Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Tim on October 13, 2011, 06:02:03 PM

Title: 2nd day on Plaquenil
Post by: Tim on October 13, 2011, 06:02:03 PM
Well had my appointment on Tuesday. Doctor has diagnosed me with Sjogrens with the positive bloodwork, symptoms and negative lip biopsy. He would like for me to have the biopsy slides read by a Pathologist at the hospital where they practice. I had the biopsy done at a local hospital for convenience. Started on Plaquenil 200mg twice daily, so far some headaches and some bad nausea even with food. He said on average people see improvement in about 6 to 8 weeks.


Tim
Title: Re: 2nd day on Plaquenil
Post by: Scottietottie on October 13, 2011, 06:21:28 PM
Hi Tim  :)

When I was put on Plaquenil I was told to taper on to the full dose slowly. I started with half a 200mg tablet every other day and built up from there over about 4 weeks. Taking with food is good.

Take care - Scottie  :)
Title: Re: 2nd day on Plaquenil
Post by: LisaMarie on October 13, 2011, 06:51:47 PM
I started the generic version on Tuesday.  My doctor told me that he would recommend that I take it before going to bed.  That way if I had any of the side effects, I would sleep through them.  That's been working for me.  I had headaches before taking it so I wouldn't know if the headaches I have today are from it or not. 

Read in the material on the drug that it may take 4 weeks to really see a difference. 

The only thing I really notice is with the restasis....puffy eyes in the morning.  But, I can handle that too.  Nothing like a warm wash cloth for about 5 minutes to make the eyes feel good and rested.
Title: Re: 2nd day on Plaquenil
Post by: Carebear on October 13, 2011, 06:58:45 PM
Hi Tim,

It may take up to three months to feel an improvement, so don't feel discouraged is it takes a while.  I hope it improves your quality of life.  ;)
Title: Re: 2nd day on Plaquenil
Post by: mshistory on October 13, 2011, 07:25:02 PM
Hi Tim,

It definitely took longer than four weeks for me to notice any difference with 400 mg of Plaquenil daily. It took about 3 months before it started to help with the joint pain. So far, no luck with the fatigue unfortunately. My rheumy did say that some people who experience a lot of nausea with the generic Plaquenil tend to do better with the name brand (it has some kind of enteric coating maybe?)

Hope you start feeling better!
Title: Re: 2nd day on Plaquenil
Post by: smallfry on October 13, 2011, 07:41:02 PM
Hi Tim
I am in my second week on plaquenil not too much of a change as yet, but I have noticed that I have lost my appetite witch is a bonus for me as i need to loose a few kilos.
From what i have read like everyone else says it takes awhile, so just hang in there keep us posted on how you are doing, Thinking of you,
Cheryl
Title: Re: 2nd day on Plaquenil
Post by: Meld256 on October 13, 2011, 09:43:28 PM
Hi Tim,

I'm glad that you have answers and are being treated.  Hopefully, the headaches and nausea will subside in a week or two.  Those side effects can be temporary, so hang in there.

If you're not taking the Plaquenil with a meal, a snack with some carbohydrate seems to help some of us. Crackers with peanut butter, small piece of bread, bowl of cereal, etc.

May I ask how you're feeling about the diagnosis?  Some relief, and /or being a little overwhelmed is very natural. Now that you have an answer you have some power over treatment and hopefully will be seeing some good benefits.
Take care,
Melinda
Title: Re: 2nd day on Plaquenil
Post by: irish on October 13, 2011, 09:58:40 PM
I wish the docs would give the lower dosages when starting the plaquenil. It would make it much easier for people to adjust. I started the plaquenil 3 weeks ago and my doc put me on 200 mgm every day. I take it at noon after my meal and drink a lot of water.

I have been having some anxiety and occasional nausea but it isn't bad. I did have a couple of days with the colon issues and a lot of gas. Actually, I have had much less problem than I expected. I go for my infusion next week and can talk to the nurses about the plaquenl and find out any new info. I can also inform them of how I am getting along.

I have to add that I have noticed an improvement in one symptom and if that is the only thing that it helps I will be elated. I think I would call and ask your doc if you could back down to 200 mgm once a day and then taper up slowly. I would bet that it takes at least 4 weeks to adjust to the lower dose. Good luck to all. Irish ;D
Title: Re: 2nd day on Plaquenil
Post by: engy on October 14, 2011, 04:07:32 AM
I started off at a lower dose but after a few weeks I was taking 400 a day. When I took it at night I
had nightmares. Now I take one with breakfast & one with lunch & have no problems.

It took me 3 months to feel any improvements at all. The first was an increase in saliva & tears. It took 6 months
to really help the fatigue. I am now in the 7th month & feel even better than last month so it does take time.

Good Luck, give it a chance as I waited a 1 1/2 years after my first rhuemy suggested it. I got another rhuemy
that I trusted & now wished I would have listened in the first place.

Carie
Title: Re: 2nd day on Plaquenil
Post by: A66eyroad on October 14, 2011, 05:44:53 AM
Tim, I'm so glad that your doctor is treating you for Sjogren's even with a neg lip biopsy. I was really fearful for you.

I take 400 mg with my supper --- I actually take it along with a bite of food in the middle of my meal. This way I can be certain it'll travel all the way down to my stomach without getting stuck since I have alot of dryness in my esophagus.

I haven't noticed any negative effects from the medicine at all. It was easily three months before I noticed any real positive difference in my symptoms, but I've been on it for more than a year now and I can tell a difference if I miss even one dose.

Good luck to you!