PDA

View Full Version : New person on site with Lupus SLE, Sjogrens, Reynauds, Celiac, RA and Fibro



anderbuf
02-16-2012, 03:58 PM
I discovered this site researching Plaquenil. I have been on it for many many years. I live in Mexico and currently there is a big storm raging outside so I cannot get to the pharmacy to pick up my meds. an hour away. Totally out of Plaquenil and have been for two days. The blogging seems to indicate there are no repercussions from being off for a couple days. Phew! I have joined other sites but this one seems to have people that have it together. If I can be of any help to anyone I would be happy. I have been on Remicade, Enbrel, Methotrexate and currently having infusions of Benlysta. (The new Lupus drug) I have been on the loading dose for the last month, so far nothing. I was put on Savella for a couple of months helped with the pain and fatique but I have now realized that the horrbile sweats, fevers and nausea are due to this drug, so I am weening off. Does anyone else have input on Savella. Boy if you don't have the side effects, it is a pretty nice drug, but I would rather have the pain the the side effects.

steve.b
02-16-2012, 07:27 PM
hi,
and welcome.

please be carefull not to go too long without plaquenil.
there are a few on this site who can testify, abstanance is not good.
it may take months for
the effects of plaquenil to be felt......
but it only takes days without it, to feel bad.

i am glad you found us.
it will be good to get to know you.

please read a few of the older threads, they are our personal experienceswith lupus.

tgal
02-16-2012, 08:34 PM
Hi and welcome to WHL! I am one of those that can tell you NOT to go off the plaquenil for long. A couple of days should be OK but it doesn't take near as long to wear off as it does to kick in. Within 2 weeks I was in a major flare that has been basically constant for 6 or more months. get it as soon as you can!

I look forward to getting to know you and welcome to our family!

BonusMom
02-16-2012, 09:26 PM
Welcome to the club! I'm looking forward to hearing about your experiences with SLE and the various meds.

I'll echo what the others have said about not taking the Plaquenil-ok to miss a few days, but you don't want to miss weeks or it'll take a while to get back to the feel good stage-darn!

You're gonna love it here--we really are a good bunch of people!

magistramarla
02-16-2012, 10:02 PM
Hi and welcome to WHL!
I've been on Plaquenil for nearly three years now, and I notice that I don't feel so great if I miss more than a couple of days.
I hope that you can get that prescription soon.
Like you, I have an overlap of AI issues - Lupus, Sjogren's, RA, Psoriatic Arthritis, Raynaud's, with Meniere's, Spasmodic Dysphonia and possible Spastic Paraplegia thrown in for more fun.
It will be interesting to hear about your experiences with treatments in Mexico. Did you move there from the US?
Hugs,
Marla