Can some one advice

[Deniz2012]

I have CLL and been on W&W For 15 years my dr isn’t worried at all as my bloods are only progressing very slowly ie like doubled in the time since I was first diagnosed. I also have lupus , and been on high blood pressure meds for 41 years but I get a lot of urinary infections I had been on ten courses of antibiotics in the last year and no one knows why this keeps happening, so I would be great full for any advice 😊thank you all.

[lankisterguy Volunteer]

Hi Deniz2012,-

UTIs are common among we CLL patients, including males. Our immune systems are all compromised, but rarely in the same way.

See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

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Many CLL patients need montly infusions of IVIG

webmd.com/a-to-z-guides/imm...

en.wikipedia.org/wiki/Immun...

to bolster their immunity to keep the UTIs from becoming much more serious.

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Here is a link to the 62 previous times UTIs were discussed in postings here:

healthunlocked.com/cllsuppo...

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Len

[Deniz2012 in reply to lankisterguy]

Thank you so much don’t understand why it was never picked up by my Haematologist I will check out the links 😍

[lankisterguy Volunteer in reply to Deniz2012]

Hi Deniz2020, -

Some of our UK folks are commenting that the NHS is very inconsistent from location to location and even here in the USA, some of our hematologists have tunnel vision, choosing to ignore anything that doesn't show up in a CBC+diff.

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So we find that the patients need to advocate for themselves and push the doctors to respond to recurring problems.

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From what I read about NHS, the haematologist might refer you back to your GP to deal with the recurring UTIs, and you might need to then prompt the discussion of IVIG.

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I hope that PaulaS Newdawn Jm954 or JigFettler may weigh in with suggestions for you.

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Len

[Deniz2012 in reply to lankisterguy]

Thanks Len much appreciated xx

[Jm954 Administrator]

Deniz, you need a referral to a urologist who can rule out most of the reasons for UTIs. That should probably be done by your GP.It would also be sensible to get your immunoglobulin levels checked too as yours might be very low and need infusions to correct which is a common issue with CLL.

Jackie

[Deniz2012 in reply to Jm954]

Thank you so much I will mention it to my haematologists next time I see her xx

[PaulaS Volunteer]

Hi Deniz,

Len and Jackie have given some great advice and I'm glad you're going to follow up on that. Meanwhile, for some simple practical ways of reducing the chances of getting urine infections, you might like to check this post and the many replies to it that give other suggestions.

healthunlocked.com/cllsuppo...

Wishing you well,

Paula

[Deniz2012 in reply to PaulaS]

Thanks Paula I will check the post now so great full to you all xx