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My Rheumatologist is letting me try Mepacrine!

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  • My Rheumatologist is letting me try Mepacrine!

    So i'm basically one of the luckiest guys in the world today. Called my college and they are letting me extend my deferment, which I thought was impossible. My rheum then called about 10 minutes later saying that instead of the chloroquine, she was going to put me on mepacrine instead. Apparently my insurance didn't want to approve of the chloroquine, so she just gave up.

    I've wanted to try mepacrine for the longest time. Ever since I read about halfpipe, lamarrs, and a few other stories about it..I am completely stoked. I know that it isn't guaranteed to work, but I can't help but hoping that it will.

    For those of you who don't know my story, I am one of the accutane induced flushers. I'm not sure that it should be classified as rosacea or something else, but it closely imitates the redness and flushing that is associated with rosacea. Any room above 75 degrees in temperature is a nono. If I'm not in front of a fan I'm completely red. If I go into ANY social situation and am not in front of a fan, I flush. Any amount of physical work makes me flush. Most of you guys know the triggers, so I won't continue on.

    I went to my first derm and she put me on Finacea. Didn't help. We then tried 3 IPLs. No luck (made it a bit worse, actually). Then went to a second derm who put me on elidel. Made my skin at least twice as bad as it was before. I was now constantly red, even when I woke up in the middle of night. It became hard to sleep because I was so distracted by the pain I had on my face. It was a ridiculous treatment to try. Also tried clonidine. I gained 10 pounds in 2 weeks, and I was constantly asleep. This was also at the lowest dose cut in half. I dont know how i'd handle a higher dose. It did help a bit with the flushing though.

    I had also gone on doxycycline earlier in the year and it didn't do much. Basically, I had tried all normal treatments for rosacea. My derm said she couldn't help me anymore, and reccomended I go to a university to see if I could become part of a study. I then ignored her advice and went to a rheumatologist about possible cutaneous lupus. Was tested on a full autoimmune panel, along with my liver, kidney, thyroid, glucose levels, etc. I am perfectly healthy, apparently. A bit low on the Vit D and was slightly low on some autoimmune thing, but not enough to diagnose lupus.

    I then practically begged her to let me try mepacrine. She kinda laughed at first, but then realized I was serious. She decided to try the chloroquine instead (a sister medication, similar to plaquenil). I was ecstatic that she would even try that, so I agreed. Went and saw a eye doctor to get my retina's checked out as a baseline, and they are pristine (Doctor's wording). Got all set and then called the pharmacy only to get told that my insurance wouldn't cover it. Made a ton of calls and, basically, was put on atabrine instead. Holy dang, the one medicine I wanted..they were finally putting me on it. Just got a call an hour ago from the compounding pharmacy, it's going to be done on Wednesday or Thursday.

    So basically, I had the perfect day. Got the medication I wanted and I'll be able to go back to college. I'm going to keep a log of my progress so that people can judge whether or not this would be a good treatment for them.

    Here's hoping guys, wish me luck. Sorry for the ramble and bad English, I'm way too excited to type correctly at the moment!

  • #2
    Awesome!
    Shantelle

    31 Year old female from NZ

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    • #3
      VERY HAPPY FOR YOU! I pray continued success! Yes please keep us updated, for all our sakes I hope you start to see positive results soon!

      Alba
      using elidel at night, taking atelenol, had 2 vbeam laser treatments, 46 year old female

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      • #4
        Day 1

        OH MAN. I finally took my first danged pill. AND MY FACE IS PERFECT NOW.

        But really. Took my first pill. Obviously can't feel any effects yet. I really want to take another one, but I heard overdosing is a bad thing, so I won't.

        Haha..sorry for the levity. Just excited. Hopefully this stuff works!

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        • #5
          Just go slow with it, and good luck! Wish it had worked for me (Im just regular Rosacea though, never took accutane).
          Just take it slow, make sure also to go for your blood test checkup (i forget exactly what they were looking for, but something with the eyes).

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          • #6
            If you don't mind, I have a few questions about your mepacrine use. How long did you take it for, and at what kind of dosage? Also, what type of rosacea do you have? Flushing/redness or the pimply type? Or a combo of both I suppose, as I know some people get that.

            Thanks!

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            • #7
              Day 3

              It's been 70 or so hours since I took my first pill, so obviously I can't be expectin much. No change as of yet. I'm a bit nervous it may take a while, as I am a big person at 6'3 230 pounds. I don't know if this medicine is changed by weight or not. Anyway. No headaches or stomachaches as of yet.

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              • #8
                Oh man it`s been so long (a year) that i honestly can`t remember the dosages...i know i have posts in that old mepacrine topic though. I was on it for around 4 months. I have p&ps, redness and flushing.

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                • #9
                  Hm. And after 4 whole months you didn't see any redness/flushing improvement? That's a bit discouraging!

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                  • #10
                    Day 5

                    So it's been about... 120 hours or so since my first pill. As far as general feeling of my body, I can't even tell I'm on the stuff. When I went on doxy/tetra/mono cycline, I could always tell I was on it. Same with accutane. My body just felt different. Maybe I'm expecting too much after 5 days.

                    Bit of encouraging news though, went to church for 2 hours today and only got to about 10-20% of a flush. Usually I get to around 50 or 75. However, I have a feeling that this was more due to the weather than anything..as it's finally turning to Winter down here in So-Cal. There was about a 20 degree drop from this Sunday to the last. So, who knows.

                    Still no digestion or head problems. No real change as far as base redness, but I have a feeling that that won't change until after I've stopped flushing for a few months because if I understand the disease correctly, every time you flush the redness gets worse..or at least maintains its redness.

                    Anyway, I'll be back in 5 days for the 10 day update. That's the earliest I've ever seen someone reporting success with this drug, so we shall see.

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                    • #11
                      Day 10

                      Nothing really to report now either. My body still feels the same..although I do get random onset headaches. Also, my digestive system is acting a bit weird. If anyone could give me specifics as to what type of headaches you were supposed to get/what type of stomach issues then I'd be able to say for sure. For now, it's very possible that it's just my body.

                      As far as flushing..it can definitely still happen. Went to the theatre and got pretty hot.

                      Will update on day 15!

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                      • #12
                        Day 15

                        I can say for certain that my skin is less red than before and that I don't flush as easily. However, the recent drop in temperatures could easily be the cause of this.

                        Something to note as well is that I'm currently taking 3,000 IU's of D3 because my Vit D level was a few points below normal. I'm probably going to up it to 5,000 in the next few weeks and then see if I can tell that I'm on it.

                        Gonna check back in at the month mark. Merry Christmas everyone!

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                        • #13
                          Day 30

                          Alright guys, it's been a while! I've kind of been just talking to myself here for the past few weeks. I hope that it will at least help one person. If not, it's nice to see my thoughts in an easy to read and organized fashion. Anyway.

                          My face is dealing so much better with heat in general. I can now actually lean down to pick something up without my face starting to burn. I can work out in the yard or indoors and the sweat will usually make it so I don't flush at all. In fact, my face will oftentimes be cool to the touch when I'm sweating. Now, I don't know if this is the case for heavy duty work. I've only really tested light and medium duty type of stuff.

                          Residual redness is still very high. I'm really hoping that this goes down in the months to follow. I know that each time you flush you get redder, so the opposite should hold true. Time will tell. If it's not going away in 3 or so months I'm considering buying an RLT unit. Maybe it will help.

                          I switched from cetaphil cleanser to born to be mild. I've been on cetaphil for quite some time and was just curious if it was causing issues. I really don't see a difference between the two. I'm still getting the annoying mini pimples around the mouth. I actually just ordered a 150 dollar electric razor that is supposed to be excellent for sensitive skin. Who knows, maybe my razor is causing all of this. If not I can always return it!

                          As far as sun sensitivity goes, I really have no idea. It's winter here and the sun is gone.

                          So yes. The mepacrine has helped rather dramatically for my skin. My skin has probably turned around to late college days or early break days, about 8 months ago. In that 8 months I underwent numerous treatments that made my skin worse. So I think I'm through the worst of it. Best part is it's only really started helping in the past 2 weeks. Now that it's fully built up in my system I'm way excited to see how it's going to work.

                          Side effects have been minimal. It's actually helped pretty dramatically with fatigue. I was always one of the guys that slept the most and was still the most tired. Now I'm not getting really tired until about 2. I need to adjust my sleeping schedule. I thought that the energy boost associated with mepacrine would be kind of a spike in energy. It's more of an evening out of your energy. I don't feel tired throughout the day and then it just hits me that I'm finally tired. It's definitely changed the way I sleep/feel during the day.

                          No nausea. No yellow skin.

                          I have had a stomach ache for the past..2 and a half days now. It's not the usual "I ate way too much food and I feel horrible" type of ache. It's more of the pains that you get when you're hungry. The pain is generally constant but it can spike at times, especially when I move in a specific direction. It's not a huge deal but I am hoping that it goes away soon.

                          Going to update once a month for as long as I can remember. I just got a renewel on my prescription for the next 3 months, wish me luck!

                          Oh, and I stopped the D3. Not sure what I was thinking when I started it. I want to know that the mepacrine is helping. The D3 could even make it worse, so I'm off it for now.

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                          • #14
                            Heya

                            Awesome news! Keep us updated!

                            Going off thread 'views' you can be assurred that people are reading this thread even though they might not post a response.
                            Shantelle

                            31 Year old female from NZ

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                            • #15
                              Haha..fair enough. So how goes the Rosacea battle with you nowadays? I could have sworn I read somewhere that you have gone into remission in all of your symptoms!

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