FAQs
- I have just had to switch my immunoglobulin product and concerned that I will have to do so again. Is this possible?
- Who can I contact if I want to discuss my treatment?
- How do I ensure I’m doing home therapy safely?
- What if I want to go on holiday?
- How do hospitals ensure they don’t run out of immunoglobulin?
- What products are available?
- Is it possible I don’t need immunoglobulin any more?
- Why is it important to record the batches of immunoglobulin?
- What kind of follow-up should I expect if I start immunoglobulin?
- What do the manufacturers do to make sure there are no infections in the immunoglobulin?
- Are there any other safety problems with immunoglobulin?
- I heard that some people have reactions to immunoglobulins
- What tests do I need to have before starting immunoglobulin?
- Why do I need immunoglobulin?
- What is in the immunoglobulin?
- Will I be given the choice between intravenous or subcutaneous immunoglobulin?
- What is the difference between intravenous and subcutaneous immunoglobulin?
- What is immunoglobulin replacement therapy?
- My Mum has CVID and bronchiectasis. I had the BCG vaccination on Wednesday. I am currently at university, and I am meant to be returning home next weekend. However, I was wondering if I will be putting my mum at risk from the bacteria in the vaccine?
- I have CVID. My husband was going to get the shingles vaccine but was told that it might be risky or possibly contagious to me.
- The shingles vaccine has been recommended for 70-79 year olds by the Department of Health. What is the advice for the shingles vaccine in the elderly with PID?
- My daughter has a PID and is due to have the human papilloma virus (HPV) vaccine. Is there any problem with her having this immunisation?
- I have just started university and have a PID should I have the meningitis and septicaemia vaccines?
- Should all people with an immunodeficiency have the pneumococcal vaccine?
- My child has a PID and receives immunoglobulin (Ig) therapy should they have a pneumococcal immunisation and if so how much protection does it give against pneumonia?
- I was wondering if immunodeficiency patients in the UK get a vaccine for pneumococcal pneumonia offered by their GPs/ specialists or if they have to ask for it?
- Do you have any information on the pneumonia jab?
- My son has a PID and last year children in his class had the live Fluenz vaccine. My son had to be off school for two weeks. Can the live vaccine be passed on and is it still the case he should miss school?
- I have an immunodeficiency and get my flu jab every year but last year I got flu and wondered if it were possible that I caught flu from my daughter who received the live flu vaccine?
- I am giving the flu jab to a group of students and one of them has XLA, does he need to be segregated from the other students during playtime, lunch etc?
- I have a PID and been getting the annual flu jab for the last ten years. I’m now pregnant, should I still get it?
- Why should family members and contacts of a person with immunodeficiency get a flu jab?
- Am I okay as a PID patient if someone close to me in my family has live vaccines?
- My child has a PID, should they have the Fluenz vaccine?
- Is there any contraindication to being on immunoglobulin therapy and having immunisations using killed vaccines?
- Do I have to go to hospital for my infusions?
- Can immunoglobulin have side effects?
- How do I know that I am receiving immunoglobulin frequently enough and at the right quantity?
- Is there a link between developing keloid scars and having subcut immunoglobulin?
- I do my Ig therapy subcutaneously and have been really happy with that method, except sometimes I have itching at the site of insertion. What causes this and what can I do to avoid it?
- Does immunoglobulin therapy help prevent dementia?
- I have been on 3-weekly immunoglobulin infusions for a long-time. Will this make my veins brittle?
- Can anything be passed to me from the immunoglobulin and harm me?
- Why are my doctors trialling taking me off my immunoglobulin?
- I’m wondering about getting infusions privately and wondered how much it costs?
- What happens if a BMT match cannot be found within the family?
- Can parents be a bone marrow match and so a donor for their child?
- Why is BMT for adults more difficult than that for a child?
- Is BMT only possible for children with PID?
- Is a bone marrow transplant an option for people with CVID?
- Do all SCID children need to have conditioning before they have a BMT?
- How often can you do a bone marrow transplant (BMT) for a PID?
- Are payments taken before tax?
- What happens if I leave my job?
- Can I cancel payments whenever I want?
- Is there a minimum amount I have to give?
- How can I donate through my pay?
- I have just started university and have a PID should I have the meningitis and septicaemia vaccines?
- How do I get help with health costs for prescriptions etc?
- Historically what is the longest length of breaks between treatments that people have had before showing a decreased immunity?
- How long can a person go without immunoglobulin therapy before on average, a person’s immunity starts to drop?
- Can taking prophylactic antibiotics help avoid a person getting infected by COVID-19?
- Is there a link between PID and dementia?
- I have a PID. Should I tell my dentist and does this mean I should expect to receive antibiotics before treatment?
- I have a PID and have just started my periods. Is it OK to use tampons?
- I have a PID. Is it OK to have Botox injections?
- I have a PID and considering cosmetic surgery. What’s your advice?
- Is there any problem with having a pedicure or manicure when you have a PID?
- My child is at university and in the last few months have been too ill to complete exams and coursework. What can we do?
- I’m getting a lot of urinary infections and wondered if this could be because of my low IgA and low mannose binding lectin (MBL)?
- On a trip to see my GP recently they told me I was a very complicated patient. Do you have anything I could give them to help them help me?
- When I’m having a ‘poorly time I get chest pain which has been partly diagnosed as costochondritis. I also get what I imagine is lung pain but it is mainly felt in my back – why?
- I have a PID and I take antibiotics on a regular basis and I'm worried about developing antibiotic resistance. What advice can you give?
- Is it helpful to take probiotics when you are taking antibiotics?
- What are the pros and cons of taking prophylactic antibiotics versus taking ad hoc antibiotics i.e. when they are needed?
- My daughter has been on antibiotics for the last year but is still having recurrent infections. Her Paediatrician is referring her to an Immunologist and has suggested either different antibiotics or immunoglobulin infusions. Which treatment course would be best for her?
- There are a few different brands of immunoglobulin are they all the same, how do I know if I am receiving the best product?
- I am on immunoglobulin (Ig) therapy but I have been getting a lot of infections lately. Is this normal and why does this happen?
- How soon should I feel the effects of immunoglobulin therapy?
- Can I infuse whilst I have pneumonia?
- Why are my doctors trialling taking me off my immunoglobulin?
- Is there any contraindication to being on immunoglobulin therapy and having immunisations using killed vaccines?
- If I set up my infusion and then have to go out can I leave my infusion for a couple of hours?
- I am flying abroad and want to know if I should put my immunoglobulin in the hold of the plane?
- My son has a PID and gets very tired after his infusions, is this normal?
- I have just had to switch my immunoglobulin product and concerned that I will have to do so again. Is this possible?
- After several years of being on immunoglobulin infusions my consultant took me off them for a trial period and now refuses to put me back on them even though I’m never well and have constant chest infections and my lung capacity is poor. Is the reason my immunologist refuses to put me back on them due to cost? What should I do?
- Do you have information on travelling abroad with immunoglobulin?
- My son has an IgG and IgA deficiency with two weekly infusions of immunoglobulin via a Portocath. Up until recently he had his treatment on the paediatric ward in a single room which we were told was to reduce the chance of infection. He has now moved to adult services and is now having the treatment in the ambulatory ward. Is this safe?
- I started infusions about 6 months ago and have had my first infection over the weekend. Should I take the emergency antibiotics I have at home and then ring my immunology centre on Monday, or wait until Monday and get a doctors appointment?
- I've just started immunoglobulin therapy and was extremely tired the day after my infusion, is this normal?
