New to Plaquenil

[Dry1000]

Plaquinel saved my life, it took about 5 months but it reversed almost all my symptoms especially the dry mouth. Stick with it, it is a life saver. Good Luck.

[ashler]

With xerostom?a for nearly three years and I feel its starting to get worst. Has anyone here used Plaquenil only to improve sicca and has it worked?

There's an study from last year were is written that plaquenil didn't work at all in primary sjogren (sicca):

http://jama.jamanetwork.com/Mobile/article.aspx?articleid=1887760

I am asking this to ask my doctor for the best medicine to improve sicca symptoms.

[ashler]

Plaquinel saved my life, it took about 5 months but it reversed almost all my symptoms especially the dry mouth. Stick with it, it is a life saver. Good Luck.

That's great to hear. I wonder if I should ask for this to my doctor. I was also considering ziduvodine (AZT).&

[sixty]

I just saw my 5th rheumy yesterday and really like him.  He explained plaquinel to me and now I think I realize how important it is for my partial recovery.  I've not been able to tolerate it in the past, but I haven't tried very hard, not realizing how much difference it can make.  So I'm on my second day of taking it and yes I'm nauseated but I'm going to stick with it.  I'm just so tired of this fatigue.  I feel like I'm missing my life and sleeping it away.  After not working for 6 years and just getting worse and worse I'm ready for a change for the better.  I hope I can stick with it and I also hope it doesn't take 6 months to make a difference.   Thanks for listening!

[Deb 27]

I was put on plaquenil the first time a few years back. My diagnosis wasn't very clear yet but I had a positive ANA, Sed rate, joint pain and fatigue. I did notice at 3 months that things weren't as dry.  My rheumy told me it took 3 months. I also think that 200 mgs is a fairly low dose.

If your budget can handle it, you might try name brand plaquenil. I found that to be easier on my stomach. I have since been able to tolerate the generic.

And some people do go on steroids if they can tolerate them when things get too bad. Good luck to you!

[Poppy]

Have to agree with you Deb about changing from Generic form of Hydroxy to brand name Plaquenil. I had really bad a gastric problems but find that Plaquenil has been much beter.

[way2dry]

There was a study in 2014, "Effects of Hydroxychloroquinine on Symptomatic Improvement in Primary Sjogrens Syndrome" that concluded that the use of it compared with placebo did not improve symptoms during 24 weeks of treatment.  They recommended further studies to evaluate longer term use.

I tried the generic version of plaquinil and had to stop because it tore up my stomach.  It did nothing for my dryness which has been rapidly getting worse.

If you take it, I hope you're one of the lucky ones it seems to work for.

[drylady]

Hi Ashler. Plaquenil has helped me with dry eyes and mouth. I feel less inflamed on it.

[itzmejudy]

Ashler, I am new to Plaquenil started 1 month ago 200mg 2 times a day.I have had neuropathy (numbness and pain in legs and hands) since 2007. I was given Neurontin(Gabapentin) and took it until 5 months ago because I thought it wasn't doing anything. I was wrong the pain and spasms got worse so I started them again. I still have dry eyes,mouth,nose, skin and every other nook and cranny. I hate the eye drops they only last 20 mins and I am not going to do drops every 20 mins. I am waiting for Restasis approval from Ins. I hope that works better. It is to early to say if Plaquenil is helping. I am also always tired and when I am online reading information or playing a game I start t doze off. All this plus getting old is not fun LOL. Ashler just be patient (don't you hate when people say that LOL) and know nothing is a cure it is just to make it more tolerable. I have 4 autoimmune diseases that I know of and I didn't know what autoimmune was until 3 yrs ago but it explains the 25 yrs of health problems that everyone thought was in my head. I wish you the best.

[irish]

Many people don't have luck with the plaquenil and many do have luck. It should not be dismissed lightly. It is an antiparasitic drug that is used to treat malaria and has been on the market for many years.

When being used years ago patients with inflammatory (RA, etc) diseases found that their symptoms were decreasing. It has been used for treatment of lupus, RA and other autoimmune/inflammatory diseases. It is not an immune suppressant. It has been reported to decrease pain from inflammatory diseases, decrease fatigue and some people do find that their dryness decreases.

I went on it about 5 years ago and I have found that I have to quit taking it when I am on antibiotics because I seem to get increase in agitation, dizziness, etc. When I quit the plqueil for there couple of weeks I was surprised to find that the cartiledge that attaches my nose to my palate becomes very sore and if I even wiggle the end of my nose I have pain. My ENT informed me that the plaquenil was helping that inflammatory issue. It is amazing how it improves things.

I feel better on it and ache less also--no change in dryness, but I didn't expect that. Just having something that helps and improves daily life is worth it. Plaquenil is now noted to be the first choice of treatment for Sjogrens. Thankfully, some of the docs are starting to catch on to this. I still take the generic so don't know about the trade name. I always take it with food and that does help with the nausea. It takes time for the body to get used to it.Some people start out with 200 mgm a day til they get used to it and then increase the dose. Good luck to all. Irish

[Pbrain]

I've had bouts of "angiodema"! I researched and that was the closest description if found, too. Usually my eyelids would get puffy, sometimes down to my lips-when I woke up. By the time I could've been seen by a doc, it was always gone (so, a few hours into the day). Very bizarre! Around that time, I was also having trunk rash. My immune system was being very reactive for some reason. BUT specifically about the face swelling, I think it may have been related to cheap grocery store peanut shells/peanuts. While I've never been formally diagnosed with any allergy (other than meds), I noticed that I was puffing up after having eaten from those bags. I loved sucking on the whole salty peanut shells til they were soggy, then eating the nuts (while spitting out the shells). When I stopped eating them (ALL peanuts, because I wasn't sure), the face swelling stopped. In hindsite...i wonder if the shells were moldy. I'm very sensitive to mold in the air so it's logical that ingesting mild would not have been good! 

And...along those lines..fwiw I was also allergic to plaquenil. Like the other drug I'm allergic to (lamictal), I started getting a trunk rash and had to stop. Stupid immune system. Good luck!

[Scottietottie]

Hi 

A tip for anyone starting on Plaquenil - or who find it hard to tolerate.

Start slowly. Wean onto it. I was told this by my rheumy. Start with half a tablet every second day. Do this for a week. Increase to half a tablet every day. Another week. A full tablet one day - half a tablet the next etc etc. You get the picture. It takes what seems like ages to get on the full dose but its a drug that takes ages to work anyway.

Always take with food.

Weaning on slowly may stop the nausea developing as the body adjusts slowly. Good luck!

Take care - Scottie 

[irish]

Anyone who has swelling or a puffiness of the face, nose area should really get to the doctor and get a diagnosis. If it is angioedema you need to have a plan of action because this can spread fast into ones airway causing emergency situations.

The reasons for angioedema are hard to figure out but it is almost like an allergic reaction without having a true allergy. I have known people who did well on daily antihistamine therapy that kept this in check. I think that it is related to a histamine release in the body without the allergic trigger. May be wrong, but seems to be something like that. Irish