Hi All,

Had a follow up appointment with my derm this week. He addministered the shots to my patchy shots as per usual, because why the hell not at this point. The spots are still active but I'm not ready to give up on treatment yet especially with my health insurance, it is actually quite affordable for me. Any how he prescribed Plaquenil to help, which from what he told me and what I've read is a drug originally intended to prevent/treat maleria, but has shown success in auto immune diseases. He did say that I should get my eyes checked when on this medication but so far I haven't noticed any vision problems. However, a listed side effect is Nausia/Diziness. Holy Moly when I took it yesterday I felt like I drank half a bottle of NyQuil, while I had a bad hangover or something. Sleepy and Nauseous. I realized I had taken it on an empty stomach so today I took it after eating breakfast. I am feeling sleepy and a little sick but not as much as yesterday. Has anyone tried this medication? What did you experience? I know we are not Doctors here but I feel like I would just get a generic response from my doctor as I imagine he has never taken the drug personally. Thanks for your input!

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Katelyn,

At first I was just trying anything to stop the hair loss. It took me a while to come to grips with it- it became like an obsession, such a distraction. But later understanding that the meds control the symptoms, I don't think I can stop taking them.

I wish I knew the answer to this question: If you let the disease run its course and take all the hair, do the symptoms stop? If so, maybe then I could get off the meds to speed it up and just get on with my life bald. I'm so over hair (today, anyway).
I have been on Plaquenil for 6 weeks and so far well tolerated. I also feel it has slowed down the shedding and inflamation. I will be getting blood work done every 6 weeks and eye exams every six months. I feel confidant that this drug will help. By feeling confident it has taken away a lot of the anxiety I have been having since being diagnosed.

Hi Katelyn.

In response to your question i was on Hydroxychloroquine for 9 months with no success! :( i did feel a little nausea now and again but nothing else, but i also made sure not to take it on an empty stomache as i think that makes the sickness worse.

It's very frustrating to say the least, but my Alopecia just progressed i'm pretty upset as i really don't think that anything does stop it.

I'm now not on anything and my Alopecia is just getting worse, but i am reluctant to take anything as the steroid injections did nothing either, or the topical creams/lotions just made my scalp burn like mad!! and my consultant now want's to put me on mofetil which i know is a serious drug that suppresses the immune system and has adverse serious side affects so i have been, told like cancer and pneumonia so i really do not wish to end up with a more serious health condition, i'm not saying i would but i may and the info i have read on this particular drug is not good :((

So i am now at my wits end, horrible situation but i just try and remain strong.

Good luck Katelyn on your journey x

P.S does anyone else have any info/input on this particular drug "mofetil"? be interesting to hear.

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