Plaquenil...for those who can't take it or just don't

[Rose G]

I just stopped brand plaquenil after 7+ months.  I am very disappointed with my results.  I wanted so much for this to make me feel better, but it just didn't, at least not enough to combat the side effects I have.

Only my right knee feels better on this.  It did nothing for left knee, hip pain, other joint issues, not with stomach problems and didn't help with the dry issues, which I know only some get help for.  It makes me sad and upset for myself (certainly not for those who do) when I read how much better so many do feel with it.  I know there are some who didn't/don't or can't take it for some reasons, but are there others that it didn't help?

The bad effects for me was worsening diarrhea (I already had issues with that for many years) and extreme hair loss.  After all these months, neither of those improved.  If the plaquenil really helped I would of course, try to live with these, but it just didn't.  I will be making a call to rheumy to get an appointment but wanted to hear from others in my same situation.

I was also very worried that I couldn't take it because so many talked about the "slowing of the progression" but have noticed now that many are saying that may not be so.  My rheumy does not believe that it does, just that it helps with SS's ills.

Besides not getting much needed relief with the plaquenil, I also got none from prednisone. I do not have positive blood work for SS, but positive ANA and dry eyes, mouth and gastroparisis...etc.  Since those meds did not help, I wonder....could it be something else???
I have had all the usual and unusual blood work, positive ANA was only one abnormal.......

[hootyhu1]

Rose,
Sorry the Plaq. didnt work well for you. The Prednisone didn't either? I must say that I felt great after taking the Plaq. I was on it for 8 months. I stopped taking it a month ago because of my pregnancy (I know it is safe to take but I thought since I felt great I would try it with out it for a while) I will say that I have very mild dryness but it really help my joint pain.  I hope you are able to find something that works for you! -hootyhu

[jasonsmith]

How common is it to get diarrhea from Plaquenil?

I've got chronic diarrhea and would hate to get more of it if on Plaquenil.

[Rose G]

Jason, I also already had a problem with diarrhea for 30 years or so ever since I had my gallbladder out (they now call it bile salts diarrhea) I have tried a powder med for cholesterol to help but it doesn't much.  It seems it is a little different (worse) since the plaquenil.

I don't know how many people get diarrhea as a side effect of plaquenil, but it is listed as one.  I have read on here that many that had constipation were happy because the plaquenil helped them be more regular...so it would seem to make sense that it would not be welcomed by any (like me) that already had diarrhea as an issue.

[Jozee]

I have problems with diarrhea and when I took Plaquenil it got severely worse. I could be standing there having a conversation and poof...I'd go. No warning not self control. It was awful. I quit taking it and 3 days later I was back to my old self of controlled diarrhea.

I also had severe muscle aches. As if I'd walked 52 miles.

I was really disappointed. I had hoped this medicine would be the answer to my problems.

But...I am so thankful that it works for so many others. If some of us get relief then I'm at least glad for them.

[Calli66]

I stopped after 2 years. Didn't get diarrhea, but plaquenil upset my digestion big time. Every kind of food gave me terrible gas and bloating. I felt like I wasn't getting proper nutrition.

Calli

[gold55]

I read somewhere that they are finding that Plaquenil lowers cholesterol at the same time slowing the progression of disease.  Has anyone read anything about Plaquenil and cholesterol?  thanks

[irish]

It does not surprise me that people with diarrhea issues have the problem escalate when on plauqenil. That is more or less to be expected I would think.

I take lithobid and I found out the hard way that if I take it a couple of hours before the plaquenil I end up having to find a bathroom quick a couple of hours later. I have had good luck taking my plaquenil at noon right after I eat with a good amount of water.

I take my lithobid aboaut 4-5 hours later and it doesn't seem to irritate my gut as much. WE are all so different and there are a lot of ways to try and avoid this problem . I do think that the gut stuff goes away slowly but would think that anyone with IBS, etc would not be that lucky. Just my opinion.

I have learned that the gas that I have is definitely a lot worse. I will have to be really aware of this when I have my visit with Queen Elizabeth. LoL Irish

[Narablueeyes]

It does not surprise me that people with diarrhea issues have the problem escalate when on plauqenil. That is more or less to be expected I would think.

I take lithobid and I found out the hard way that if I take it a couple of hours before the plaquenil I end up having to find a bathroom quick a couple of hours later. I have had good luck taking my plaquenil at noon right after I eat with a good amount of water.

I take my lithobid aboaut 4-5 hours later and it doesn't seem to irritate my gut as much. WE are all so different and there are a lot of ways to try and avoid this problem . I do think that the gut stuff goes away slowly but would think that anyone with IBS, etc would not be that lucky. Just my opinion.

I have learned that the gas that I have is definitely a lot worse. I will have to be really aware of this when I have my visit with Queen Elizabeth. LoL Irish

Just remember to breathe through your curtsey.  Don't hold your breath!!  :-D

[Carebear]

Queen Elizabeth, ha ha!  You crack me up, Irish! 

[needahammock]

Sorry to hear you had such a hard time while on Plaquenil.

I also had a hard time with Plaquenil, there's no way I was going to continue feeling so dizzy when I have to drive to and from work, the kids to school and so on. Among other symptoms, such as nausea, stomach feeling funny, reaction to some sort of dairy ingredient, and so on. I was taking the generic brand though....

I'm looking for a natural alternative to slow the progress and feel better.

[irish]

I guess I find it strange that the doctors don't just decrease the starting dose for the plaquenil. It would make it much easier for people to tolerate and probably less people would quit the drug. Irish

[deeindiana]

Rose G., I have problems with Plaquenil too but found that a lower dosage (200mg/day) made it much more tolerable. Since my rheummy says that a little is better than none at all, we're both content with this dose.

I've only taken prednisone once (ENT prescribed it for a throat irritation) and thought I'd die! I was deathly sick -- plus it did nothing to help the throat irritation. My ENT seemed shocked that it didn't work. But when I told my rheummy, he said, "Of course it didn't. Steroids aren't the magic answer for autoimmune disease." I didn't think to ask him to explain himself.

I hope you can find a way to manage your pain. Take care of yourself!
Deb