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Lizzie2
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Autoimmune Treatments and CH
« on: Jul 25th, 2006, 6:29pm » |
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Not sure if anyone has posted on this yet as I haven't been on the boards here as much as I used to be. But at my last neuro appt, my neuro mentioned to me that there has been anecdotal evidence that relates certain treatments for autoimmune diseases with help in treating CH. He told me that there have been patients with AI diseases such as myesthenia gravis who have undergone plasmapheresis and had simultaneous relief from their CH attacks. I haven't found anything written on the web yet, but I'll continue searching.
At any rate, the reason I'm posting about this is because I'm on methotrexate to treat suspected rheumatoid arthritis and it has done a number on both my CH and chronic migraine. My chronic migraine resides at about a level 3 baseline now, which has not happened with over 100 drugs, including 7 hospitalizations in 5 years. This is miraculous. I almost feel like crying because I sort of have my life back. And with the CH - I still get 1-2x/day, but sometimes go for almost a week without them and just have them much more sporadically. Maybe it's too soon to tell, but in the last 2 weeks, I have noted marked improvement in both headache types while on the methotrexate to treat an autoimmune condition. My neuro had wondered if it would help the CH, and I certainly wondered if it would help my migraine type, and it seems to be helping both.
I was afraid to breathe a word for fear the beast would get wind and come clobber my brain. But I've started breathing a few words about it over the last few days...and I just can't get over what a reduction in pain I've experienced! Who knows... while it may not work for everyone, this is sure as hell doing something for me...when nothing has helped like this in 5+ years. I feel like I'm living a new life! 
Hugz,
Carrie 
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floridian
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Re: Autoimmune Treatments and CH
« Reply #1 on: Jul 25th, 2006, 6:37pm » |
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Glad to hear you are getting a break. There has been some research on the immune/autoimmune component of clusters, but it has been theoretical, not applied. Of course, prednisone is also a 'great' supressor of the immune system.
One problem I see if people start using methotrexate is that there is a tendency to call it 'trex' which will lead to major confusion. On a more serioius note, lots of psoriasis patients I know take the other trex, and it does have the potential for side effects, so read up before you ask the good doctor for a script, kiddies! (I know Carrie did her homework before this one!)
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| « Last Edit: Jul 25th, 2006, 6:40pm by floridian » |
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Lizzie2
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Re: Autoimmune Treatments and CH
« Reply #2 on: Jul 25th, 2006, 6:43pm » |
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Funny, but I didn't start having psoriasis (scalp) until after starting the MTX. But yet, I had it when I was a young kid - don't remember what age, but I lived in St. Louis, so it was sometime between age 5 and 9. And I've had it the past few months while on the MTX, which MTX is supposed to treat... That kinda backfired!
The reason I thought the MTX would help my chronic migraine is that it is New Daily Persistent Headache, and the onset of that sounds identical to the onset of so many AI diseases. I didn't realize the CH might benefit from it until more recently. This is definitely strange for me!
I can see your point there... I can't take Trex, but I can take Trex... Hmmm....  (Oh yeah...pred was a blessing for me, until I got AVN... How bout that Floyd Landis! On the MTX, the only side effects I've had are some nausea, fatigue, and possibly the scalp stuff...but even my anemia isn't worse than usual. I did have a fever the other night, but my white count is still good. On the lower doses, MTX is much safer than it's side effect profile would have most to believe...
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Lizzie2
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Re: Autoimmune Treatments and CH
« Reply #3 on: Jul 25th, 2006, 6:45pm » |
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Oh yes, too add: methotrexate probably isn't for everybody. I did do my homework on this one and spent an entire week researching it before going ahead to take it...for RA, before I knew it would have any effect on headaches. My mom and several other family members were adamantly against my taking it, but I did it anyway. I'm glad I did now!! Most of the side effects for methotrexate occur on larger doses as used for chemotherapy, but it can have a few doozies even on low doses. Frequent lab monitoring is a MUST....blood labs, that is.
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E-Double
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Re: Autoimmune Treatments and CH
« Reply #4 on: Jul 25th, 2006, 10:08pm » |
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awesome!
may it continue and hopes of minimal to no side effexts my dear!!!!
hugs!
MeEx2
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Lizzie2
CH.com Alumnus
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"L'Chaim"~Hebre w Toast~"To Life"
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Re: Autoimmune Treatments and CH
« Reply #5 on: Jul 25th, 2006, 10:59pm » |
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Thanks E! Nights like tonight, the migraine is worse...of course because I made this post earlier! But...I'm not afraid. It is my hope that tomorrow it will return to a lower baseline and that I won't need a triptan or two to survive my work day! We'll see...
Hugz,
Lx2
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starlight
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Re: Autoimmune Treatments and CH
« Reply #6 on: Jul 26th, 2006, 6:24pm » |
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Lizzie,
I am glad you are getting relief and that you have your life back from both migraines and CH!!! Take care, Starlight
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