Frida Rupert
  • Female
  • New South Wales
  • Australia
Share
  • Blog Posts
  • Discussions (582)
  • Events
  • Groups
  • Photos
  • Photo Albums
  • Videos

Frida Rupert's Friends

  • Jayc2112
  • Hollyann70
  • Tca631
  • Ricky_1008
  • nb3689
  • Meedo
  • Arsenalauba
  • hellopeesha
  • Devices561
  • Ahmed
  • Sad_Rapunzel
  • Radhwan
  • LJBMD
  • Alo Kiwi
  • Ron's mom

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

Gifts Received

Gift

Frida Rupert has not received any gifts yet

Give a Gift

 

Frida Rupert's Page

Latest Activity

Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I may have misunderstood but reading his comment I think he meant that he had AU for six years prior to starting treatment. I think we have flares, where the disease is so strong a shed happens, this require either patience and nerves of steel to…"
Feb 15
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi NewJack, hope you are well. Thanks for this bit of info. What I’ve heard is pretty similar - they are testing on RA rather than Alopecia, RA always have a prognosis that is worse than ours, as the disease is often attacking other internals.…"
Feb 12
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Kevin has been one of the longest standing contributors on this forum, also o e of the only people posting to have used baricitinib - he was also the one who actively undertook testing on beacon generic tofacitinib, and has been involved  in…"
Feb 8
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, mostly I’m on 15 mg these days, I drop to 10 mg when life is pretty stable and health good, but up it when stressful occurrence happen, mainly cause those tend to trigger flares in my hashimotos (I feel hot all the time, lose weight…"
Feb 1
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Well I can’t say 100%, that said it could be BUT I think there is still a market, even if FDA does pull the pin. It might become something that isn’t necessarily prescribed anymore - just like some peptides these days, basically the user…"
Jan 31
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"It’s an RA study, while concerning, RA have risk factors we don’t, in addition Jaks inhibitors are now finding a place, albeit small, in treating severe covid, so    that could help motivate continued production.…"
Jan 31
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Maree, I think the main thing is to just plough through. I haven’t had covid but I imagine it is probably similar to having something like glandular fever or any fever really, it can cause a flare, but in other cases most recover from…"
Jan 4
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Nat, I’m torn about it. I want to see what vaccine gets approved here in Australia, and whether it is a “live” vaccine or not. Typically I am pro-vaccine, and will probably get it when available, but recent news stories about…"
Dec 10, 2020
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Yes, most follow still and contribute once in awhile. Headaches I think are a side effect but a lot of the side effects ease after the first few weeks. I had a gurgling stomach, acne and weight gain initially and after a time these went away. If…"
Dec 10, 2020
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, 2020
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, 2020
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, 2020
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, 2020
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, 2020
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, 2020
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, 2020

Profile Information

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

Comment Wall (1 comment)

You need to be a member of Alopecia World to add comments!

Join Alopecia World

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!

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2021   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service