plaquinal question

Hi Lisa,

I received my SLE diagnosis yesterday and started Plaquenil yesterday. My rheumy stated it is a very slow acting drug and can take up to 6 months. I am currently taking 15 mg of pred and doing a 5 mg taper per week and will likely continue on the pred until the Plaquenil kicks in. I also have UC which fortunately is in remission. Have you had any GI issues with the Plaquenil? I was reluctant to try it but after researching think it's my best option. The pred is definitely a life saver and if you are having issues perhaps you should consider going back on pred until the meds fully kick in. I have also read that sun exposure should be avoided with lupus as it can make the symptoms worse. I don't notice, yet, that I have any issues with the sun but have been using SPF 50 - 70 when I know I will be outdoors. Wish I could give you more advice but I am pretty new to this diagnosis and still trying to take it all in.

I did the same thing with the pred so I could enjoy my vacation. I was totally fine on vacation and when I got home had a horrible flare where I was walking like an 80 year old and couldn't pour myself a cup of coffee! I am so not used to this either. I am extremely independent and hate asking anyone for help but I have had to. I work full time and between my husband and I have six kids. Some days I get so depressed that I can't stand myself but in reading the posts out here I feel better, it could be worse, right? The other thing, when you say burning do you mean in your joints? I have burning pain in the joint in my foot but the joint pain in the my fingers and wrists is different - they get really stiff and I can't bend them without excruciating pain. I'm sure you are doing this, but I'll throw it out there - warm baths with Epsom salts or hot showers. It helps to get my joints moving and seems to alleviate the pain - even if it's short term. Hope you feel better soon!

Hi there,

Plaquenil generally takes 2-3 months before you notice any effects. However, lots of times we don't think it is doing anything, but then stopping for a week or so shows that it really is helping. (Don't test this out, you need to keep taking it to build up to therapeutic levels.)

It is entirely possible that your symptoms are increasing due to increased disease activity -- just think how much worse it would be if you were not taking Plaquenil!! Sun sensitivity, major fatigue, hair loss, and even burning joints are all common Lupus symptoms.

Since you have noticed your symptoms are increasing, I would suggest you try to see your rheumy sooner rather than later. There are what I think of as 3 levels of treatments.

1) Plaquenil & Prednisone.
2) Imuran, Cellcept, or MTX. These are tried one at a time, it is not known why one will work for patient X and not patient Y, they are trial-and-error to see what helps you. These are in addition to Plaquenil & Prednisone, although usually the prednisone is cut back while trying these.
3) New and much more serious approaches are Benylsta and IVIG.

It may be time to do something in addition to the Plaquenil.

Let us know how it goes!

Yes, the tiredness gets old and so does the weakness - I hate when I can't open a jar but like you my kids and husband have been helpful and understanding. I remember thinking UC was bad but holy cow I think I'd take that over this!

Here is some information I found on planquenil:

Patients taking plaquenil may begin to notice improvement after one or two months. It can take up to six months before full benefits of plaquenil are realized.

Hang in there!