Cyclosporin

Hi Folks,

In a sudden turn around my dermatologist has said he wants to try me on Cyclosporin for my urticaria and dermographism for 4 months(last appointment before xmas he said 'urticaria is idiopathic. live with it. keep popping the antihistamines, it might go away one day. maybe.'). Ive had the Urticaria and dermog. for 3 1/2 yrs now and need double the licenced dose of anti histamines to keep it at an acceptable level- im very keen to try anything that might possibly calm it down long term as you cant take the antihistamines im prescribed during pregnancy, let alone at the levels i take them.

Since last summer my asthma has been uncontrolled and im about to go to the difficult asthma clinic at southampton in 2 weeks. My cons want them to look at what is going on with my allergy system as the level of urticaria and the sudden difficult asthma puzzles them. Ive just got off Pred having been on it most of the time since July.

I know Cyclosporin is used in difficult asthma cases, and depending on what happens with the difficult asthma clinic im keen to give it a go and see what it does for the urticaria and perhaps as a side effect my asthma may calm down too.

Has anyone got any personal experience of using Cyclosporin? What form does it come in? does it have many side effects? Do you need regular check ups whilst you take it? Did it help your asthma and did they have to adjust your inhalers at all whilst taking it? (i know it can effect steroid levels in the body.

Thanks, x

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Cyclosporin

Hi Sealfheal,

I went to the chest clinic yesterday and saw a new Consultant as my old one has just retired and he mentioned trying Cyclosporin as my asthma is difficult to control. He spent a few minutes reading out the long list of nasty side effects but it didn't put me off and said I am willing to try anything and don't have anything to lose. He has put me on long term steroids first starting off at 25 mgs a day and reducing down to 10 mgs to the 4th of March. I go back in three weeks and will discuss further the possibility of starting Cyclosporin in a bid to prevent my immune system over reacting all the time. I will let you know if I do start it and how I get on.

Keep well.

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Hi Selfheal

I currently take Cyclosporin for chronic idiopathic urticaria and anaphylaxis and have experienced some success with it. I've been on it since July 2009 and started off on a dose of just 50mg a day and slowly increased it to 200mg a day over the course of about 8 weeks. At first I thought it wasn't doing anything for my urticaria as I had 5 admissions with severe urticaria and angioedema between July and October. I then experienced a 4 month gap in urticaria flare ups from October 2009 until a week ago when for an unknown reason my urticaria returned and I tipped over the edge into anaphylaxis last Saturday morning. Even though it is back at the moment it's not as aggressive as it has been and I needed less treatment in hospital to bring it under control this time.

In terms of side effects the only problem I've had is feeling very sick on 200mg but this was a gradual thing and in December we reduced the dose to 150mg a day - 50mg am and 100mg pm. I'm not sure if my consultant will want to try me back on the 200mg dose following my recent admission. I seem to be flaring up again today so I'm keeping a close eye on things. I too suffer from dermatographism and it is particularly bad today, I can write my name on my tummy!

It has had a very positive effect on my asthma, I'm much more stable and require a lot less short courses of pred now I'm on the cyclosporin. I haven't really been able to reduce any meds because of it but I've had longer gaps between flare ups.

Initially I had bloods checked every 2 weeks for liver and kidney function and then after a couple of months it was increased to every 4 weeks. I haven't had any problems with my blood results. I see my consultant immunologist every 4 weeks in Leeds and I also have my blood pressure checked weekly as it began to spike in December and it's something to watch when on Cyclosporin apparently. It's settled again since the reduction in dose.

Another thing I will mention is that I have managed to secure Xolair funding for my asthma and urticaria. This is my consultants next plan of action if I continue to have flare ups.

Hope this helps - pm me if you have any questions.

Lucy