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Stopped Xeljanz and hairs are falling again. Need help
Hey guys! I cured my AU with generic Xeljanz in a short span and I was fine for few months. Later I started lowering my dosage and now my hairs are falling and I have huge patches. This is really heartbreaking to me. I'm losing confidence to face people again. Please help me. I'm currently on 20mg a day. Do you guys have experienced the same?
Replies to This Discussion
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Permalink Reply by SabineTawni on
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So much good information, Kevin! Thank you so much; you answered all my questions. And I agree, I personally would rather have a shorter quantity of life than a longer quantity of life if that shorter quantity provided a better QUALITY OF LIFE. But that's just me, and I respect the people that don't feel that way. However, I also have been reading some really concerning things about Xeljanz (loads of lawsuits) and am wondering if it will be pulled from the market at some point.
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If you have any questions you can ask me since 2014 that I have been following clinical trials for side effects, and 2018 that I am taking xeljanz I have been to consult my doctor more than once.
I can tell you how to adapt your daily life to minimize the side effects of the drug. before xeljanz I tried all the treatments methotrexate cortisone, UV, contact therapy, minoxidil, dermoval,
I even tried Professor Passeron's interleukin 2 in France in 2017 in a zero-result trial.
all the treatments or more or less worked but relapsed in 2 months..
so currently the only treatment for severe and long alopecia areata for hair and hair maintenance and jak inhibitors for 90% it maintains regrowth as long as we are on the drug but it can have inflammation and small relapse and it must be adopting a combination of another cortisone type medication on the short term to reduce this and control the disease an autoimmune disease that is never cured for most of us..
have a healthy lifestyle and diet not be sedentary take dietary supplement cures for the liver fast. add omega 3. honey strengthening the immune system. those are not miracles but it can help a lot. do not smoke avoid alcohol. be followed by a doctor to do a blood test 1 to 2 times a year depending on your condition.
all the drugs have little or very serious side effects tramadol kills 250 k people and it is one of the codeine drugs that kills the most people in the United States and it is prescribed like candy except that the tramadol or cortisone only costs 2 euros a box. everything is a business.
alcohol and daily cigarettes will cause far more death and side effects than xeljanz.
by taking xeljanz you will not die or develop a disease overnight, that's why you have to be followed and listen to your body.
myself daily I can see myself the state of my health my blood pressure my heart rate with a blood pressure monitor. the state of my stools the color of my urine, the state of my moles, the color of my skin if I don't have jaundice.
so the advice is not to take the test into account because it is on people in poor health with cardiovascular disease and a history of cancer subject over 50 years old without knowing their daily life rhythm smoker alcohol obesity if he was on medication other than xeljanz because it's for rheumatoid arthritis.
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you can find a long term study of baricitinib of up to 9 years of drug use in a varied population and for the most part the drug is well tolerated.
so a priori I think that the jak inhibitors can be taken in the long term especially for the new classes to come which will target less jaks to avoid its side effects even if xeljanz is suspended pfizer and other pharmaceutical companies developing others with better security for targeting a minimum of pathway, for alopecia because the xeljanz targets more of which are not useful for alopecia that is why you need a jaks inhibitor especially for alopecia you need wait until 2023 to 2025 for a marketing.
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Hello!
I started taking Xeljanz one year ago, April 2021 I also have ulcerative colitis and developed AU first time in my 60's. I am surprised at the high dose everyone else has been prescribed. They prescribed mine 5mg twice a day. My cholesterol is high as a result so I very very slowly cut evening dose in half, than in half again. I now take 5mg in morning and a quarter of a 5mg pill in the evening and I am going to leave the dose at that. I have not seen any fall out.
After a year my eyelashes have grown back, I have spotty eyebrows, my hair is about three inches long on my scalp, mixture of white vellus hair and my permanent hair color brown. Extremely slow process perhaps because of the low dose they have me on? not sure. I don't plan on reducing the dose anymore, I feel like I am at a safe dose for maintenance.
I agree with Kevin below, this will most likely have to be a maintenance lifelong drug. I hope one day to have normal looking eyebrows and a solid color head of hair. Greatful for what is there for sure, such a strange affliction one only those of us who have been there can comprehend. Thank you everyone for your input appreciated.
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hi san.. sorry to hear what you are going through. go to medicalmedium.com as his protocols did help me and he explains the why into what is happening with us. best of luck! hoping the new year will bring positive changes to your life.
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I also warn people that they want to take these drugs thinking of taking it for 5 months it will be useless the relapse will be systematic and the psychological damage will be catastrophic, you have to understand that it is not a cure for 95%... maybe for a person who has had alopecia areata once in his life for a short duration of the disease he could be in total remission but it is extremely rare.
and don't count on a cure why the pharmaceutical companies will make a cure when he sells drugs that bring them billions a year
why Make a vaccine for covid with an effectiveness of 4 months to make reminders 2 to 4 times a year to sell their shit which brings them billions. xeljanz brings in $4 billion a year to pfizer for a small population of autoimmune diseases.
so imagine a global epidemic vaccinated 4 times a year there will never be a vaccine with long-term effectiveness on an epidemic, especially an infection that has been cured by 99.9% I assure you that this epidemic would have reached a peak of death and the 70% of anyone would die of any population young old children a cure the virus would have already disappeared so no reason to find the miracle vaccine at one dose
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I am currently in trial with ctp-543. I lost all my hair (universalis) in 2017, fast forward now & I started taking ctp-543 in February & its March 25 & all my facial hair is back, my head hair has pretty much come back , eye brows are in. I am blessed to say I haven't experienced any side effects.
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Great for you, you have the best drugs in this class, ctp 543 has the best results even on xeljanz and baracitinib non-responders.
You're only at the start of the treatment given how quickly it's going for you, you should be 100 % in the year 2022.
do you have any information on the end of this last phase 3 and the release of ctp 543.
and if you can continue to take the medicine until the release of the ctp?
because if you stop the drug unfortunately a relapse is likely in the majority of cases.
in Paris, France, he has also been taking part in this trial since April 2021. But since I am taking xeljanz with partial hair regrowth, I would like to switch to ctp 543 when it comes out.
I read on their site that they anticipate a marketing application in 2023
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there are debates here and participants in his trials and I have seen a lot of positive on the ctp 543 but the 'e give more news when they are in remission but come back when the disease will return or ask for information or advise on the Side effects.
don't worry about side effects there are very few side effects on already healthy people if you have side effects it will be manageable
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I've been taking xeljanz for 4 years and several much longer than me I've had a few colds otitis shingles and everything has been repaired the only effect that persists is the increase in cholesterol which is still binding in the long run for illnesses cardiovascular.
I will rebalance my diet and adding Omega 3 red yeast rice. and make a cure for the liver of Black Radi.
in principle lower cholesterol.
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So happy to hear this! However, at age 73, I am certain that I would be excluded as an eligible participant for this trial and any others that pop up, due EXCLUSIVELY to my age. I wonder if it has occurred to anyone conducting these trials, that at my age, I am perfectly capable of deciding what risks I wish to take and what risks that I do not wish to take with my health/life. On another note, if CTP 543 is approved, will we have to deal with insurance companies who insist that it's NOT MEDICALLY NECESSARY. Anyone with AU learns very quickly that hair is NOT cosmetic. Hair serves a function; it is a protectorate. Having no nose hairs, for example, means a constant runny nose, and no protection from invasion of germs, bacteria, etc. No eyebrows, no eyelashes means a constant assault on the eyes from outside elements (i.e., dirt, debris, sweat, etc.) increasing the risk of injury and infections. But I guess insurance companies know best, don't they. LOL!!
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the ctp 543 will be intended for alopecia so you won't pay anything. finally in France it's like that.
why don't you order beacon generic from bangladesh for 4 years i order my expensive boxes from them.
15 dollars per box of 11mg
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