Starting Plaquenil

[Blomst]

Hi all,

I'm starting on Plaquenil tomorrow and I'd like some input on what to expect. I'm already on Methotrexate. The mtx hasn't really had much effect on my two main symptoms, fatigue and inflammation in my hip joint, but blood tests indicate that it is doing some good (hemoglobin gone up into the normal range and SR and CRP gone down into the normal range), so now I'll be on both mtx and Plaquenil for a while at least.

My rheumatologist is wonderful and I do feel well informed, but I'd just like to hear some of your experiences as well. Did anyone here get significant relief from fatigue and/or joint pain after already having tried mtx? And also, how bad is this sun sensitivity thing? I am Caucasian, blond and naturally light skinned but I do get quite tan in the summer and have never had much issues with sunburns (of course I've gotten burnt from time to time if I haven't worn sunscreen and have been out in the sun for a long time, but my tolerance for sun has always been quite high). I'm going to Italy in a week and will stay there until Christmas, so I'm wondering what to expect. I know I'll have to wear sunscreen if I'm going to be out in the sun for prolonged periods, but do I for example need to put on sunscreen just to go for a quick trip to the grocery store? How high a factor do I need to use? Etc etc. And do I need to wear sun glasses at all times when in the sun? I know that this probably varies a bit from person to person and that I'll probably just have to try and err a little bit, but I'd still love to hear your experiences!!

[bloodless]

I found it to be helpful. No problems from the drug either. I always forget sunscreen, so I guess I can't help you there. Just remember it takes like while before it starts working. I hope it helps you too.

[Anastasia]

Hi Blomst,
I have been on Plaquenil since the spring.  I have had no problems with it and I believe it has helped with fatigue and achiness.  It is very slow acting, so don't expect quick results!  I have noticed that my hair is shedding a little more than normal over the past few weeks.  I believe that occurs sometimes.
Good luck!
Anastasia

[Blomst]

Thanks for your replies! So it seems the sun sensitivity thing is not as bad as I feared Would still love to hear from more people though!

[Jenny]

We have a boat and live on the river in Florida. Consequently, I am in the sun a lot. I am pretty good about using sunscreen, but I don't seem to burn any more than my friends.

[Liz D.]

Hi Blomst,

Plaquenil definitely helped me but took a few months.  But I'm not on mtx.  I only take that plus an anti inflammatory .  I do notice hair thinning though.  Also, the sun sensitivity didn't start with me until I was on it for years!  Now I have to have sunscreen on all the time, even for little things.  Very discouraging but don't want to go off of it because I know it helps!

Liz D.

[Carolyn]

I'm not taking anything but my hair is thinning sooooo bad, it is horrible. Thats not the least of my problems, but it is a stressor. The worst thing is the horrible cough which is worse than dry eyes,  fungal infections  among other things.  Carolyn

[SjoGirl]

Not intending to frighten you, just sharing my story. I was on Plaquenil then had MTX added due to muscle and joint pain. The MTX had some effect on the levels of Plaquenil in my blood, taking it to toxic levels. Thankfully, I had an exceptional hematologist at the time who identified this issue by asking me many good questions. She called my then rheumy from her office while I was there and I was told to stop taking MTX asap.

Now, I will say this, I also found that I could not tolerate Plaquenil, tried it twice and after six months could not deal with the side effects. In my case those included mycolonus (like nighttime seizures), terrible ring in my ears, headaches and more.

I am very med sensitive so you may have a better go of it.  Plaquenil is worth trying and did me a lot of good for at least a short while.

Good luck.

[Blomst]

Thanks for your replies! SjoGirl, could it be the Mtx that you had a reaction to, not Plaquenil? I've been on Mtx for some months now and all my blood work is fine. One week in on Plaquenil and I have no side effects so far, as far as I can tell. But from now on I'll only be taking blood tests monthly (instead of every other week), so I guess I should pay some attention to signs of something being off... Ahh I just hate this whole thing. Like I said, I'm leaving for a semester abroad in two days and the timing is just so bad. It would have been so much better if things were a bit more "settled" before I left. But there's nothing I can do about that, so I guess I'll just have to hope for the best!

[kmhcpt]

Been on it about a year now.  Was not thrilled about taking it.  I guess I was in denial a bit about having a autoimmune disease.  I started with the autoimmune protocol diet that really calmed things down.  My Rheumy prescribed it at my first visit even though I was doing better.   I had an elevated ANA but no anti-bodies at all.  He still said I have Sjogrens or lupus.  He wanted to be proactive.  Thank goodness I found a good one right off the bat.   It has helped a lot.  I continue to work two jobs and am still working out.  A year ago I was missing work and was not active.   It helped with my dry mouth and eyes as well.   If I don't take it with a full meal I get some stomach issues.  Had very vivid dreams when I first started taking it as well.    Other than that it has been great. 

[susanep]

I've been on the plaquenal for several years, and it helps me to be mobile. I am suppose to be on the pills twice daily, but could never tolerate the stomach side effects. After all these years I decided to try the second pill the other day, and it still made me very sick.

susanep