Had my regular rheumy visit yesterday. Reported my periodic fatigue days and mild to moderate dryness. She suggested giving plaquenil a try, i.e seeing how I feel after 6 months and weighing that against any side effects. And my blood work shows disease progression. I agreed, as my change in diet and supplements, while I believe are helpful, aren't doing enough. Took my first pill today, with some food, so am off and running on the experiment. Thanks to you all I'm aware of some side effects to expect but have hope they'll be mild and disappear when my body adjusts. But internet descriptions are scary. Any suggestions on this will be appreciated!. Will keep you all posted.
Most people do not have the reaction that I did. You should do very well on it and start to feel better soon.
My rheumy told me to NOT look it up on the internet until I was on it at least six months. He said he wanted me to weigh the benefits against the possible side effects. And I'm really glad I listened to him.
I love Plaquenil! If you haven't followed any of the threads along the way you might try putting Plaquenil in the search engine on the main page and read about other people's journeys. For me it was a life changer.
I hope you have the same positive reaction to Plaq that I've had! I went from feeling soooooo bad all the time -- not able to get out of bed for days at a time, feeling puke-tacious all the time -- to being "almost" normal, or at least, my best imitation of normal. ::)
I've been on it for almost 4 months and I can see the difference and feel much better. Brain fog has almost lifted and I only get fatigue really when I've just over done it.
The one thing my Rheumy told me right from the beginning was to take it right before I go to bed that way I can sleep through any issues I may have. I wake some nights with a lot of gas so I'm glad I get that out of me before I go to work. lol I would hate to be heard at the office as much as I toot at night while sleeping. My poor husband.
He snores, I toot.
Good luck on the plaquenil Bob12, I think you'll find it helps you in many ways.
Try not to think about the side effects too much, as there's really nothing you can do. You are in a position where you're "damned if you do, damned if you don't". If you're progressing without medication, then what are you supposed to do? There aren't many options for us medication wise.
What is your blood work doing that shows you are progressing? Do the blood work markers match what's going on with your symptoms and the way you feel?
What I've told myself about the plaquenil is that I have to stay on it long enough to get "stable", and then determine how to wean down from there. I also keep telling myself that if I can just dodge the worst side effects for 2-3 years, then surely there will be some new medications we can try. That's probably wishful thinking, but hey, without wishful thinking, I'd probably not make it through a day.
Quote from: LisaMarie on January 12, 2012, 12:18:13 PM
I wake some nights with a lot of gas
LisaMarie - do you by chance take your pill with any kind of milk product? I only take Plaquenil in the evening and I have found that when I drink some milk after taking the pill, that I will have gas all night long.
IF I don't drink any milk and just stick to water or tea, I don't have the gassiness.
Maybe it's just me, but I thought I would throw that out there.
Bucky
Thanks for the encouragement everyone; yeah, unfortunately the internet is there and gives sometimes too much info.
In answer to the question, my abnormal immunoglobulins (IgG and IgA) were more so as was my white count lower. Rheumy said not enough for steroid intervention but that coupled with the fatigue and the dryness prompted the recommendation.
I think I delayed in trying, in part, due to denial and thinking that I can restore total health simply though life changes. I am still convinced a healthy diet helps and am committed to following it - just like Venus (lol).
Quote from: Bucky on January 12, 2012, 02:44:42 PM
Quote from: LisaMarie on January 12, 2012, 12:18:13 PM
I wake some nights with a lot of gas
LisaMarie - do you by chance take your pill with any kind of milk product? I only take Plaquenil in the evening and I have found that when I drink some milk after taking the pill, that I will have gas all night long. IF I don't drink any milk and just stick to water or tea, I don't have the gassiness.
Maybe it's just me, but I thought I would throw that out there.
Bucky
Thanks Bucky. I do usually take it with milk. But last night I had juice instead and you are right. I didn't notice the gassiness.
I had good luck taking it at night, few hours after eating, then straight to bed. Anytime any med may cause stomach issues, I find it best
to avoid food. It seems to really help...me anyways. Im finding dairy really bothers me now, so I try to avoid it now at any costs. It
really does cause so much bloating and gas.
I also like taking new things at night because if you dont feel good, then hopefully, you can sleep through it. I would never
take a new medication in the AM ,and then plan a busy day or something. I like to be home incase of any unexpected side effects.
You should not have any problems...compared to some of the other meds Ive tried, like Rituxan, IVIG, Metho, Imuran, Arava, cellcept,
this is pretty tolerable. Just make sure you get your eyes checked every 6 months.
Gursie
Hi Bob :)
My rheumy told me to wean myself onto Plaquenil slowly so that my body adjusted to it. He said to start with half a pill evry other day and to do that for a week before going onto a whole pill every other day. Then a whole pill one day and half a pill the next - you get the idea.
Always take with food. I adjusted well to it. No side effects.
Take care - Scottie :)
I take my plaquenil twice a day. I weaned myself onto also, like Scottie. Lucky for me , the side effects were gas,diareah and sun sensitivity. The stomach issue only lasted a month. The sun sensitivity is now only an issue when it is a hot summer day. Im sure you will do ok.. Please keep us posted.
Luna
Bob, I've been on Plaquenil for 5 years (other things too) and I don't remember any problems. I do believe it helps me and would have to stop it to find out, but have no reason to do so. I am surprised at the number of ppl afraid to start Plaquenil. Probably the internet has something to do with it. I hope you'll do very well. Lucy
Hi Bob
Good luck with the Plaquenil,I have had good results from taking 1 morning and 1 at night.
Cheryl