Going off Plaquenil - and starting again

[Nans]

I was wondering... I see where there are Sjogies who thought that plaquenil was not doing much for them and stopped taking it only to find that it actually was helping so started on it again.  Do you have to go the 3+ months before it starts working again or does it kick in sooner the second time around?

[tomsmom]

I stopped plaquenil 5 weeks ago.  I had been on it for 5 months and wasn't feeling any better.  I tried to resume it last week but had some gi issues and decided to wait a while longer.   I hope that if it was helping you and you go back on it it doesn't take too long to kick back in for you.  Take care!

[Nans]

Hi tomsmom,

I have not gone off of plaquenil but have read a few posts from folks who have and I was wondering if it would take the same amount of time for it to kick in the second time around. 
Did you go right back to your full dosage when you started taking it again?  My rheumy seemed to want to get me on 400 mg/day of plaquenil quickly so she started me there and I had terrible diarrhea.  She had me back off to 200 mg and told me to slowly get back to 400 mg when I was feeling better.  I gather from posts I've read here that a lot of rheumys want their patients to work up slowly to the full dosage which, in my experience, seems to be the way to go.  I don't know why mine started me on 400 mg... maybe it's because my ANA titer and positive anti-Ro were so high.   

[jordozmom]

I was on Plaquenil for about 4 or 5 years and it used to give me terrible GERD.  My PC finally RX'd me Prevacid and I took both for a while, then thought that the Plaquenil really wasn't working like it had been so I went off of both.  At times I would talk to my doctor about how it had just sort of stopped working and he would up the med only for it to start bothering my stomach again.  The GERD was so bad that I was having problems swallowing (which I've read it can do) and doubling the Plaquenil made it worse.  So I got off of the Plaquenil - that was about a year or two ago - and I'm trying to get back on it.  I told my Rheumy that it gave me bad heartburn and he didn't believe me - told me it doesn't say that it causes heartburn.  Well, since being off of it the GERD has been better, and just recently I tried getting back on and it gave me terrible heartburn AGAIN and inflammation up my esophogus, even while taking Pepcid AC Max strength.  I was eating popsicles just to try to cool my throat, esophogus and stomach off.  So now I'm going to try to again, only I'm going to try a diet first to see about eliminating heartburn causing foods then see if it is the Plaquenil or not.  Grrrr - so frustrating!  Also, the Plaquenil was causing me muscle weakness.  We lived in a two-story home and I couldn't hardly get up the stairs - I'd get to the top and my legs would start shaking - like noodles.  It was scary!  But I'm too fatigued without it so I'm going to go back on it.

Good luck going back on it!!!

[tomsmom]

And I thought it was just me.  The heartburn/upper gi upset is horrible on plaquenil for me.  But I too can't stand the fatigue/joint pain and I know if I give it some more time, plaquenil may be of great help to me.  I took only 200 last Monday night and it gave me nasty heartburn.  I'm supposed to be on 400 daily.  I take the medicine with food but for whatever reason it still messes me up.  It also makes my muscle weakness worst.  I guess I'll just have to decide which is worse, heartburn and some muscle weakness or getting worse autoimmune wise.  Happy Thanksgiving to everyone!

[lori]

I just went off for the second time. twice now i have been on it for a month and boom, strcuk with a diveticulits attack- i dont know whether it makes my system less able to fight off an infection or what...I am totally paranoid about that now and leary to start again. I had begun on 100 mg and worked up to 200 - not sure if there is alink- I had one surgeon say that it compromises my immune sysytem... havent been able to get an answer out of any dr. I hate diverticulitis attacks so its enough to scare me off the  stuff for a while.

lori

[Navigator]

I am confused. I am on 400 mg of generic and so far so good...belly is ok...do have constipation problems I never had before but trying to deal with those with mirilax ...and so far ok...but isn't plaquenil to sllloooww the progression of this chronic ..only getting worse disease??   I really do not want to go back to that last flare I had if I can avoid it.  I will take side effects to keep that from happening again anytime soon.

My rhemy also keeping me on 2000mg Vit D. said he finds that people with high levels of Vit D. respond better to cancer (lymphoma) when and if it occurs...(Oh great).... but I trust this guy and I will definitely keep my Vit D. up. Will be retested in spring.