Plaquenil

[sammers]

Also known by its fancy scientific name 'Hydroxychloroquine'.

I am just looking for stories that anyone is interested in sharing. I just started taking this because my WG hasn't progressed (yet) to a place where I NEED to be more aggressive with it. I have been told that there is a possibility that I could ween off prednisone while taking this, and that the hubby and I can look forward to adding another little one to our family too.

I have gotten the basic warnings from the doc about the digestion issues, but does anyone have anything else to share?

[Jack]

Since this is not main stream treatment for Wegener's, I do hope you are under the care of a vasculitis specialist at one of the major centers. I would hate to think that someone was experimenting on you without having a great deal of experience with this disease.

[Sangye]

Ditto to what Jack said. With every word of it underlined.

[eileenv]

Hi Sammers, i take plaqunil and pred, but i'm still waiting for a conformation of wegs. I haven'y had any real issues with it, what were the side effests you were told off.

[pberggren1]

I don't even know what Plaquenil is?

[jola57]

Sammers, I took paquenil at the bery beginning before being diagnosed with wegs, as soon as I was diagnosed I was told to stop plaquenil as it did not have any significant effect on wegs unless there is new evidence I don't think it is going to be very helpful

[JanW]

Ditto to what everyone else said. In mild to moderate cases of wegs, imuran, cellcept or methotrexate are standard of care in addition to a (shorter) course of pred. What you have been prescribed is mainly for tough cases of lupus & RA. The only other thing I know about it is that you need to have a special eye exam because of potential damage.

[sammers]

Thanks everyone for the concern and the good wishes... here is the deal because I have such a (what has been called) mild case of WG we are opting for plaquenil at this time for one major reason, this tme next year my husband and I would like to be expecting our second child. Although my doc is not a WG 'specialist', as there are none in the PHX area, she has had a number of WG patients. I do not feel as though I am being experimented on; she has been quite clear with me about staying on top of this disease and her plans on getting agressive as soon as the need be. We are paying close attention to all of my organs, including my eyes, and doing blood work often. I cannot express enough how much I recognize that I am lucky to be a woman my age with WG diagnosed so soon. All the tests so far have shown that the disease has not moved into any pary of my body besides how it has manifested in my sinuses... and that seems to be under controll lately, as I have gone from sinus infection every 4-6 weeks to just one in the last five months.

The truth is, I spent 6 weeks thinking I was going to have to start cytoxan treatments and they were the hardest 6 weeks I have faced. The impact a treatment like that will have on my body, my family, my soul, and my job were just too much for me right now. I feel that I am in a place wher I can take the risk of putting this aggressive treatment off for the time being. The goal of me on plaquenil is simple: keeping the WGs 'at bay' as long as possible, so that I can be a great mom to my little one and maybe add another to our family before I turn 39. After that, I do expect to get agressive with treatment and I will be ready.

[Sean48]

i took plaquenil a long time ago for my RA.I can't quite remember why...... I dont think its that much of an aggressive drug. I took it every day for a long time but didn't need to have blood tests to check my liver. Is it a drug for inflamation?

[elephant]

Sammers that is great no sinus infection for 6 months, I still get them like you said 4-6 wks. Trying to get to the bottom of it. Do you have ear or eye involvement?