Ciclosporin

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I suffer with Chronic Urticaria and have recently been prescribed Ciclosporin at a dose of `just under 4mg/kg per day. I am taking 2 daily doses of 175mg.

This is on top of upto 4 x 180mg Fexofenadine, 10mg of Montelukast and Chlorphenamine.

This is for 6 months during which time I will need to have blood tests every fortnight as well as fortnightly visits to my GP for blood pressure checks and urine analysis.

I was wondering if anyone else has been prescribed Ciclosporine for Urticaria?

If so how long did it take before you started to notice an improvement in your condition?

What side effects did/do you experience?

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14 Replies

  • Posted

    Good Morning Madeinholt

    Yes, I too am on cyclosporine and have for the past few months.  They have upped it to 200mg a day.  I take one 100mg in the morning and one at night as I breakout more at night.  The doctors added prednisone again and am on a very slow taper.  I was taking fexofinadine but stopped that on my own while the prednisone was helping.  I am going to a Vasculitis specialist this Tuesday to discuss if I also have urticaria Vasculitis and what dosage they recommend.  I want to try to go off all these meds and get help naturally if possible acupuncture and natural remedies as they are better for our bodies. My urticaria is.....was......severe. The new Xolair injections only worked for the first week or so then stopped......I'm okay with stopping as my hair was falling out which was very upsetting on top of suffering with hives!  I live in the USA.

    so you are taking 350mg a day?  The key is to get the hives to go into remission.  I've had this two other times in my life both times lasting two years with A decade in between with no hives.  I am now 64 and this time is much harder to get under control.....guess being older is not helping😊 .  How severe is your urticaria and what is your history with it? Let's keep in touch as you are the only other blogger that is on these meds.  I wish you well!

    Wendy

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    • Posted

      Hi Wendy,

      This is my second bout of Urticaria in 4 years, the first lasted for 6 months and I got this second nasty eruption back in July/August of this year. The recent outbreak cleared within 24hrs after my GP prescribed a 30mg daily dose of Prednisolone for 5 days. After that it came back so I had been taking Prednisolone again from 10mg a day and gradually reducing by 1mg a day each week. On top of the still current antihistamines I was also taking 2 x 150mg Ranitidine a day (Ranitidine interacts with Ciclosporin so that has now stopped).

      A daily 10mg dose of Montelukast was added after my first visit to see a Dermatologist in September.  Following this weeks visit to the Dermatologist (and after lots of blood tests etc.) she prescribed the Ciclosporin.

      I finish the 1mg daily of Prednisolone on Monday.

      Since starting the Ciclosporin on Tuesday evening, I have been experiencing feeling sick, headaches, joint aches and general lethargy. Did you get any of this to begin with?

      Chris

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    • Posted

      Did your doctor slowly put you on the cyclosporine.  I started on 50 mg for a time then 100 for couple weeks then 150 then the 200mg...slowly.  If your doctor didn't do that to you maybe that is why you are having these side affects.....to much too soon.  I don't know if your mugs are the same as our here in the US?  Do you know what your trigger might be to have caused the hives?  I believe mine is stress
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    • Posted

      I was straight in at 350mg a day with a view to reduce gradually over the next 6 months.  First couple of days were OK, but yesterday and this morning I felt like a zombie. The Urticaria has been pretty non-existent though so I hope these are only adjustment wobbles.

      No known triggers with mine, except that they occured on almost the same day 4 years apart. The only common theme is the time of year.

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    • Posted

      Hello Madeinholt

      How are you doing with your medications and urticaria? I hope you are doing well.  I am still in the 100mg of cyclosporine in the am and 100 in the evening.  I am down to 7mg this week on my Prednisone taper and will go down to 6mg for next week.  I am still hive free.  The doctor wants me to stay on 5 mg of Prednisone when I get there for a couple weeks then slowly go off the cyclosporine.........praying that the hives will go into remission!!  Ann mentioned taking methotrexate being safer...Ill have to ask my doctor about that.  I have not needed to take antihistamines or any other meds which is good.

      Looking forward to hearing from you!

      Take good care!

      Wendy

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  • Posted

    Hi

    I was on ciclosporine for 6 months along with 1 decode medina and loretedine and because being hivey made me depressed l also went on dice pin antidepressant. This worked for me but l know it doesn't for everyone. Alongside diet change to treat leaky gut which l had it took about two weeks for a reduction and this kept going the longer l was on it. I had to have blood tests and blood pressure throughout 6 months. I was lucky and didn't have side effects except some headaches.

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    • Posted

      Hi Lorraine,

      How high was your Ciclosporine dose and was this reduced at all during the 6 months your were taking it?

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    • Posted

      It was 100mgs. My specialist said l could only be on it 6 months. I actually chose how to come off it. I suggested 2 weeks at 75mg then 2 weeks at 5mgs then 2 weeks at 25mgs. I was worried at each drop but I was lucky it worked. I have continued with antihistames and the dozepin
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  • Posted

    Sorry l meant fexofenidine iPod sent wrong word. I have found that my CIU was not as bad as a lot of you out there and l hope you find the right meds for yours.
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  • Posted

    I discussed it with my rheumatologist allergist but she prefers methotrexate because it's safer. Then after 6 months, she also gave me plaquenil. During that time I got off all antihistamines.

    Please note my hives are autoimmune related.

    Good luck to you!

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    • Posted

      Hello Ann!

      How are you doing?  I hope you are hive free. Did you try the methotrexate that you mentioned.  I believe that one was on the list of possibles for medications.  Would love to hear how you are.

      take good care

      Wendy

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    • Posted

      Hi Wendy,

      Methotrexate worked very well for me. Within a day or two I was hive free. I was given methotrexate over cyclosporine by my doctor because she said it was a bit safer. I have been medicine free since April 2015. In the past, I would be in remission for months sometimes up to a couple of years, so I don't fully know if my hives are gone for good. Fingers crossed.

      Hope this helps!

      Ann

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