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TSW Talks: Cyclosporine & Immunosuppressants | FAQs, My Experience, & What You Need to Know

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Hey guys it’s your girl in tsw world i wanted to make just a really quick straightforward video about immunosuppressants specifically cyclosporine in my case because i feel like there’s not a lot of like helpful or just really not a lot of information at all about immunosuppressants with tsw and cyclosporin and i am a patient of dr rapport so that means

Anything to you he’s kind of the guru of tsw um and so i’ll be talking about what he thinks about immunosuppressants and try and be i will try and be the uh modern prometheus taking the fire from the gods of dr ravaport and sharing it with you guys as best as i can just so you have more information and can figure out how to maximize your healing journey but also

Stay comfortable and stay sane so i am officially done with my 14 month as of like i think it’s tomorrow but we’ll say today so that’s crazy i really never imagined being on month 14 and still going so i’m gonna say that’s great um i started cyclosporine last month at the beginning of last month so it’s been almost two months of being on cyclist born now and you

See that like i’m still not doing awesome um i just got out of the bath so you can see i’m all nice and moisturized i’ll give you like a closer view on my skin but i’m doing okay i mean way better than 14 months ago so um i was in a really bad way at the beginning right now it’s the end of january um at the beginning of december and reached out to dr rapport and

We decided to put me on cyclosporin and that was something that i never expected in a million years that i would be doing when i started tsw i’ve always been really really really really really cautious about being on medication obviously with all the experiences that we have had with steroids so it has it was a big decision for me and it was something that took

Me 13 months to get to as well but i was in just a really bad way and just mentally like could not handle the amount of suffering that i was undergoing every single day so i said yes after talking to dr rappaport he said he really really felt like it was the right solution well not solution but the right option for me and would help my healing so i have been on

It yeah like i said for about two months and i was really expecting more i’m not gonna lie like the few people that i have seen that have been on cyclosporine like are like i’ve been on it five days or a week and i’m doing like pretty much perfect now so i was kind of expecting the same thing i think dr rappaport was expecting more for me too but i have been on

Steroids for about 25 years straight and i was on clubatisol taking or putting that on my face and my whole body about like multiple times a day for the last three plus years too so i was definitely a super abuser not knowing it um so take that with whatever information that you need i was concerned about cyclists board maybe like just totally shutting off my

Immune system and maybe like halting healing in some way but i definitely don’t feel that way now that i’m on it i haven’t had any bad side effects the big three that i was worried about was like weird body hair growing all over in strange places have not had that kidney issues which i have not had i have taken like i am getting my blood drawn every month or

Every yeah four or five weeks to check for any kind of kidney distress and i’ve been fine so far um and then i have super super low blood pressure so um i have been fine as far as the other potential complication of high blood pressure too so i’ve been doing totally fine and great on cyclosporine i’m taking milligrams a day for the first week dr rappaport had

Me on 300 milligrams a day and i will show you pictures here on of my hands so you can see this hand is like from right before i started and then after a week just how much that huge fissure in my palm closed up so it’s definitely helped and it’s really really helped with redness i was still mostly tomato red all the time before cyclosporn and that has really

Really helped with the redness so i still have red moments and i still have itch attacks and like there’s nothing that has completely gone away with being on cyclosporine but it has helped just dial the intensity of my symptoms from like 10 to like maybe a five or six and when i was on 300 milligrams it was maybe like down to a four or a five but continuing

To be on it longer and still like seeing my skin fluctuate hormonally it’s still maybe like a five or six as far as where i would like to be um so yes as far as talking about if you’re thinking about taking an immunosuppressant just the advice that dr rappaport gave me from his medical experience and the experience of his patients he said he’s put 600 people

On cyclist born 600 of his worst patients he calls them his basket cases and i’m one of his back basket cases um so he’s put 600 people on cyclosporn he said almost every single one of them has done really really well except for the people that were so worried about cyclosporine they did poorly because they were so stressed out the whole time so if you are

Really really worried about being on an immunosuppressant don’t do it i would recommend that as well if you just don’t feel at peace about trying this for yourself you know what just wait until you are at peace about it or like get more information until you are at peace about it but anyway don’t force yourself to be on something you don’t feel good about so

I did end up after talking with him feeling really good and really excited to be on cyclosporine so um the two things that he does not recommend are dupixent also known as dupilomab in methotrexate he said that they both do not help and especially had really negative things to say about dupixent because it is just so expensive it’s like 35 thousand dollars a

Year something to be on so your your dermatologist might want to shove you on that because obviously they’re going to get a really big kickback from dupixent slash duplicab to do that so just encouraging you from him like he encouraged me that like methotrexate and depicts aren’t probably going to be good options but he really has had a lot of success with

Cyclosporine there are two different kinds of cyclosporine there is modified and non-modified and modif non-modified is the older one and they modified it so that it is more bio-available so it’s however much your body can use of the medication is what’s bioavailable so he recommended for me to go on the non-modified version the older one i don’t know if it’s

Just because he is old and like he that’s the one that he started people out on and that’s what he’s continuing to have people on he didn’t sound like he was like super die hard on doing one or the other so definitely do whichever your doctor thinks is best for you so i’m on non-modified and i’m doing fine on that um there are supposedly concerns about being

Out in the sun with cyclosporine i think that’s maybe more of a concern with the modified version as well as i can understand it dr rapaport was not concerned about my being in the sun on the non-modified version so um i was able to be in the sun a little bit and that felt fine so i’m not worried about that obviously just monitoring it the other limitations

I will put below there are a lot of like herbal counter indications specifically with like licorice and chamomile which was heartbreaking for me i can really eat very little right now as far as i’ve just always have i’ve been really reactive to things and a couple chamomile tea has always been like my little happy thing in the day and now that i’m not cyclist

Born i can’t even have that so like i had a good cry about that but i will put that resource in the description box here as far as if you are a person that likes herbs and herbal medicine or just like licorice and chamomile and a few other like normal things have a counter indication with cyclosporine and then the other thing is grapefruit is a big no-no so

I don’t really care about grapefruit but the one time i was able to go out to eat in the last couple of months the only dairy-free option because i’m super super allergic to dairy the only dairy-free option for dessert was a grapefruit sorbet so i didn’t get dessert so it’s just those little moments that i’m sure you all can relate to that just build up and

Just make you not even feel like you’re able to be a person in this world anymore so anyway not to complain i’m just saying that it’s like a cute story hopefully you can all relate to that too so there are definitely some limitations with cyclosporine he said the dose that i’m on right now i’m only 114 pounds so that’s why i’m on i think what sounds like a

Little bit of a lower dose is just mildly immunosuppressive so i’m really super not concerned about being sick um i’m just doing what i’ve always been washing my hands and i don’t really get out much anyway so that’s not a big concern as far as like somebody coughing on me but it is definitely a component to be aware of that it is an immunosuppressant so i

Still think that i am healing on this it’s been definitely ups and downs since i’ve been on it but i don’t know how i would have handled even this past month without the slight help that cyclosport has been so once again i feel like i’m really one of the rare ones who hasn’t been helped a ton with cyclosporine once again it has been helpful but i think that

A lot of people are really really really helped by it so if you’re thinking about doing it definitely try it even for a month and to see how you feel about it your kidneys are not going to shut down in a month you’re not going to grow a weird body here in a month you can just see how you feel and i would definitely recommend trying it it’s not scary if you have

A doctor that you trust or a doctor that you can inform and talk through together who’s interested in listening so that’s been my experience i hope that’s helpful if you have any other questions about immunosuppressants with tsw let me know one other note too that the plan for me is i’ll be on this probably for at least a year one concern for me was is there

That i asked dr rappaport is there going to be any kind of rebound for me on cyclosporin after i get off of it and he said absolutely not it is something that you need to taper off of but once tsw has run its course you can just taper off of it and you’re not going to like re-get tsw or anything so that was really encouraging for me i’ve been really concerned

About the possible existence of like some kind of cyclosporine rebound but he says that is not so and with over 600 patients having taken it and having practiced medicine for over 50 years i totally trust him on that so let me know if you have any questions that i can answer i definitely have been happy with it i could be happier but yeah i really wanted to

Give you guys more resources so talk to you later

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TSW Talks: Cyclosporine & Immunosuppressants | FAQs, My Experience, & What You Need to Know By TSW Girl