@maize Welcome to Mayo Clinic Connect! I’m currently on mycophenolic acid for about 2 years but haven’t noticed and hair loss. I was on mychophenelate mofitil before that and I had serious diarrhea for about 4 months before the doctor could change drugs. I have Clippers, a rather new AD that just showed up long enough for me to catch it. It causes lesions on the brain. What AD do you have?
Was diagnosed Nov 2023. I was sent to Boston Mass General as my GI dr. hadn't seen biopsy report like mine; too many possible causes; shrinking bile duct, bridging fibrosis, lupus, etc. A panel met and concluded autoimmune hepatitis. Only thing certain is that my immune system is attacking my liver. Was given mychophenelate mofitil and in 2 mos. had terrible GI issues and felt like I had an elephant sitting on my chest. Feb 2024 prescribed Mycophnolic Acid 360mg 2xday. Within a couple of months experienced migraines, daily, lasted 5 months and then just stopped. Have Raynauds for many years w/o serious issues, now it's a problem. need hand warmers/gloves 24/7. dizzy, nausea, even my eyes are extremely sun sensitive, but the hair has been thinning for about 6 months. That's the one that's upsetting. I wish I knew that if it might stop or slow down. I know the dark urine, jaundice, swollen legs/stomach, itching are symptoms from AIH. legs/stomach, which the meds have helped. I'm not sure issues I'm dealing with are side-effects from meds. Unfortunately you wait so long between appts and I leave knowing what I knew when I came into visit -- not much. I guess even doctors don't know for sure about side effects. The pharmacist is the best go-to for info but they admit they can't say for sure. I just want to know if hair will eventually stop falling out, and they know it's a side effect but can't really say it will stop. Severe leg cramping is something new and was so bad Medics had to meet me off a flight because my legs were so bad I couldn't walk and is still a problem so bad from groin to feet. Met with neurologist, bunch of tests, but no answers except maybe it's the meds! !! Hopefully the hair will at least stop thinning the way the migraines eventually stopped, Tell you the truth I never gave my liver a thought; didn't know where it was or what it does or how it effects everything. Now my life is consumed. Becky, Thanks for listening. It's just me and my dog and I'm not fun to be around lately. I still can't wrap my head around this. Doctors don't even know how you get this; maybe genetic or virus.
Yes, it has helped me a lot. I won't claim I'm back to my original thick hair, but I'm glad for all the hair that has come back AND that the hairs that fall out have lessened a good deal. I've been on the maximum dose for about 2 years.
@maize Welcome to Mayo Clinic Connect! I’m currently on mycophenolic acid for about 2 years but haven’t noticed and hair loss. I was on mychophenelate mofitil before that and I had serious diarrhea for about 4 months before the doctor could change drugs. I have Clippers, a rather new AD that just showed up long enough for me to catch it. It causes lesions on the brain. What AD do you have?
autoimmune hepatitis. It's tough finding out if what you're going through is a symptom of the diagnosis or a side effect from medications. I guess maybe a little bit of both.
read about biotin. using biotin shampoo without much result. have appt w/dermatologist next week. My problem having hepatitis there's not many medications or even supplements that I can take, but will definitely ask. thank you.
Yes, it has helped me a lot. I won't claim I'm back to my original thick hair, but I'm glad for all the hair that has come back AND that the hairs that fall out have lessened a good deal. I've been on the maximum dose for about 2 years.
I had PRP, the procedure where blood is drawn, put in a centrifuge, and the plasma is injected back,in my case, right into the scalp. I've been using minoxidil foam daily since hen, and my hair is back to normal. Unfortunately, once hair follicles die, there's nothing to bring them back to life. That's why it's so important to treat hair loss early on. Also, minoxidil benefits last only as long as you take it. It reverts back if you stop, but it's very quick, just rubbing the foam into your hair; so there's really no reason to stop.
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@maize Welcome to Mayo Clinic Connect! I’m currently on mycophenolic acid for about 2 years but haven’t noticed and hair loss. I was on mychophenelate mofitil before that and I had serious diarrhea for about 4 months before the doctor could change drugs. I have Clippers, a rather new AD that just showed up long enough for me to catch it. It causes lesions on the brain. What AD do you have?
Was diagnosed Nov 2023. I was sent to Boston Mass General as my GI dr. hadn't seen biopsy report like mine; too many possible causes; shrinking bile duct, bridging fibrosis, lupus, etc. A panel met and concluded autoimmune hepatitis. Only thing certain is that my immune system is attacking my liver. Was given mychophenelate mofitil and in 2 mos. had terrible GI issues and felt like I had an elephant sitting on my chest. Feb 2024 prescribed Mycophnolic Acid 360mg 2xday. Within a couple of months experienced migraines, daily, lasted 5 months and then just stopped. Have Raynauds for many years w/o serious issues, now it's a problem. need hand warmers/gloves 24/7. dizzy, nausea, even my eyes are extremely sun sensitive, but the hair has been thinning for about 6 months. That's the one that's upsetting. I wish I knew that if it might stop or slow down. I know the dark urine, jaundice, swollen legs/stomach, itching are symptoms from AIH. legs/stomach, which the meds have helped. I'm not sure issues I'm dealing with are side-effects from meds. Unfortunately you wait so long between appts and I leave knowing what I knew when I came into visit -- not much. I guess even doctors don't know for sure about side effects. The pharmacist is the best go-to for info but they admit they can't say for sure. I just want to know if hair will eventually stop falling out, and they know it's a side effect but can't really say it will stop. Severe leg cramping is something new and was so bad Medics had to meet me off a flight because my legs were so bad I couldn't walk and is still a problem so bad from groin to feet. Met with neurologist, bunch of tests, but no answers except maybe it's the meds! !! Hopefully the hair will at least stop thinning the way the migraines eventually stopped, Tell you the truth I never gave my liver a thought; didn't know where it was or what it does or how it effects everything. Now my life is consumed. Becky, Thanks for listening. It's just me and my dog and I'm not fun to be around lately. I still can't wrap my head around this. Doctors don't even know how you get this; maybe genetic or virus.
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3 Reactions@maize have you ever taken the biotin supplement? I do think it helps with my hair loss. At least some.
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3 ReactionsYes, it has helped me a lot. I won't claim I'm back to my original thick hair, but I'm glad for all the hair that has come back AND that the hairs that fall out have lessened a good deal. I've been on the maximum dose for about 2 years.
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3 Reactionsautoimmune hepatitis. It's tough finding out if what you're going through is a symptom of the diagnosis or a side effect from medications. I guess maybe a little bit of both.
read about biotin. using biotin shampoo without much result. have appt w/dermatologist next week. My problem having hepatitis there's not many medications or even supplements that I can take, but will definitely ask. thank you.
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1 ReactionI am curious what the maximum dose is. I am on 10000mcg as per my dermatologist for another condition. Best wishes.
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1 ReactionWow! I've been told by several doctors to only do 5000 mcg. But I assume
your issues have a special need. I wish you well!
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1 ReactionInteresting...Maybe it has to do with how it effects some lab tests. Just guessing.
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1 ReactionI had PRP, the procedure where blood is drawn, put in a centrifuge, and the plasma is injected back,in my case, right into the scalp. I've been using minoxidil foam daily since hen, and my hair is back to normal. Unfortunately, once hair follicles die, there's nothing to bring them back to life. That's why it's so important to treat hair loss early on. Also, minoxidil benefits last only as long as you take it. It reverts back if you stop, but it's very quick, just rubbing the foam into your hair; so there's really no reason to stop.