Belle

[bellefrank]

My husband had a repeat blood test last week so disappointed to-day when our G.P. said his CKD had dropped again in less than a month from 35 to 27. Also blood count 103 from 120. He thinks the 2 weeks of allopurinol to hopefully prevent gout attacks maybe caused this so no more allopurinol. Our area has only 2 nephrologists with long waiting lists so have private appointment this Friday 28th.August. I asked what a nephrologist could do and was told there is a treatment but only the consultant can prescribe it. His gout is alright at the moment, thank-you for advising the cherry drink from Tesco which he is enjoying every morning. I was feeling so optimistic this morning thinking my husband looked well, so the saying of something like... you cant tell the book by its cover..... Has anyone had help or treatment from a nephrologist ? Thank-you..... Belle.

[Jjlinden]

Hi Belle. I've also taken the advice to eat cherries for my gout but as the season for cherries is closing I have been buying the frozen ones from tesco, with the same effects. Can you tell me which cherry juice you buy as I can't find any in tescos when I look. They are all other fruit with added cherry concentrate which I don't think will have the same effect. I've looked into buying it from Amazon but the pure stuff is so dear. I'm sorry to hear your hubby has had disappointing results, maybe after not taking the gout meds it will improve a little? Mine has had periodic improvements and the GP tells me that they do often 'self heal' . I had a really bad day last Friday, felt like I was wading through treacle after mowing the lawn and doing a bit of housework but feel better this week. Kidneys are strange things!

[bellefrank in reply to Jjlinden]

Thanks Jjlinden, Cherrygood cherry juice from Tesco is £1.50 a carton sometimes £1 on offer. My neighbour brought us Cherry Juice drink from concentrate from Sainsbury. Too early to know if it works. So sorry you had a bad day last Friday maybe done a bit too much. We ladies always like to finish what we start. Friday it poured down here, went to friends in Denbigh and it was dry with some sun all day.. We were both so tired the following day more so my husband but both better on Sunday. As you say kidneys funny things would be so pleased if stopping the allopurinol brings better news. Trying not to get too optimistic about seeing the nephrologist on Friday but deep down hoping for something positive. Will let you know. Thanks again Jjlinden its good to chat. Look after yourself. love Belle

[Jjlinden in reply to bellefrank]

Hi Belle, cherry good in tescos are on offer at 75p at the mo so will try it out! Good luck and fingers crossed for the appointment on Friday.👍. Yes, it is so good to talk with other people in a similar boat, so glad I found this site. All the best, J.

[bellefrank in reply to Jjlinden]

Hi J. Thanks for letting me know will be down at Tesco to-morrow. Also thank-you for your best wishes for Friday. My tum is turning over with the thought and hope the nephrologist is approachable with no gloom and doom. Will let you know. Look after yourself, keep well. Love Belle

[cmcginily]

Hi Belle

I have been under a nephrologist for many years, I also have gout. My Neph prescribed febuxastat tablets, they have not effected my kidneys at all. Since being on the tablets approx 3 years I have had no attacks. My eGFR is running between 31 and 40 at the minute. I have Polycystic Kidney disease. Different to your hubby's CKD but the same in that our kidneys are not doing as they sould do!!

I feel your GP may have been a little premature in stopping the allopurinol research in 2010 actually showed this

We conclude that allopurinol treatment decreases inflammation and slows the progression of renal disease in patients with moderate CKD. In addition, allopurinol reduces cardiovascular and hospitalization risk. These results have to be confirmed in larger prospective trials and are the basis for a hypothesis that still needs to be tested.

It will be interesting to hear what your nephrologist has to say about this.

Remember to take along all your latest blood tests as the consultant will not have access to your GP or NHS notes. Your Gp will write a letter but it is better to be proactive and have as much info with you as possible.

Treatments for CKD are wait and watch until your GFR falls into the teens usually as long as symptoms are not too bad. Once you get to the stage where your kidneys are not functioning enough you have a choice of peritoneal dialysis or haemodialysis.

This will be explained fully as and when you get to that stage.

Hope this info helps on your journey

Best wishes Christine

[bellefrank]

Thank-you Christine, I too wondered if our G.P. had been premature in stopping the allopurinol tablets as my husband had only been taking them for 2 weeks prior to the latest blood test. I dread his gout flaring up again but did read about the febuxastat treatment so as you say will be interesting to hear what the nephrologist has to say. It is very interesting the information you have given regarding the allopurinol especially regarding the cardiovascular disease as he has atrial fibrillation, hence the pacemaker and the apixaban as a blood thinner. I will get all the information about his blood tests so am able to give as much detail as possible. Following the pacemaker his CKD was 56 apparently better than before so shocked that 8 months later it is now 27. Also the anaemia which was slight is now much worse. Hate to admit it but have felt very down since yesterday......must get a grip...... Hope you are keeping well and thank-you once again for your advice. Best wIshes, Belle.

[cmcginily in reply to bellefrank]

Hi Belle, hope the appointment today goes well and some of your questions answered x

Christine