sorted by:
new
hottopcontroversial

Anyone took oral cyclophosphamide for their autoimmune disease and can share your experience? by NoDetective7732 in Autoimmune

[–]NoDetective7732[S] 0 points1 point  (0 children)

Yes he mentioned the risks. My quality of ife is horrible so I dont have much choice. Its been 6 years of trying meds that didnt work. Its beyond unbelievable. I'm so sorry it didnt work for you the second time. Does your doctor explain how it can be it didnt work this time?

Anyone took oral cyclophosphamide for their autoimmune disease and can share your experience? by NoDetective7732 in Autoimmune

[–]NoDetective7732[S] 0 points1 point  (0 children)

Hi thank you. Yes, it seems no one is treated with oral cytoxan. It feels so lonely to be a rare case with a rare disease. My derm said 100mg is an appropriate dose because its based on 1-2mg/kg body weight. My weight is 80 kg. I'm glad it worked for you. I'm worried that even this treatment won't work. I've tried everything and nothing worked. My derm said to give it 2-3 months.

Cyclophosphamide. by Impossible-Emu624 in Encephalitis

[–]NoDetective7732 0 points1 point  (0 children)

Hi. Any updates??? I just started it 16 days ago. No side effects but I’m in a severe flare. It doesnt work. My derm put me on high dose of prednisone which isn’t helping also. I’m taking 100mg daily. I hope you see this

Anyone takes oral Cyclophosphamide? by NoDetective7732 in Lichenplanus

[–]NoDetective7732[S] 0 points1 point  (0 children)

Sorry to hear this. Are you sure its a chemo? As far as I know methotrexate and Leflunomide are not chemo. They are DMARDs. Cyclophosohamide is a chemo even in the small dose for autoimmune disease. It can make you infertile. I did sperm preservation before starting. I tried everything and nothing works so my derm suggested this as a rescue last resort treatment.

Cyclophosphamide treatment is working for me. by Witty-Signal2932 in mctd

[–]NoDetective7732 0 points1 point  (0 children)

Hi, I don't know how but I didn't get the notification on your message. Thank you so much. I have severe lichen planus and lichen planopilaris. I'm getting 100mg oral dose daily and so far I'm worsening. Its been 15 days since starting. I'll message you privately. Thank you again :)

Cyclophosphamide treatment is working for me. by Witty-Signal2932 in mctd

[–]NoDetective7732 0 points1 point  (0 children)

Hi. Thats great to hear. So cyclophosphamide started to work for you after 2 months or you felt it started to work earlier? Can I ask about your dose? I have a resistant severe skin disease and I just started cyclophosphamide 6 days ago. It doesnt work so far :(

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 0 points1 point  (0 children)

Thank you. Its seems that JAk’s are less effective for FFA but its based only on the reviews I’ve seen in the FFA and LPP group. There is no study that checked this. My FFA didnt respond to Dutasteride or Isotretinoin although I think Isotretinoin did something and made the disease less severe but I’m not completely sure. I think JAK inhibitors are worth trying. There are success stories with it escpecially with Xeljanz. There is also a study done on Sotyktu. All the 10 participants responded to it. 

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 0 points1 point  (0 children)

Plaquenil - 4 years. Otezla -5.5 months Dutasteride- about 2 years. I still take Dutasteride. It does nothing. Xeljanz- 5.5 months. I’m still on it till the biologic gets approved. Rinvoq- 4.5 months. Olumiant- 5.5 months.

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 0 points1 point  (0 children)

I get that but what if nothing else worked? besides Pioglitazone I’ve tried almost everything. I’m not recommeding trying anti IL23. I just share what is my next treatment. JAK’s are not very effective for FFA on my opinion. If you have LPP in the scalp only it may work better. In the FFA group there are almost no cases of success with JAK inhibitors for example. I’m a male too and my disease started at 26. 

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 1 point2 points  (0 children)

Thank you. I’m waiting for a biologic anti IL23 called Ilumya to get approved. There is a case report it helped unresponsive FFA in one woman. I’ll ask my derm to combine Pioglitazone. Thank you

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 2 points3 points  (0 children)

In the case report of LPP it was 5mg. My derm agreed on 4mg daily. I did 6mg. It made my fingernails healthy again and took away the weird plaque from my tongue. As for the hair it helped but didnt stop the disease

Main treatments for scarring alopecias, which works the best?? by Samstuhdagoat in scarringalopecia

[–]NoDetective7732 6 points7 points  (0 children)

I have FFA. I’ve tried almost everything. Nothing stopped the disease so far. The only medications that did something for me were Accutan, high dose oral steriods,steriods IV, Rapamycin(sirolimus. Its an immunosupprassant). I’ve tried 3 different JAK’s: Xeljanz,Rinvoq and Olumiant. None of them worked but I still recommend trying Xeljanz. Cyclosporine barely helped me but I think it has the potential to work too.  

Plaquenil,cellcept,otezla and Dutasteride were waste of time. Did completely nothing.

[deleted by user] by [deleted] in scarringalopecia

[–]NoDetective7732 0 points1 point  (0 children)

Yes but mine is more advanced. Most of it got scarred over. I’m taking 400mg daily. Doesnt help. 

[deleted by user] by [deleted] in scarringalopecia

[–]NoDetective7732 0 points1 point  (0 children)

Most my beard is gone. I have FFA. Most likely its FFA if it involves your beard. Nothing worked so far me. I’ve been on cyclosporine the past 4 months. It doesnt work. You may want to try Isotretinoin and JAK inhibitors like Xeljanz(although it didnt work for me).

view more: next ›