anyone recommend subcut?

Having spent the weekend worrying whether to allow my son to have Cyclosporin I have come to the conclusion it might be worth asking about Subcut Bricanyl. RBH have suggested trying a steroid sparing agent before subcut but I am having probs getting my head around the idea, especially with the current swine flu situation.

The more info I have the better informed I will be to make a decision - any advice welcome, side effects, how uncomfortable is it, how well does it work etc.....

Am hoping to speak to RBH on Tuesday so hopefully will get responses by then.

Thanks in advance.

Nikki

3 Replies

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  • There have been quite a few people having problems with sub cut at the moment, mainly due to the impact on the heart. I heard RBH were reviewing sub cut on the adult side they may well be doing the same on the paeds too. To be honest I would mention it but carrying around a pump, siting the needle etc is a pain in the bum, for me it worked fanstastically did just what it was supposed to do but if there were any other way to get the same result I would take it.

    Bex

  • Hi Koolcut, I tried Cyclosoporsin for my Asthma and it didn't help, not to say that it won't help your son though. Instead I use sub cut Bricanyl and yes things don't always run smoothly with it but if I compare my life to before Sub Cut it as been a huge improvement. RBH helped put me on this road and I can only say they were great. But like Bex it can have its issues like fast heartrate and re siting needles can be a pain, but if you do go down this road sof sets are better as just a little tube is left under the skin and the needle removed as opposed to a butterfly needle.

    Don't dismiss Cyclosoporin purely on the grounds of your Swine Flu concerns, of course a suppressed immune system is not good but if your son takes oral steriods alot this is already an issue. My best advice is check out all possibilities, getting as much expert advice as possible and then make an informed choice.

  • Thanks Bex and Katina

    Both myself and my my son are a little fed up at the moment (not with RBH but just the situation). He spent 3 month trying Azithromycin, a further 8 months trialing Xolair and 4 months on IVIG (Intravenous immunoglobulin) and so far there has been no improvement. He is on 40mg Pred more often than not and I don't think he's got below 25mg a day during the past 6 months.

    He responds well to Salbutamol but needs it very frequently to keep him well. He hovers just below 50% (fev1) most of the time and only has a good lung function with 2 hourly nebs. For example - he was struggling for a few weeks on 40mg Pred and was needing 10 puffs of Ventolin every few hours. He had an 80mg Triamcinolone injection as well and was still needing regular Ventolin. In the end we went to our local and he had burst therapy followed by 2 hourly till the next day and his pf was up from 150 to 350. He was switched back to inhalers (4 hourly/10 puffs) and was back down to a 180 pf within 24 hours.

    I must admit I am reluctant to put him through another 4 month trial with no guarantee it will make a difference. My understanding of Subcut is that if it will help it will do so fairly quickly. WE have talked about it and he seems ok with the idea. He just wants some of his life back. His school are scared of him and send him home at any given opportunity so his attendance is now down to 50%. He starts his GCSE's in September (his school are starting them in yr 9) and I really don't want him missing so much again.

    I am going to speak to his resp nurse tomorrow to see what she thinks and then RBH on Tuesday. I just think the more I can find out about both meds will help me come to a decision.

    Thanks

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