Antibiotics

[MrsB1963]

Hi just wondering if anyone has any thoughts on taking low dose prophylactic antibiotics for 18 months. recently I have undergone a second cystoscopy which came back normal, I have had 8 uti's and a kidney infection over the last 5 months, the urologist has proceeded to write to my go to advice I take antibiotics for 18 months, he seems to think my recurring infections are due to a weak immune system. I am on w&w recent bloods ok lymph count 14 can anyone tell me what the normal range is ? Appreciate your thoughts.

[Cllcanada Top Poster CURE Hero]

Perhaps time to discuss immunoglobulin G infusions?

~chris

[MrsB1963]

Thankyou for you reply. Just to clarify do you think taking antibiotics for 18 months would not be wise and immunoglobulin G infusion would be the better option?

[AussieNeil Partner Administrator in reply to MrsB1963]

Antibiotics can only protect you from bacterial and fungal infections - and which types will depend on the antibiotics prescribed. IVIG provides protection against a wide range of pathogens, basically every infection that the 1,000 plus donors have successfully overcome, including importantly viral infections.

Neil

[MrsB1963 in reply to AussieNeil]

Thankyou for clarifying, this is very helpful information to me in going forward.

[MsChief in reply to AussieNeil]

Thank you, Neil, that is very comforting!

[flutterbye]

I have been taking prophylactic antibiotics for the last 30 months. I used have bother with UTIs as a child. Cleared up when I had my son but came back just after being diagnosed. I change the low dose antibiotics every 3 months which seems to work.

[Mijoed]

If you have a weakened immune system and are taking prophylactic antibiotics, these will help but only for infections covered by the antibiotic. In my case, i lost my spleen three years ago and thought i was being reasonably well protected by taking the prescribed penicillin. Then a common bacteria, linked to something as common as an ear ache, took up residence in my hip. The penicillin didn't eliminate it so it ran rife, causing septic arthritis, destroying the head of the femur (ball part of the hip joint) in just two months. Currently on a six week coctail of oral and IV antibiotics and total hip replacement scheduled at the end of that.

Once i get past this issue, the haematologists will review the prophylactic antibiotic story and possible infusions.

Mike

[MrsB1963]

Sounds like infusion would be the better option, my consultant is not aware of the recent hospital visits and the decision to put me on antibiotics for 18 months, maybe I need to get in touch with her as the professionals do not seem to be communicating with each other in my case, leaving me feeling confused about what is best treatment.

[splashsplash]

Apparently my IGG levels are fine but I keep getting infections and have to take course after course of antibiotics. These do work but immediately the course finishes the infections return. It is good to know that rotating the antibiotics works and that it's ok to be on them for 30 months, life can get pretty miserable without their back up support.

[Mijoed]

I've learnt from the saga of the last few months to always "review" with each professional any relevant information from other professionals.

Additionally, always be well informed about your illness, planned or possible treatments, and drugs that you should be taking.

Being well informed promotes a far more open informative consultation with the professional.

Mike

[lankisterguy Volunteer]

Ever since the Idelalisib clinical trials for Untreated CLL patients showed a high risk for Pneumocystis a lung fungus that infects immune compromised patients, Dr. Furman has prescribed an anti-fungal/anti-bacterial (Atovaquone daily or Bactrim (TMP/SMX)- 3x per week) along with my daily antiviral Acyclovir.

So if you can't get IVIG as suggested by Chris Cllcanada & AussieNeil then you may want to consider those, after conferring with your Urologist and CLL expert.

Len

[MrsB1963 in reply to lankisterguy]

Thank you for that I will take that on board.

[Cllcanada Top Poster CURE Hero in reply to MrsB1963]

I just finished the 8 Rituxan rounds and Zydelig (idelalisib) on the Furman/Sharman protocol, and I'm still on Acyclovir and Septra antibiotics for PJP...

The Zydelig (idelalisib) continues now as do the prophelactics... some of these side effects are late onset .

~chris