back online but new medicine worries me...

hellooooo again folks, havent been on for ages, michael has been very up and down recently. he isnt in hospital as much but he is more symptomatic. he used to be really well between admissions but now hes just pretty unwell all the time.

we were at clinic today and they are goin to start him on cyclosporin...im not too sure what this is, only that it is usually an anti rejection drug for people who have had transplants. its gotten me really nervous and id really love it if anyone could give me any sort of info or personal experiences on this drug.

he also takes flixotide, serevent, atrovent, sodium chromoglycate(tab and inhalor) singulair, cetirizine, azithromycin and obviously salbutamol as required (which is usually 2x during the day and 2x at night)

he is needing alot more care now, he doesnt sleep well at night and his sats havent gone above 94 even awake for over 4 months so if this drug is going to help then im all for it, whatever is going to make his life easier...he starts school in August and it would be great if he could be more controlled and not using his mobility pushchair etc...

anyway, i hope your all doing ok at the mo!

kirsten x

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Hi Kirsten, and welcome back. Sorry to hear things aren't so good with Michael at the moment. No personal experiences from me, I'm afraid, but I know Julie's son, Sean, has been on cyclosporin. Unfortunately Sean's a la Costa at present, but I'm sure when he's a bit better Julie will be back to give her perspective on cyclosporin.

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thanks very much...its great to be back catching up on everyone!!!!

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Hi Kirsten,

Sorry to hear that Michael is not doing to good at the moment.

If it is any help, I have posted some comments on cyclosporin (under the heading titled Immunomodulation Treatments) located at the foot of the Basic Guide to Immunology thread under Medical. Being a mild asthmatic, I haven’t personally taken this med so I can’t really offer further comment/advice.

Take hair,

Derek

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Sorry for slow response, I assume Michael has already started ciclosporin , hows it going? Sean's con at RBh started him on this drug last July, after reading all the possible side effects I felt like we were jumping off a cliff into unknown!!

Sean only had a couple of blips in July, August and sept and we all became very hopeful that we had found a drug that worked. Unfortunatly Sean then hit a really unstable phase , he has had 7 admissions to Hdu unit since Nov. At the end of January this year he con decided to stop the drug for two reasons a) the steriod dose was still sky high so drug not working as well as could, B) we had problems with Seans levels in blood which kept flucuating. Sean had a seizure on xmas day that con isnt sure if it was caused by ciclosporin or slo phyllin as both drugs hit toxic levels in his blood within a couple of days hence he stopped both drugs. Sean had no other side effects from the drug.This week Sean has now been started on aziathropine which is another steriod sparng agent which works in a similiar way to ciclosporin.

I hope michael gets on ok with Ciclosporin and it can ease some of his symptoms.

J x

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he hasnt started it yet, the consultants are conferring this week to decide for definate if this is theright course of action. i think theyre concerened cos of his age, must have been the same with u guys! michael hasny had that many admissions recently (bout one every 6 weeks) but he is not maintaining his sats very well and doesnt really have good days, which is why we really hope that this will hepl him and get him a little more independance, he still uses his mobillity pushchair! hope this new med works foryou, keep me informed!!

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docs undecided

hi again, just a quick post to keep you up to date...saw the big man on friday, and he decided that cyclosporin is certainly a viable option for the future but he wanted to try a few things first

michael now takes 8mg singulair instead of 4mg

he takes azithromycin every day instead of 3 times a week

his pred dose has been increades from 5mg alternate days to 20mg alternate days.

to me this is more of a change than starting a new med and im very worried about the increase in pred. hes still not good with any type of exertion and is waking most nights, maybe i havent given them a chance to kick in yet...

any thoughts and opinions would be much appreciated, im stressing out here!!