Just started cyclosporine for CU and I'd like to know when to expect relief and when the side effect

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Hi,

I just started CsA at 300mg daily. The goal is to get to 500mg daily as my doc wants to dose me at 5mg/my (I weigh 230lbs or 104kg). My first question to those who've been on this drug for cholinergic urticaria/any other forms of chronic urticaria is when did you experience symptom relief. Please note I am not taking any other drugs like steroids or antihistamines. Second question relates to the bloated, nausea and dull tummy ache within 1 hr of taking just 1 pill. Is this normal? If so, does this side effect eventually diminish in severity? Also, are there any tips to mitigate the gastrointestinal side effects such as eating with solid food, yoghure, etc?

Finally do the pills have to be so huge?? Goodness gracious :-)

Thanks guys

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  • Posted

    I haven't got cholinergic urticaria so my reaction to cyclosporine is probably different. I had no side effects from taking it but I was only on 100mg and I noticed a relief within 1 - 2 weeks not a full clearing of the hives but the start. I was on it six months then came off it by reducing 25mgs every two weeks and finished after six weeks. I understand as its a very strong drug some people may have different reactions to it. I am sure you will tell your specialist about the bloating because the drug can affect liver and kidney function. Goodluck
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  • Posted

    Hello

    Due to severe Chronic Urticaria the doctors started me on 100mg of Cyclosporine for a couple of weeks..did not help so I was bumped up to 150mg for a time then 200.  Since I was still not hive free I had the option to go up higher on the cyclosporine or add prednisone which worked for me in the past. So I added the prednisone and became hive free and have been for several months as I'm on a very slow taper..I have been on 5mg for the last 3 weeks. I am due to slowly go off the cyclosporine starting Monday...and pray that hives will stay away.

    Maybe starting at 300mg is too harsh on your body.

    I think slowly or gradual is the key to lesson side effects on Cyclosporine.  I have not had side affects on it. I am on double the dosage than Lorraine was on.  make sure you let your doctor know about your side effects and ask about going slower while upping dosage.  Checking your blood is important as well every several weeks.

    Please keep us posted!

    I wish you well.

    Wendy

    Are you in the UK?

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    • Posted

      No side effects today and I hope it stays that way. I hope I don't have to add any more meds. Went on a prednisone taper 100 mg 3x and it did nothing hence why I pressured the doc into trying ciclosporine. I already have some relief but only like 20%: I can sorta cough and laugh now without my skin feeling like it's being attacked by fire ants 3 days in so I'm keeping my fingers crossed. Don't let my spelling of cyclospe fool you, blame autocowreck for that. I live in the US
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