Funding of treatment

Apologies if this sounds like a moaning e-mail but I'm at my wits end.

I've had a fungal infection now for over 18 months and due to tolerance problems and the bug becoming resistant to the normal treatment, I need IV drugs for 6 months. The specialist team looking after me has applied to my pct for the funding for the treatment but all it seems I can do is wait for an answer. They have already come back asking for more info which was supplied with the intial application so at the moment I'm in the position of waiting for a response to the additional info we supplied.

The drug is expensive and I know the infection isn't life threatening but it is life limiting. I currently not working but my husband is just waiting to hear if he is going to be made redundant so one of needs to be working.

Does anyone know how you would go about getting hold of a drug your specialist recommended and getting it administered? I'm so fed up with waiting we are trying to find other ways to get the drug quicker as I stand a better chance of getting a job than my husband( works in financial sector!). I need to be clear of the fungal infection as I normally work in pharmaceutical manufacture, not to mention the worry I have of not being able to get close to people because I worried my breath smells. I'm also getting sicker as time goes on and keep on getting admitted to hospital because I'm being sick & can't keep my steroids down. If I'm lucky depending on which hospital I go to I can sometimes get a one off course of treatment which makes me better for about 5 weeks. I've spent 36 nights in hospital this year due to this problem and not my asthma for a change!.

We asked if we could pay towards the drug and were told you either pay for all the treatment or none of it. I know others on here have had trouble getting Xolair and the like and wondered if there was anyone who had any advice on how I might get my treatment sooner.

Hope everyone else is doing OK and enjoying the extra day off this week.

Take care

Rabbit

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I think u may have two options 1. Contact ur local mp asking if he is able to support your need for treatment, by asking them to contact your pct asking gor a speedier descision . 2 . Contact the press informing them of your illness and delay in a response from pct. Hope u get the treatment soon

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Funding of treatment

Thanks for the advice. Didn't really want to go to the press because I'm embarassed about the type of infection I've got. I know many asthmatics get thrush at some time but because its moved to my oesphagus it more commonly associated with people who are HIV positive or have AIDS. I lost count of the number of HIV tests I've had and now think the people asking for them are more embaassed than me.

I just want to get rid of it, was told on friday that until I get off prednisolone the chances of it going are minimal. As I've been trying to do that for the past 5 years don't think thats very unlikely soon. Am now at the lowest dose I've been on since 2007 so moving in the right direction.

I know its not life threatening but its stopping me doing the job I trained to do and makes work in other areas difficult. Feedback from the few interviews I've have been for has all mentioned that I tended to hide my mouth with my hands and came across as aloof as I didn't want to get too close to anyone in case my breath smelt. I'm now scared with all the government talk of getting people off benefits that I'm going to lose what financial help I do get. All the hospital admissions I've had since being diagnosed must surely be more costly than the treatment proposed. I must be of more benefit to the country if I'm working and actually contributing. I want to work and hate being in this situation.

I've now seen the response from my PCT and am amazed, they are suggesting either an oral medication that isn't licenced or an oral medication that is more expensive than the IV treatment. I just can't understand the logic which is being applied. I'm scared as the usual signs of the thrush getting out of control are starting again and just know if I don't do something I'll end up being admitted again for not keeping my steroids down. Doesn't help that I've just started on 7% saline to try and help clear the muck from my chest. Throat is so sore from either coughing or being sick.

Apologies for the rant, people on here are the only ones who understand what its like to have to live with the side effects of a drug which you need to keep you breathing. I'd give anything to be back in 2005 when I thought life with asthma was tough then. That was a walk in the park compared to now.

Hope everyone else isn't suffering too much and managing to enjoy the bank holiday. If I hear nothing by the end of September I will take the advice and contact my MP.

Take care

Rabbit

[KateMoss]

Just a thought,

not regarding funding but the infection, a friend of mine has had similar problems (other infections) , was tested for HIV just in case etc. But was in the end found to have some form of immune deficiency.

Have they looked at all these options?

I can sympathise with thrush in oesophagus, I have to be carefull eating sugary things as that really makes it flare up, plus I am on permanent pred.

I hope you can get funding, it does make you feel grotty etc.

Take care

Kate