Xeljanz and Looking Ahead to the Future... - Alopecia World2024-03-28T08:53:10Zhttps://alopeciaworld.com/forum/topics/xeljanz-and-looking-ahead-to-the-future?feed=yes&xn_auth=noWell over the last 6 months s…tag:alopeciaworld.com,2019-01-08:2022678:Comment:14387102019-01-08T21:35:14.155ZMoonbeamhttps://alopeciaworld.com/profile/Moonbeam
<p>Well over the last 6 months since Xeljanz was rejected by my insurance, I decided to try methotrexate, since that was the quickest route to get it approved (MTX, or try two biologics). </p>
<p>I had an allergic reaction to MTX after 4 weeks of taking it - itchy rashes all over my chest, stomach and back. Fortunately, this meant my doctor's next appeal for Xeljanz was approved. </p>
<p>I was so giddy to have it in my hands, and so happy to finally see if it would work for me. However, I had a…</p>
<p>Well over the last 6 months since Xeljanz was rejected by my insurance, I decided to try methotrexate, since that was the quickest route to get it approved (MTX, or try two biologics). </p>
<p>I had an allergic reaction to MTX after 4 weeks of taking it - itchy rashes all over my chest, stomach and back. Fortunately, this meant my doctor's next appeal for Xeljanz was approved. </p>
<p>I was so giddy to have it in my hands, and so happy to finally see if it would work for me. However, I had a (possibly allergic?, but certainly adverse) reaction to the very first pill. Within an hour of taking it my arms went completely numb and heavy, and my lips also became numb. This is the same reaction I had to another jak inhibitor, CTP-543, in the current drug trial and which caused me to drop out. Apparently, this is a pretty rare reaction to jak inhibitors, and the study investigators as well as my current doctor have no idea why or what could cause it. Maybe underlying MS was triggered like with Humira? The numbness peaks and lasts for several hours, fades, and disappears completely after 3 days. Would this side effect disappear after continuing medication for a longer period of time? We're all (doctors and myself) too freaked out to try! Haha! This means any and all jak inhibitors are likely off the shelf, for me. </p>
<p>So crushed, right now. </p>
<p>Next steps? Guess I'll look into seeing if insurance will cover secukinumab/Cosentyx or PDE4/apremilast. Neither have the success that Xeljanz offers, but are more selective in targeting IL17a, and PDE4 , respectively. Though I think IL23/Stelara would be more successful, it's one of the most expensive drugs in the U.S for treating psoriatic arthritis (PsA - what I'm trying to treat alongside AU) and likely wouldn't be covered by my insurance.</p>
<p>Hopefully I can try one of these, without strange and mysterious neurological side effects. :/</p>
<p></p> I recently stopped xeljanz an…tag:alopeciaworld.com,2018-07-13:2022678:Comment:14229962018-07-13T14:35:22.700ZNYC_Gal_1981https://alopeciaworld.com/profile/NYCGal1981
<p>I recently stopped xeljanz and most of my hair fell off after 2 months of stopping. I've gotten back on the medication (been a month in) and I think shedding has slowed down a little bit (not stop fully though) - just wanted to get feedback on whether others have had this issue and if so, if regrowth happened in your case. Let me know, thanks!</p>
<p></p>
<p>I recently stopped xeljanz and most of my hair fell off after 2 months of stopping. I've gotten back on the medication (been a month in) and I think shedding has slowed down a little bit (not stop fully though) - just wanted to get feedback on whether others have had this issue and if so, if regrowth happened in your case. Let me know, thanks!</p>
<p></p> Hey
has anyone here got andro…tag:alopeciaworld.com,2018-05-04:2022678:Comment:14180552018-05-04T07:30:56.238ZLittleSadEyeshttps://alopeciaworld.com/profile/LittleSadEyes
<p>Hey</p>
<p>has anyone here got androgenetic alopecia also, or just androgenetic alopecia and tries xeljanz?</p>
<p>Hey</p>
<p>has anyone here got androgenetic alopecia also, or just androgenetic alopecia and tries xeljanz?</p> Sounds like the culprit could…tag:alopeciaworld.com,2018-05-01:2022678:Comment:14176832018-05-01T18:07:39.252ZFootball fanhttps://alopeciaworld.com/profile/Footballfan
<p>Sounds like the culprit could have been the tooth infection.Thats how I got when I needed a root canal..Six months before I started xeljanz I got deviculitis if I started xeljanz six months earlier I probably would have blamed the medication because it can be side effect.Wonder what fast track means one year or five.</p>
<p>Sounds like the culprit could have been the tooth infection.Thats how I got when I needed a root canal..Six months before I started xeljanz I got deviculitis if I started xeljanz six months earlier I probably would have blamed the medication because it can be side effect.Wonder what fast track means one year or five.</p> CTP-543 has been fast tracked…tag:alopeciaworld.com,2018-05-01:2022678:Comment:14175112018-05-01T16:01:31.872ZMoonbeamhttps://alopeciaworld.com/profile/Moonbeam
<p>CTP-543 has been fast tracked by the FDA - might end up being the first treatment approved for alopecia: <a href="https://www.naaf.org/news-room/fda-grants-fast-track-designation-to-concert-pharmaceuticals-ctp-543-for-the-treatment-of" target="_blank">https://www.naaf.org/news-room/fda-grants-fast-track-designation-to-concert-pharmaceuticals-ctp-543-for-the-treatment-of</a></p>
<p>I was (very briefly) in the trial for this drug. I lasted less than a week. I should mention I'm very sensitive…</p>
<p>CTP-543 has been fast tracked by the FDA - might end up being the first treatment approved for alopecia: <a href="https://www.naaf.org/news-room/fda-grants-fast-track-designation-to-concert-pharmaceuticals-ctp-543-for-the-treatment-of" target="_blank">https://www.naaf.org/news-room/fda-grants-fast-track-designation-to-concert-pharmaceuticals-ctp-543-for-the-treatment-of</a></p>
<p>I was (very briefly) in the trial for this drug. I lasted less than a week. I should mention I'm very sensitive to drugs - I usually have to take a half dose of medication, which isn't an option in this trial, so it may have affected me more strongly than it would others. Those first two days on it I felt awful. Very awful. I shouldn't have been driving to work and I definitely should not have been at work. Fatigued as hell/massive headache/ dizzy dizzy dizzy. The second/third day my lips became numb and I stopped taking it as this can mean an allergic reaction. My brain felt sluggish. My lips were still numb a day after I stopped taking the medication. I decided not to take it again. The next week I had a tooth infection and needed a root canal. I guess it's possible that the numbness was caused by the infected tooth pressing on nerves but I'll never know for *certain* unless I tried the medication again. But I got spooked and probably won't! XD</p>
<p>Now, I'll admit I've NEVER taken any serious medications before - maybe this is what starting medications feels like and my body would have gotten used to it? Is that everyone else's experience (that you feel like you got hit by a car) when starting Xeljanz??</p> Sorry I didn't see your respo…tag:alopeciaworld.com,2018-05-01:2022678:Comment:14177962018-05-01T15:44:46.870ZMoonbeamhttps://alopeciaworld.com/profile/Moonbeam
<p>Sorry I didn't see your response until just now. We tried for Xeljanz and it was rejected by the insurance company (they want me to try methotrexate or, Humira and Enbrel first before approving Xeljanz). My doctor is currently appealing their decision - it's been about 5 months of paperwork and appealing and they may still reject it.</p>
<p>Humira may not be a bad decision for me though, in regards to psoriatic arthritis it could help with that, but it's a gamble on the hair. ;D (See…</p>
<p>Sorry I didn't see your response until just now. We tried for Xeljanz and it was rejected by the insurance company (they want me to try methotrexate or, Humira and Enbrel first before approving Xeljanz). My doctor is currently appealing their decision - it's been about 5 months of paperwork and appealing and they may still reject it.</p>
<p>Humira may not be a bad decision for me though, in regards to psoriatic arthritis it could help with that, but it's a gamble on the hair. ;D (See <a href="https://jamanetwork.com/journals/jamadermatology/fullarticle/1913664" target="_blank">https://jamanetwork.com/journals/jamadermatology/fullarticle/1913664</a>). Don't want to take methotrexate. I'm pretty firm on that. Still curious as well about TH17/IL 23 inhibitor: "ustekinumab". Not as heavily studied as Xeljanz but has helped some with alopecia and is more specifically targeting inflammatory marker IL 23:</p>
<p><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5614637/" target="_blank">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5614637/</a></p>
<p><a href="https://www.jacionline.org/article/S0091-6749" target="_blank">https://www.jacionline.org/article/S0091-6749</a>(15)01582-1/fulltext?code=ymai-site</p>
<p>IL 23 seems to be key in alopecia: <a href="https://www.jacionline.org/article/S0091-6749" target="_blank">https://www.jacionline.org/article/S0091-6749</a>(15)00931-8/fulltext </p> Bonjour
Kévin
merci pour tes…tag:alopeciaworld.com,2018-05-01:2022678:Comment:14177902018-05-01T11:52:52.171Zmacdevhttps://alopeciaworld.com/profile/devezemarc
<p>Bonjour</p>
<p>Kévin</p>
<p>merci pour tes reponses</p>
<p>es -tu sorti de l 'essal clinique Il2 ? j' avais cru comprendre qu'il y avait des contrôles après 1 an... Le Pr Passeron est il au courant de ton traitement avec Xeljanz? Ce traitement peut modifier les résultats (et donc l'interprétation) qu'aurait eu Il2 seul au long cours.</p>
<p>Tu payes Xeljanz en espèces en Turquie, ils acceptent les euros?</p>
<p>Je suis ravi de tes progrés! Qui fait tes analyses de sang de suivi ? Un…</p>
<p>Bonjour</p>
<p>Kévin</p>
<p>merci pour tes reponses</p>
<p>es -tu sorti de l 'essal clinique Il2 ? j' avais cru comprendre qu'il y avait des contrôles après 1 an... Le Pr Passeron est il au courant de ton traitement avec Xeljanz? Ce traitement peut modifier les résultats (et donc l'interprétation) qu'aurait eu Il2 seul au long cours.</p>
<p>Tu payes Xeljanz en espèces en Turquie, ils acceptent les euros?</p>
<p>Je suis ravi de tes progrés! Qui fait tes analyses de sang de suivi ? Un laboratoire de quartier? ou l'hopital?</p>
<p>Merci encore pour tes réponses</p>
<p></p> Mon analyse de sang va bien n…tag:alopeciaworld.com,2018-04-28:2022678:Comment:14175752018-04-28T16:23:02.323Zkevinhttps://alopeciaworld.com/profile/kevin782
<p>Mon analyse de sang va bien niveau du il2 , j'ai eu une amélioration de mes ongles et cheveux mais une légère repousses. Donc 1ans après il2 j'ai décidé de passer à xeljanz je paie 425euro la boîte j'ai de très bonne repousses au bout de deux mois . J'ai pas d'ordonnance mais un mot de mon dermatologue qui stipule que je suis en traitement xeljanz et en aucun je dois interronpre cela est pour la douane française si je me fais contrôler j'ai acheté 12 boite il ya deux jour . Pharmacie rebul…</p>
<p>Mon analyse de sang va bien niveau du il2 , j'ai eu une amélioration de mes ongles et cheveux mais une légère repousses. Donc 1ans après il2 j'ai décidé de passer à xeljanz je paie 425euro la boîte j'ai de très bonne repousses au bout de deux mois . J'ai pas d'ordonnance mais un mot de mon dermatologue qui stipule que je suis en traitement xeljanz et en aucun je dois interronpre cela est pour la douane française si je me fais contrôler j'ai acheté 12 boite il ya deux jour . Pharmacie rebul Istanbul demander memet il parle français. </p> bonsoir à tous
Kévin
Comment…tag:alopeciaworld.com,2018-04-19:2022678:Comment:14170342018-04-19T17:58:06.472Zmacdevhttps://alopeciaworld.com/profile/devezemarc
<p>bonsoir à tous </p>
<p>Kévin</p>
<p>Comment va -t-on analyser tes résultats (je parle dr Pr Passeron par exemple) avec IL2 alors que tu as commencé un nouveau traitement avec Xeljanz?</p>
<p>Peux tu me rappeler comment tu t'es débrouillé pour obtenir Xeljanz en Turquie, quelle pharmacie , à quel prix et ton "ordonnance de France "</p>
<p>merci</p>
<p>bonsoir à tous </p>
<p>Kévin</p>
<p>Comment va -t-on analyser tes résultats (je parle dr Pr Passeron par exemple) avec IL2 alors que tu as commencé un nouveau traitement avec Xeljanz?</p>
<p>Peux tu me rappeler comment tu t'es débrouillé pour obtenir Xeljanz en Turquie, quelle pharmacie , à quel prix et ton "ordonnance de France "</p>
<p>merci</p> Hello Susan two months to 10…tag:alopeciaworld.com,2018-04-19:2022678:Comment:14171632018-04-19T15:57:46.346Zkevinhttps://alopeciaworld.com/profile/kevin782
<p>Hello Susan two months to 10 mg what do you think of my progress compared to yours and others? am I in good progress</p>
<p>Hello Susan two months to 10 mg what do you think of my progress compared to yours and others? am I in good progress</p>