If the mods think this is better off in IMHO or MPTIMS, I bow to their superior experience and judgement.
A while ago, I posted this thread about some strange spots on my hand, arm, and chest. Since then, I’ve been through medical madness and (I think) six separate diagnoses. The kind people at the dermatology teaching rounds at Columbia University finally sorted out what was wrong with me. The answer, unfortunately, is lupus.
My only physical manifestation of the disease is the skin lesions (i.e. minor cosmetic problems) and my bloodwork indicates little likelyhood of any kind of serious manifestations any time soon. However, my rhuematologist has suggested I start taking hydroxychloroquinine (Plaquenil) as a preventitive measure, although she’s not pushing it hard. I’m not terribly excited about taking drugs daily and prophylactically, but I’m thinking about it. I’ve looked up the side effects, etc…
So, my question is: for those of you with medical experience/experience with lupus/experience with Plaquenil, how well is it really tolerated? Is it one of those “I’ll take it because I have to in order to prevent serious lupus flare-ups” or “I don’t even notice it except as another pill” sort of drug?
Just to make things sparkly clear, I’m in close care of multiple real, live doctors, and I’m not trying to second-guess them about drugs. The rhuematologist said flat-out that both risks and benefits of Plaquenil are minimal in my case, so she’s leaving it up to me to decide. So don’t anybody worry about me taking internet advice instead of seeing a doctor, I’m just looking for some Doper experience out there.
My husband has been taking chloroquine for SLE for about 10 years now; his side effects have been minimal. He went through a period of about a year where there was concern over blood vessel changes in his eyes, but the opthalmologist decided there were no actual problems or disease processes. He has a bit of an acne problem, but I don’t know that that can be blamed on the medication. If he is reallly pushing hard (80 hour work-weeks; 4 hours sleep a night) then he has problems with blurred vision and light intolerance.
He has in the past taken steroids, which he found much harder to tolerate, and he takes an NSAID (previously ibuprofen; when that started tearing up his gut, he switched to Celebrex.)
My girlfriend has multiple sclerosis and hashimoto’s thyroiditis, and has had good results with Plaquenil. Aside from the vision-field testing (be rigorously regular about it) it hasn’t proven to be a problem at all.
She says the binders and fillers sometimes differ between brand-name Plaquenil and hydroxychloroquinine (generic) and for her the brand-name stuff is more reliable; but that whichever works for you you should stick with whenever possible.
Oh, and stay out of the sun. Major sunburn opportunities.
Well, you’ve probably got a lot more understanding of the risks than I do (seriously). That won’t stop me from adding my two cents, though.
No drug should be taken unless the anticipated benefit outweighs the likely risks. As stated, the main risks of Plaquenil are skin problems (sensitivity to the sun, pigment changes), eye problems (including serious retinal changes), and, rarely, bone marrow suppression. There are others, too, as you know.
The skin problems are primarily cosmetic and their possible development would seem to be a fair price to pay for prevention of worsening lupus.
The serious ocular problems are quite rare at usually used dosages, especially if one undergoes regular check-ups by an ophthalmologist. For example, this study showed no risk for doses less than 310 mg/day. In fact, I believe current recommendations for regular eye examinations for people taking Plaquenil are much less stringent than in the past.
I don’t have a good sense for the frequency of bone marrow suppression, except to say it must be quite rare. I can find no explicit references to it except in the “product information” section of my online drug info source. Certainly, I have never encountered it nor known anyone who did.
Bottom line is that the drug seems quite safe. Side effects are few (and that’s despite their being used primarily in a patient population at risk for the ‘weird and wonderful’, i.e. in SLE).
Hey! I was weird and wonderful before I got lupus!
The problem right now is that the lupus effects I’m having are primarily cosmetic (mild skin plaques, treatable with topicals) and not expected to worsen soon, so I’m having some difficulty deciding between cosmetic disease problems and possible cosmetic drug problems.
