Plaquenil

[Val1227]

Hi everyone,
Has anyone tried Plaquenil for WG? My doctor gave it to me to help me fight the fatigue... It has been giving me stomach upset....Hopefully that will go away? fingers crossed,

Valerie

[drz]

Is it helping with the fatigue?


Hi everyone,
Has anyone tried Plaquenil for WG? My doctor gave it to me to help me fight the fatigue... It has been giving me stomach upset....Hopefully that will go away? fingers crossed,

Valerie

[Val1227]

Not yet -- But, I was told it takes a few weeks.

[pberggren1]

I have heard of it but don't know what it is.

[Debbie C]

Let us know if it works...never heard of it

[mishb]

I was going to start on plaquenil but it wasn't for fatigue, it was for my RA.
Apparently it is excellent for the joint pain but you need to have a special eye test first before you can start taking it......I hope you had this test done.

I was eventually not put on to it because my Rheumy at the hospital changed and the new guy didn't think I needed it.

Trudy takes plaquenil and she told me that it can make you feel quite sick for a while but to stick with it and you come good. Hopefully Trudy will come on here and let you know all about it.

I hope it works for you

[Trudy]

Yes, I have been using Plaquenil for about seven years. I was diagnosed with Lupus in 1998. I am very tired, but I think that is from Imuran. No doctors seem to know how Plaquenil works, but it helps prevent flares for Lupus. I tried going off it twice and flared both times. I know lots of 'Lupies' who take it and no one has had the eye problem they warn about. I do get my eyes tested twice a year though. If it helps for one autoimmune disease, it might for another. It would be worth a try. Take it with food and give the nausea a couple weeks...it does go away. Hope you feel better soon.

Since I have Lupus and Wegener's, what would you call me? A Lupieweg??

[Al]

Yes, I have been using Plaquenil for about seven years. I was diagnosed with Lupus in 1998. I am very tired, but I think that is from Imuran. No doctors seem to know how Plaquenil works, but it helps prevent flares for Lupus. I tried going off it twice and flared both times. I know lots of 'Lupies' who take it and no one has had the eye problem they warn about. I do get my eyes tested twice a year though. If it helps for one autoimmune disease, it might for another. It would be worth a try. Take it with food and give the nausea a couple weeks...it does go away. Hope you feel better soon.

Since I have Lupus and Wegener's, what would you call me? A Lupieweg??"Lupieweg" sounds pretty far out, Trudy, but, what's in a name, eh...?

If memory serves, Plaquenil is an anti-malarial drug. As such, I can think of a few possibilities for its inclusion into an immunosuppressive regimen, though, I would think, only if other drugs weren't managing things. (Maybe SLE is different in this regard.) The immune system has a lot of stuff going on to induce inflammation. One fairly recent connection to WG is what are called toll-like receptors (TLCs). There is a whole family of TLCs. They seem to be involved with a lot of immune actions leading to inflammation. This could be the common ground with malaria, which is caused by a parasite, but induces a massive immune response. Just a guess here....

Al

[mishb]

Yes, I have been using Plaquenil for about seven years. I was diagnosed with Lupus in 1998. I am very tired, but I think that is from Imuran. No doctors seem to know how Plaquenil works, but it helps prevent flares for Lupus. I tried going off it twice and flared both times. I know lots of 'Lupies' who take it and no one has had the eye problem they warn about. I do get my eyes tested twice a year though. If it helps for one autoimmune disease, it might for another. It would be worth a try. Take it with food and give the nausea a couple weeks...it does go away. Hope you feel better soon.

Since I have Lupus and Wegener's, what would you call me? A Lupieweg??

An excellent name Trudy,

I also have Lupus and RA so I guess it was for the lupus that they were going to give it to me for.

Al, my old Rheumy said that it was an anti malaria drug and it is good for joint pain but is also excellent for heart health. She said after taking plaquenil I could probably stop my blood pressure tablets. Wow, scary little, one pill fixes all,tablet that plaquenil

[gunnyl]

My Rheumy just prescribed me Plaquenil today as she is bringing me down from the Pred for a Flare. She said it should keep me from flaring working in conjunction with the Methotrexate and that it has less side effects than the Pred does over long term use. So my Rheumy is replacing Pred with Plaquenil and although there are possible eye complications; Prednisone can cause Cateracts and other problems when taken long term. I already had an appointment with my Ophthalmologist tomorrow so I'll ask her about it too. Pred long term can cause so many problems and she wants to prevent those if possible. Also my wife has Behcets and has been on Plaquenil for a couple years with little to no side effects. Hope this helps. I'll post an update in a couple weeks as it takes at least that long to get in your system.

GL

[mishb]

Thanks Gunny,

I have been on Plaquenil now for a few months without any problems.
The joint pains are milder and the blood pressure is excellent.

I am still on 5mg pred and 20mg MTX and will look at decreasing at my next rheumy appointment which is in December.

I hoe it works as well for you

[gunnyl]

Update:
Been on Plaquenil since Friday, feeling no nausea but a little fatigue. My MTX day is Saturday and I was knocked out all day Saturday. Don't know if it was a reaction to the Plaquenil or not.
Talked to my Ophthalmologist and she said that Plaquenil is much more preferable long term than Prednisone. Although it can cause Macular Problems she said the number of people who have problems vs number of people taking it is negligible. Prednisone long term can adversely affect all of your systems and for the eyes it can cause Glaucoma and Cataracts.
Current Meds for me:

MTX 25 mg
Folic Acid 1 mg
Prednisone 7.5 mg
Plaquenil 200 mg

I'm stepping down on the Pred. 2.5 mg every 14 days.

GL