Question for Vee about reducing Plaquenil - Lupus Message Board

anxiousinnj · 07-19-2006, 04:26 PM

HI Vee,
Forgot to ask you why your doctor reduced your dose to 200 mgm per day?
I'm just trying to get all the info I can before I go back to my rheumy in a few weeks. I was on 400/day for 6 years, & we just reduced to 200/day as we thought it may have been causing some side effects--as it turns out I don't believe it has ( was other issues). Because I am so stiff & genrally feeling like yick, I don't kow if I should ask to go back to the 400 mgm.
If there's a good/safe reason to stay at the 200 mgm I will.
Just wondered what your input would be.
I have been lucky & have been able to avoid pred & any of the other "big guns" so hoping I don't put myself at risk of needing more potent, potentially dangerous meds because of the Plaquenil reduction.

thanks !
anxiousinnj Kate

VeeJ · 07-19-2006, 07:11 PM

Dear Kate, I think I was reduced, as is generally done, because cell pH was back to a better balance, which is a factor in tamping down the aberrant immune process. I think that's how Plaquenil works, by altering the pH balance. So once that rebalancing is achieved, the dosage may be reduced. (I must have read that somewhere---maybe in Dr. Wallace's hardcover?) But I still need pain relievers at times, esp. in spring & in humid weather. Maybe you do, too?

I think reducing antimalarial dosage tends to go a lot more smoothly than reducing steroid dosage. With steroids, weaning is critical & things can indeed fly out of control. Also, if a person needed steroids to begin with, a deeper form of the disease is presumably present, thus more chance of things rearing up again, probably...

You could ask your dr. for a better understanding & guidelines of what to watch for. I worried, too, when I was reduced; but I certainly did not "tank"! Hope same stays true for you! Take good care, Vee

anxiousinnj · 07-19-2006, 07:48 PM

Vee,

thanks--see a few years ago I asked my rheumy if I continued to do well could we ever cut back on the Plaquenil. He's a very easy going kind of guy & that's the only time I ever heard his voice raise...he said "don't even think about it--you will take this for life--if you cut back it could have catastrophic consequences without warning". Scared the you know what out of me so I dismissed the thought & was grateful for my Plaquenil.
The reason it was cut back was because I was very sick & my pcp kept saying she felt it might be due to the Plaquenil--symptoms were much the same as listed for Plaquenil adverse effects. We since have realized there were other medical reasons for my symptoms.Severely inflamed gallbladder, weight loss with anxiety/panic attacks ( after having every medical test known to man within a very short time frame, looking for every frightening disease you can imagine-)-

So, having stored that comment my rheumy made a few years back in my brain so well, I don't want to have this "catastrophic event"....lol.
I will ask him more about his comment on my next visit, but just thought I would see why others may have reduced & how they have done.

I did not know about the PH balance thing--thought I had read it all, but I guess not. I don't recall reading anything of that sort in Dr. Wallace's book.
Interesting...

thanks for your response--much appreciated.

anxiousinnj Kate

VeeJ · 07-20-2006, 04:45 AM

Hi, Kate. I found where I read that info. Dr. Wallace described how antimalarials are thought to work, but he used the phrase "altering the acid-base balance of cells". (I *think* that's what "pH" means?)

I expect to take the reduced dosage until the cows come home. That's the sense I got from the one & only time I expressed curiosity.

I got anxiety attacks, too, as others here also discussed a year or more back. Just commuting to work was an adventure. And I had to fly a lot for business, then, too.

I laugh now, but it wasn't funny then.

I'm really glad you found the group here. Catch you later, Vee (P.S. Did you have to have your gallbladder removed?)

anxiousinnj · 07-22-2006, 11:00 PM

Yes Vee, gallbladder came out 4/20/06--they said I would be fine & back to work within a few days & I still have not gone back to work. Had a very rough time of it. Pain that just would not let up, cold not eat, then came more tests- you name it, they looked for it...& with each test they did I went more into severe panic mode. I finally gave in & went to a psyche doc who diagnosed GAD which had progressed to panic ( really??) & I agreed to try an antidepressant. Didn't know what else to do because I really felt like I was going to die & they just were not finding out why.

I'm doing much better thank God, but always wondering what part has lupus played if any in this mess. I try to just forget about it & am doing better at that, but wonder if lupus itself can mess with your brain to cause the severe anxiety--I have read that it can. But since my ANA is negative, I am told the lupus is quiet. If it hasn't flared up with all of this, then I guess I am in good shape lupus wise. I was worried with the Plaquenil being reduced if that had anything to do with all the problems.

I get tired of trying to figure out all the what ifs with this disease as I guess we all do......