Has anyone here had this treatment at the Brompton? I’ve been referred by a consultant there to a colleague but am still waiting since July ‘21. Every couple of weeks I have another infection. I have forgotten what it is like to get a proper nights sleep !
Does anyone know how long this treatment takes ?
Please help.
Have you kept the department you have been referred to of how you are? I would also keep the referring consultant updated and ask your GP to write to them too. I would say it is better to write a letter telling the consultants involved about the health issues you are having and that you are exhausted. A letter is tangible and will be added to your notes whereas a phone call may only be recorded briefly by non medical staff.
You’ll probably see Dr Kelleher and Dr José. They’re great. Here’s a link to the immunology clinic. Their secretaries’ numbers are listed so you could try phoning them to ask about your appointment.
rbht.nhs.uk/our-services/lu...
Thank you.
This therapy has been suggested to me but atm the docs have delay it because I haven’t had so many infections over the pandemic. I’ve been shielding. The infusions will be tailored to you. So, you might have to spend half a day or a day on Lind Ward for 3-4 weeks, and if the infusions seem to be working, you can have a port fitted & learn to do them at home. This was how it was explained to me anyway. I think most people find it life-changing, not to have constant infections.
Hi 
Do you know if it’s immunotherapy (normally allergy related), immunoglobulins (normally immune system and infection related) or for biologic therapy for asthma?
I don’t know much about immunotherapy for allergies but can potentially help with the other two!
I believe it’s some kind of therapy for repeated infections. Have you had it ?
Yes I’m on immunoglobulin replacement normally there’s some tests to be done first (they might have done them already) - firstly they check the levels of immunoglobulins in your blood to see if they’re low. Then they normally test how your immune system responds to a vaccine, if it doesn’t respond very well then they often consider immunoglobulins. They might also try putting you on a long-term antibiotic first if they haven’t tried that yet too.
Then the immunoglobulins can either be IV in hospital every 3 weeks or so (this takes about half a day) or you can do training to administer them under the skin yourself at home (a couple of hours every week, with a smaller amount given at a time). The choice normally depends partly on you and also on what supply they have.
I’ve been on the infusions at home for about 2 years now and they’ve made a massive difference to me! I used to be in hospital with pneumonia and my asthma pretty much every month but now probably have around 4 “bad” infections a year now.
In terms of how long you stay on them it depends on the cause of the problem and how much they help. You get reviewed every year to make sure the dose is ok etc and if they think it’s caused by something like steroids and you’re doing better they might consider a trial off of them.
That’s great, I’m so pleased it works for you
I’m so glad it works for you. Hopefully I will get the same outcome. Thank you for all your help, I really appreciate it.
If they want to see how my body reacts to vaccines I am wondering whether I should wait and not have the annual flu vaccine that is being offered at the moment. Not really sure what to do for the best.
I think they tend to say to get the flu vaccine as normal, as they don’t test the response to it and it’s not normally part of the assessment as far as I know.
I know my immunology team say that all of their patients with immune deficiencies should get it because even if your body doesn’t mount a “full” response some protection is better than none. But if you’re unsure just check with your GP or respiratory team
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