Hydroxy Rare Side Effects

[azaelea]

I note that one of the more rare side effects listed for Hydroxyurea is Dysuria / Renal disorders. I have been on Hydroxy for 4 years and am having recurring U.T.I.’s which are becoming more frequent. I have to have a course of antibiotics each time. I wondered if anyone else has suffered with this when taking Hydroxy. I do have one of the other “rare” side effects listed….toe nails breaking up and of a white powdery appearance. I have ET JAC2+ on 500 mg Hydroxy daily. Your thoughts on this would be appreciated. Regards, Fran

[Pkm52]

I am not advising but have a tale to tell. I taught geriatrics at a University for years. A clinical pearl offered by gynecologists for around and after menopause was the application of a "pea sized" amount of estrogen cream to the urethra. I tucked the information away. I took the information much more seriously after overhearing two Ear Nose and Throat surgeons discussing the merits of using estrogen cream in the nostrils to "plump up" the tissue prior to surgery. Aha! The opening to the bladder (urethra) looses it's fullness - just like our outside skin as we age. It's ability to keep bacteria from moving upwards towards the bladder can be compromised, hence for frequent urinary tract infections in older women. It is a strategy that not all clinicians know about. It is worth bouncing it off your provider. Hydroxyurea certainly has many side effects. The labs we get do screen for unhappy kidneys. So that's the tale. Best of luck.

[azaelea in reply to Pkm52]

thank you very much for your interesting reply. I could mention this to my Practice Nurse at GP’s.

[Winchie in reply to Pkm52]

I agree; works for me.

[Tyray123]

Hi Azaelea

Really sorry to hear about your reoccurring UTI,s I am 71yrs

I have suffered I life time of them and had many courses of antibiotics to the point I am resistant to most

I was put on a maintenance antibiotic one tablet per night,

as I haven’t had a infection for some time my consultant asked me to stop the antibiotic

I have now a personal routine , my dcoctor has prescribed me Hyalo vaginal hydrating gel, which helps to stop bacteria crossing over from the back to the front so to speak

I also take D=Manose twice daily as recommended by my Urologist

He also told me , they are not available on the NHS so I buy them from the health shop

It attracts any bacteria entering the bladder therefore avoids bacteria sticking to the wall of the bladder

I also buy baby wipes and carry them everywhere to fully clean the area after passing stools

For me so far so good

I truly understand how disabling the condition is and having also been diagnosed with ET it’s like a double whammy

I sincerely wish you well and hope my reply to you helps

Thank you for your post and keep well

Ty x

[azaelea in reply to Tyray123]

Thank you so much for this information,Ty. I had a CT scan of abdomen and pelvis four weeks ago as referred by GP to gastroenterologist because of pelvic ache . Still awaiting result and not had any contact with any Consultant so will have to chase this up. The Hyalo and D=Manose look like the way to go. I’ll find out what Scan shows and take it from there. Thank you again. Much appreciated . Fran

[Wilma66]

I also have ET and Jak2 positive. I take Hydrea 500 mg daily. I have been getting nauseas lately. Been on Hydrea for 8 years

[Tyray123]

Hi Fran

I would enjoy any further post you may want to write

Please keep posting your journey, you are not alone

Ty x

[azaelea in reply to Tyray123]

Will do Ty when I get a bit further with test results etc. thanks for the encouragement. Fran x

[Scottishterrier]

Hi azaelea

I know that you do have to drink plenty of water to keep the kidneys function working properly I. Have had no problems with side effects due to hu the only one is the nausea but under control with domperidone for many years but many people react to drugs differently but you should check with your GP if you get no. Joy try and get a. Phone consultation with your consultant or your mpn nurse specialist if you have one

Stay safe

Scottish terrier xx

[azaelea in reply to Scottishterrier]

Thank you for your reply. I do get the occasional nausea but this happens with the UTI. I have a telephone appointment with Haematologist at the end of Oct. and will ask her then. Although it’s at a very large hospital my Haematology Dept is at, we don’t have a designated Nurse we can contact! Regards ,Fran

[Scottishterrier in reply to azaelea]

Was trying up in Scotland that every hospital should have an mpn nurse specialist with help of my local MSP but fell on deaf ears as the health minister was not interested in pursuing the matter

Stay safe

Scottish terrier xx