I was diagnosed with CLL in 2007 and had FCR in 2010/11, having only 5 of the six treatments. Prior to this I had been diagnosed with Psoriatic Arthritis in the hands which has spread to the knees and feet. The treatment for this is currently subcutaneous methotrexate (20mls) per week. Because of his I had the pneumovac injection which was said at the time to be life cover. However, 3 out of the last 4 years, over the winter periods, I have had pneumonia which has led to hospital admissions and IV antibiotics with stays lasting from 4 to 9 days (because of blood counts). Does anyone have any information of alternative vaccinations that could prevent this reoccurrence?
Although its not necessarily linked to my CLL, in July this year I got salmonella and campylobacter which led to kidney failure. I was on IV antibiotics and potassium for 7 days and a hospital stay for 14 days. Could I have got this because I have CLL and deficient immune system because of that and the methotrexate?
I would be interested to know if anyone else has had similar experiences?
Mick
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Mick491
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Are you receiving immunoglobin supplementation in the form of (IVIG) Intravenous immunoglobulin? If you key in CLL IVIG into search earlier community conversations about and by those on IVIG should come up. IVIG is given to patients to support a depleted immunity below are the recommendations issued to clinicians from the current UK Guidelines on the diagnosis, investigation and management of chronic lymphocytic leukaemia. Speak to your consultant about it. There are several members here who are on IVIG.
Recommendations: Grade B2
•Immunoglobulin replacement therapy should be considered as a means of reducing the incidence of bacterial infections in patients with a low serum IgG level who have experienced a previous major or recurrent minor bacterial infection despite optimal anti-bacterial prophylaxis.
•The goal should be to reduce the incidence of infection and the immunoglobulin dose should be adjusted accordingly.
•Patients should be reviewed regularly to evaluate the effectiveness of immunoglobulin replacement therapy and whether there is a continuing need for treatment.
•Patients who develop serious and/or recurrent infections despite antimicrobial prophylaxis and immunoglobulin replacement should be managed in conjunction with a microbiologist, infectious diseases specialist and/or immunologist.
Also:
Due to a dysfunctional immune system CLL patients may not mount a very good response to vaccination. The guidance recommends the use of conjugate vaccines.
some patients respond particularly if vaccinated early in the disease and if conjugate vaccines, particularly to Streptococcus pneumoniae (Prevenar) and Haemophilus influenzae B (Hib) are used (Hartkamp et al,2001; Sinisalo et al, 2011). Seasonal flu vaccination should also be given and for H1N1, two doses are advised (De Lavallade et al, 2011). The timing of vaccination in relation to treatments such as anti-CD20 antibody therapy, which deplete normal B cells, is also important. Failure to achieve protective antibody levels following seasonal and HINI influenza vaccination have been noted in patients with CLL and lymphomas vaccinated 2 weeks prior to, during or up to 6 months post-rituximab.
Ask your consultant how your subcutaneous methotrexate may impact if at all on your vaccinations and immunity too t. I am sure others with personal experience will chip in.
Mick491, you have had a rough time lately. I note that the Wikipedia entry for methotrexate states "The most common adverse effects include: ulcerative stomatitis (i.e. mouth ulcers- Neil), low white blood cell count and thus predisposition to infection." Your CLL diagnosis and possibly your FCR treatment could also be causative factors, but that's just my opinion from what I've read as I haven't had any medical training.
(Coincidentally, I've just read recently about the development and use of methotrexate to treat childhood leukaemia in "Emperor of all Maladies". This folic acid agonist has a very interesting history in the early development of chemotherapy.)
With regard to your excellent question on alternative vaccines for pneumonia, there has been some recent discussion on this site concerning pneumovax and prevnar13. We're still awaiting some clear guidelines from experts on what we should do to maximise our protection. Note also that there are many causes of pneumonia; the vaccines only provide protection the most common bacterial causes; see:
I am aware of the large variety of causes for pneumonia, but was not aware of the immunoglobins effects. For the methotrexate I have bloods taken monthly and I carry a hand held record of those tests, but the immunoglobins are not registered here. I have not seen the consultant since my salmonella, campylobacter etc and not due to see him till December as everything was going well. I did go to see my GP about the vaccines you mention above and from the previous posts and he is investigating. I am certainly worried for the coming winter although I feel relatively well regarding the CLL.
The Center for Disease Control in the US recommends that those who are immune compromised get a second dose of the Pneumonia vaccines in 5 years OR every 5 years. The wording is confusing and I have posted questions about this on several sites without getting an answer from a doctor qualified to answer. Either way they recommend second vaccines 5 years later (how many more times is in question) and now recommend the Pneumovax be given 8 weeks after the Prevenar 13. I'm way out of sync with that as I had not received the Prevenar 13 until this year, but am told that it doesn't matter - to just redo it in 5 years.
I would definitely ask to have your Ig levels tested. Chris calls me the Queen of IVIG - nice to be queen of something. It totally changed my life from one of constant infections to a rare mild infection from time to time caused by allergies. I often can clear these without antibiotics - unheard of in the past.
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