I noticed looking back at some older posts that quite a few people are on subcut therapy. Having had all my brochs and lung function tests repeated due to moving to a new county and hence a new hospital again I have been told that there is little options at the moment. Prophylatic antibs not possible as no infection to fight, methotrexate not allowed, omalizumab not allowed due to too few hospital admissions (I pride myself in this, they don't get it). The one thing they haven't mentioned again is subcut ventolin, probably because I shot them down before they even finsihed saying it when they did!
My main concern (apart from uncontrollable needle phobia) is being considered too high a risk and being umemployable in my field. I am a primary teacher, teaching 7 year olds in mainstream schools, but at the moment we have some very vulnerable children that often physically attack and that I sometimes need to restrain.
Just wondered what other do with regards to work and sub cut therapy.
Even though there might not be a infection some antibiotics can be used for there anti-inflamtory properties they can also try Xiolair off list I heard (dont quote me on this though). Also have you tried theophylline?
I know someone who works as a teaching assistant in Learning Disability school with sub-cut and as far as Iam aware shes been fine. I think its just making sure its secured
Thanks Bizkid,
I have tried theophylline but resulted in over dilated blood vessels in head and permanent nosebleeds so that was stopped. Tried montelukast but no good effects just achy knees. Just been given Kenalog injection to see if controlling hayfever controls asthma better so guess need to give that time to work first. Have obviously been through the full rainbow of inhalers they are just looking for something to reduce my steroid intake (inhaled and oral)
Yeah I dont bother asking about the rainbow of inhalers most people when get to the stage of subcut then been through those! I know there are other immunosuppresents out there, not just methotraxate. Azathioprine was mentioned to me through not normally used for asthma my team been using it and has less of the problems than methotraxate. Have to tried diffenet antihsitamines I had allot of problems with allergies making my asthma worse and ended up once found the right one helped allot.
subcut ventolin no good for me as i dont respond to it iv, makes me worse :S
Nicola- just a thought not related to subcut ventolin! If you haven't had the necessary numbers of hospital admissions I thought that you could get omalizumab if you had to be on oral steroids all the time. I am sure that Kenalog would count. It might be worth asking about, though policies may vary in different areas.
I use s/c ventolin (Most people use Bricanyl) and there may be ways to secure your pump & line in bags under clothing out of the way. I have been known to rock climb and abseil while using s/c infusions!
I currently work p/t on permitted work scheme. I also volunteer for St John Amb, though these days a more passive mode. Though years ago, I did front line first aid at large pop concerts, complete with s/c infusion ! The only problems I had were needle problems from too much activity and then the needles were the metal butterflies. Now most people use the soft set type ones which work like venflons, just plastic flexible needle left in place. As long as you use extra tape over them, most stay in place, when active & sweatty!
Hope this helps a bit.
Kate
Thanks for replies,
I think the logical part of my brain knows that I need to find something better than oral or IM steroids or indeed so much inhaled but the scared part heard needles and ran!
It is encouraging to know that you can still be so active and that it shouldn't cause me a problem in that way, obviously my mind flashed straight to images of restraining a child and having it ripped out in something of a blood bath! lol
I have trrid all antihistamines and nasal sprays too as someone suggested and eneded up on fexofenadine 180 which still wasn't working, henbece resorting to Kenalog.
I am seen at Southampton General by Prof Howarth so I think witth the amount of requests they have for Omalizumab they can be pretty stringent in their choices of who to give a go. There is something about my IgE level changing too, which they are trying to tell me is not possible but the results of the last three blood tests suggest it is happening!!
I thought they were recommending this bcause I am soooo repsonsive to ventolin inhalers and nebulisers and ping back up really well (and back down after about 3 and half hours!!!). Is there a suggestion that I might not respond as well to this as I do the inhaled versions?
I am half way through a trial of Xolair which was quite a struggle to get on. To get a trial of 16 weeks you have to have severe persistent allergic asthma and meet all of the NICE (National Institute for Health and Clinical Excellence) guidelines which there are a few!! Depending on your weight and your IgE levels you will be given an injection every 2 - 4 weeks if things improve dramatically you may get to stay on it after the 16 weeks. I am needle phobic as well and what they didn't tell me was that it was two injections every time and I am having them every 2 weeks! There is also a massive cost implication as a 375mg dose every 2 weeks for a year costs £15,400 plus VAT so it normally has to be approved through your local PCT.
I am on sub cut Terbutaline (Brycanyl) and manage with the butterfly needles although some days are a bit of a struggle! I think because I have control of the needle that helps to overcome the phobia but I know it is not easy. I hate it when doctors just pass you off for having a ""silly phobia""
I hope you soon start to sort things out.
Dawn
THank you Dawn,
I know that Southampton won't give me Omalizumab, RD&E in Exeter were going to start it but I told them I was moving - stupid me! They have me registered as having severe allergic asthma that has only got worse in the last 5 years and is brittle, (can't work out which type though, was probably told once or 70 times!).
I am in some very strange kind of awe of you with regards to the whole needle thing but really don't think that would work, I have to have my flu jab from under a blanket and it takes one nurse to get me and one to stop me flipping myself off the bed, my GPs are amazing but I don't think I could cope with that to honest. Atleast I know though and my consultant has seen my reactions when she cannulated me and did bloods at my bronch - I kicked her and passed out! My poor mother nearly died of embarrasment lol
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New to subcut - any advice
Lots of Ventolin affecting voice?
