anymore! I tried generic at first when I was diagnosed almost 2 years ago… Didn’t do well on it (no rash, but ringing ears and nausea) and stayed on name-brand ever since. Hoping I can find a version I tolerate ok!
You can look at ingredient lists here:
http://dailymed.nlm.nih.gov/dailymed/about.cfm
It has the full drug info for prescribers… Chemical compound, mechanism, risks (not just a list, but discussion of studies to assess…) Basically, way more info than you might want, but if you scroll down all the way to the end it will list ingredients by dosage. Comparing brands is kinda inconvenient, as there may be 20! But if you really need to know what’s in your meds, this is the best source I’ve found. I pretty much always check it for a new one, at least one I’ll take for longer than a few days. There’s a different site I use to check interactions, but I can’t remember right now which one it is… Hope that helps!
Brynn