Ciclosporin and travelling overseas

Posted Thu 5 Oct 2023 13.24 by McMum

Hi, new here so sorry if this is the wrong place to ask. My 19 year son is stable on Ciclosporin (100mg twice a day) but has plans to go travelling. I asked for advice at his 3 month check-up today but they weren’t much help. I asked if he could get a repeat prescription while he was away, but was told he would need to come home every 3 months for a blood test. Does anyone have any experience of travelling or being overseas for an extended period of time while on Ciclosporin please? I’m also curious about how sniffer dogs might react to the distinctive smell the capsules give off too! Thanks in advance

Posted Thu 5 Oct 2023 14.23 by PrincessDi

If this is a prescribed medication I wouldn't think he would have any trouble, just make sure he has doctor's info etc. Also, I see no reason why he couldn't have his blood tests done in another country if the doctor would give him a written order. Sounds like they're being difficult.

Posted Thu 5 Oct 2023 15.56 by andrea
have had p for too many years

Hi my son was on embrel injections in UK and decided to live in Holland. He could not get his meds or be treated for psoriasis until his medical notes arrived from UK which took a couple of months. You need to register with a local DR first. Or come home every 3 months.

Posted Thu 5 Oct 2023 16.00 by McMum

Thanks Andrea, my son is hoping to travel rather than move to a specific place, I truly hope he is able to. His whole future career path of joining the Royal Navy as an engineer and seeing the world was wiped out by psoriasis, it’s been a very difficult time mentally as much as physically. If he is unable to travel independently I don’t know what he’ll do.

Posted Thu 5 Oct 2023 16.12 by andrea
have had p for too many years

It’s very unfortunate that it’s difficult to have a life depended on drugs such as these as they are controlled. Not all countries will be aware of what he is on especially if they are rather remote. It may be that he can try an alternative way to treat himself. Hanna Sillitoe has a book Radient and has been very successful in clearing her psoriasis through diet. Look her up on Instagram and she will answer any questions. A diet change may help and will be the easiest option along with sunlight and moisturising. Coconut oil is good and not expensive. Also soaking in oat baths which is cheap and easy to do while travelling.

Posted Thu 5 Oct 2023 16.15 by McMum

Thanks, I will look that up. So hard explaining to a young person that their life is basically on hold.

Posted Thu 5 Oct 2023 16.47 by andrea
have had p for too many years

I understand this it is heartbreaking. My son hadn’t got his meds as he didn’t register with a doc straight away and has a really extreme flare up and now won’t leave his flat. He has now got sorted and is on high dose of methotrexate. It will take a few weeks to see if it works and then he may go back on injections . Stopping meds gradually is what he ought to have done. Also using topical steroids and just stopping is not a good thing to do. Just saying the extremities of this problem.

Posted Thu 5 Oct 2023 16.51 by McMum

Sorry your son is suffering, hopefully the methotrexate will kick in soon. Thankfully my son only uses scalp treatment occasionally now, the Ciclosporin is, touch wood, keeping the rest on his face and body at bay. He should’ve tried tapering off the Ciclosporin I think but never gave it a thought. It is such a cruel condition.

Posted Thu 5 Oct 2023 17.00 by andrea
have had p for too many years

Yes it is a life long condition which so many people have to deal with. I’ve had it since I was 7 and I’m now 59. Methotrexate has given me a life line. Also UVB phototherapy and going in the sun helps. Your son could have 3 months or more of fabulous travels and see how he gets on. The world is getting smaller and he could come back for his blood test & meds and go travelling again!! Just plan ahead!

Posted Thu 5 Oct 2023 17.05 by McMum

So glad methotrexate is working for you - my husband takes it via a pen for psoriatic arthritis, ironically diagnosed after my son developed psoriasis. Unfortunately the UV treatment didn’t work for my son, nor did Acitretin, but fingers crossed the Ciclosporin is doing the trick. A good dose of sunshine would do him a power of good in more ways than one.

Posted Thu 5 Oct 2023 17.29 by andrea
have had p for too many years

I’m so glad your son has had good results. It’s strange that what works for one doesn’t work for others. I do hope your son finds a way to travel and manage his psoriasis. I wish him all the best.

Posted Sat 21 Oct 2023 11.41 by lizziep (edited Sat 21 Oct 2023 11.42 by lizziep)

McMum - When I was on cyclosporin, I used to take it in the summer, let my psoriasis come back over the winter and then start again the next spring - so 6 months off - it didnt change the effectiveness at all. Perhaps your son shouldnt worry too much about a break - although I agree with Anthea that flying back for a few days every three months would mean you could see him and he would get his meds!

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