Frida Rupert
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  • Australia
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Frida Rupert's Discussions

www.deox.com. Anyone tried and were you scammed?

Started this discussion. Last reply by Frida Rupert Aug 1, 2018. 4 Replies

Hi, I am starting Xeljanz soon (bloods being checked etc). While looking online like we all do I came across this website offering it in a topical. I like many Alopecians are vulnerable to a scam,…Continue

Tofacitinib from overseas part 2

Started Jun 23, 2017 0 Replies

In addition I forgot to mention currrntly doing ddcp treatment, and have had oral steroids in 4 week pulses to no avail. Also take biotin, zinc, vit d, silica and collagen vitamins too.

Getting tofacitinib from overseas

Started this discussion. Last reply by Frida Rupert Jun 23, 2017. 2 Replies

I just joined the group after being in a bit of denial. I have had 3 episodes of AA - my first at 22, second at 26 and now at 34. I was very lucky the first few times and recovered in 6 months back…Continue

Tags: Tofacitinib

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Latest Activity

Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Yeah I feel you and with AA not AU I think just sticking on the meds without steroids is the best option. Totally get the emotional wreck aspect, believe me - I was the same, Sometimes I had to take Valium just to get through the day during my…"
Oct 8
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Tori, I would keep going, it often can take more then 6 months and if your alopecia is in a particularly strong phase it probably will take longer. I would stay on current dose, consider an oral steroid pulse (search on this thread- about 3…"
Oct 7
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Patchy Latchy, Basically he just said to stay away from grapefruit, and watch the alcohol, as in a few drinks a week ok but daily alcohol may put strain on the kidneys and liver. Other then that cholesterol can go up, so managing that with diet…"
Oct 3
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi patchylatchy, I think many people need 15 -20 mgs to start growth, after growth is established then slowly dropping down to 10 per day is the general plan I see most people stick too. Bear in mind, it’s very individual and even on meds…"
Oct 3
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi eleven11, I had surgery and stopped taking it for about 10 days from memory. What I did was lower the dose until about 3 days before surgery then stopped and then after 1 week, when incisions healed I amped up and took 20 mgs. I even considered…"
Sep 22
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, sorry I didn’t get back to you sooner. I think it’s exciting that you are moving to baricitinib, I suspect non responders or partial responders may do better on baricitinib, its very dependent on the individual as to what they…"
Sep 13
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Nat, I’d see if you can get a steroid shot in the spot and consider going back up to the pre July dose and waiting until the spot fills and then reduce very very slowly after. One spot I think will be fine, and it does happen even on higher…"
Sep 13
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Arsenalauba, it can take along time to get going. I think 6 months at high dose is not unusual at all, indeed I think this is why earlier trials weren’t as successful- the patients were stopped if nothing was seen at 3 months. I would even…"
Aug 22
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Maree, I don’t think it’s uncommon to have a patch appear, unfortunately the only real way to counter this is to take strong steroids as a pulse therapy, though I think it’s important to give it time to see if the spot…"
Jun 30
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"that’s wonderful NYguy! I know I go on and on about the time thing but honestly it can take more than 8/9 months to respond in the beginning and it’s so hard not to give up, especially if you are stuck paying the insane price for the…"
Jun 29
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Sara, yes their are a few who have used Tofacitinib on kids, most have similar success to adults and generally tolerate the medication well, the only thing I have noticed is that dosing is a bit unpredictable with kids and the results are a tad…"
Jun 6
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Jcortez, mine took a few months to get pigment. I remember it felt like a really long time to go from white fuzz to normal thick coloured hair, but it did happen. I suspect the longer the hair has been gone the longer it takes our hair follicles…"
May 20
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Carlie, I have had success with India mart but also failures. For the most part it’s come through fine, but I tend to think Beacon is the best option as their meds are tested and they have a history of success. I think you can look at…"
May 13
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks Joja! I am hopeful they will pull through this tough time, but expect they are probably inundated with orders for covid 19 related medication and are required to assist domestic supply in response to current shortages etc."
Apr 23
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Carlie, of late the best way to get in contact is to go onto the webpage and do a quick order. I got an order through about 3 or so weeks back but I suspect soon they will be told to focus on domestic supply to help counter covid 19 when it hits…"
Apr 22
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Sahel,  Have you seen any patches? There are people who do have relapses, most of these seem to pass with dose adjustment or just riding it out. I’ve had a few “sheds”, not noticeable to anyone but me, and I increased dose…"
Apr 3

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Do you have alopecia?
Alopecia areata
Are you age 18 or older?
Yes - I am 18 or older

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At 10:57am on January 1, 2020, Anisha said…

Hi Frida, Starshine told me you have been taking Tofacinix from Beacon Pharmacy in Bangladesh. Do you recommend this? My insurance company just cancelled my Xeljanz coverage and I'm looking for a more affordable alternative. Would love to hear about your experience with thi drug. Thanks!

 
 
 

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