Plaquenil

[zipitydoo]

I have heard quite a few references to this drug from people that have PBC and other auto immune issues. I have also read that its not really liver friendly. Would be interested in hearing from people that take it and if they feel it has helped their condition and whether they have found it is ok with the PBC.

[Hidden]

Not heard much about this drug . But looking it up on the internet the side effects would put me off. x

[Hidden]

On looking this up (net doctor uk) all I can think of it is being used in PBC for inflammation, in our case liver.

BUT as noted with most drugs, seems possible to have side-effects that the drug is being taken for. If you read the URSO leaflet one of the side effects can be itching and back when I originally started on this drug (Dec 2010) I had a few minor side-effects at the beginning (heartburn for one) and also I did think the itching was worsening. The itching became a tricky one as with the first blood test there was improvement.

I think the vast majority of drugs 'out there' can have an impact on the liver but from a doctor's point of view, they apparently 'weigh up the benefits against the risks'.

I'd always avoided pills and still at present don't want to take anything else other than the URSO.

I was raised (born mid-1960's) with aspirin if minor child illnesses but at some point it was not recommended for the under 12's and as far as I know now, not what to take with PBC yet paracetamol (not sure what branded in the States) can be, something I'd loathe to do due to it being notso good to our livers.

[zipitydoo]

I understood from other posts that I have read that it suppresses the immune system. But might not have got it right. I know its prescribed for things like SLE.

[cazzi]

I've been on plaquenil for about 8 months. This was following problems with joints. Rheumatologist, after a battery of blood tests, gave a diagnosis of mild Lupus. Quite unusual since I'm in my late 50s. I thought this was unusual too to have Lupus and PBC. Have had no problems with the medication which they often prescribe for RA to keep inflammation at bay without the more aggressive NSAIDS. Since I have had no more "flares" with the SLE my medication hasw been adjusted to a half dose daily. PBC clinic at hospital gave no objections to the medication.

[tinapro]

I have been on plaquenil since December and notice heartburn often but it has helped me with really bad flares but not from the everyday pain. I recently had blood work taken and my SED Rate was higher at 51 and my complement total was still high along with my ANA high positive at 1:320. My Rheumatologist appt is next week and from what she said last month if the blood work didn't go down she would probably take me off plaquenil. We will see....she thinks I have lupus or RA along with fibromyalgia, ibs, migraines, etc.

[Maddieroo in reply to tinapro]

Hi-I am new to this forum. I am on plaquenil (have had lupus for 40 + years) only on plaquenil every other day for 2 years and it doesn't give me any side effects that I know of, but have just been diagnosed with auto-immune hepatitis and PBC. I am seriously bummed. I looked at the side effects for various medications and just about all of them, including ones for liver disease can cause liver disease! BTW if you are on plaquenil make sure to have your eyes checked at least twice a year because it can cause serious damage to the eye/retina.