Belle

[bellefrank]

Hi Christine, Jjlinden and everyone whose help has meant so much. Early hours of Thursday my husband was in agony with gout. He took the dreaded colchicine 4 tablets on Thursday and 2 on Friday. At least he was able to walk into the hospital later Friday to see the nephrologist...... What can I say.... we were both so impressed as he had all records, blood tests and information from the last 20 years and had studied them all so there was nothing we needed to tell him. His advice....colchicine is the best treatment for a gout attack so take them for a day or two but stop as soon as they affect the bowel. Apparently he has had CKD for years and the kidney function has gone up and down in a pyramid fashion never a straight line down and down. He is confident that his kidneys are not holding on to liquid so the answer is to keep his kidneys hydrated and the gout will go also. Drinking lots and lots of water is not the answer so prescribed sodium bicarbonate capsules 500 mg each capsule and to take 2 of them 3 times a day. It sounded strange to me as my husband is on a low salt diet. Upon examination he was delighted there was no swelling, muscles well toned and blood pressure better than his own. From there he had a kidney and bladder ultrasound and everything appeared normal. We were with the nephrologist for over one hour, not concerned about the anaemia as it is reversible without treatment apart from hydration. He wants to see us again next Friday when he will have a plan drawn up for review over the next 6 months. It was music to my ears when he said........ I am confident you have nothing to worry about, you are in fine shape we will resolve this cycle and have you on a much more even level.............. This morning at 8am my husband came into our bedroom carrying a mug of tea with the words. Morning sweetheart..... I barely have a twinge...... What a difference a day makes......that was a song I think ? Chat soon. Love to you all xx xx

[phillen]

Thats good news I am pleased to hear my hubby was also on sodium bicarb capsules its different to salt as at one point he also had salt tablets!

he doesn't have any now on dialysis as i suppose the dialysis contains stuff

you sound like you have an excellent neph who will hopefully work out a plan to keep the gout at bay & hopefully keep him well x

[bellefrank in reply to phillen]

Hi phillen. Did not know your hubby is on dialysis, how is he coping ? I guess there is no need now for the bi-carb. Does he need a special diet ? Saw a programme on TV and the patients on dialysis said something about being thirsty all the time. It must be very difficult for families as well as the patient. I presume he does not suffer from gout, certainly hope not life is difficult enough for you both. Very best wishes and love Belle xx

[phillen in reply to bellefrank]

Yes nearly 5 years now! he takes allopurinol to stop the gout his last attack was about 20 years ago now! so he's taken that all this time! the bicarb is a funny thing he had quite a high dose before! but now on dialysis he has to avoid scones even as they are high in bicarb!

It is very difficult for the wife or partner as you feel helpless & he went from stage 3 through to dialysis within a year which was scarey for us both we realized we knew nothing thats why i joined this discussion group as there seems not much advice just the 10 mins with the neph! in the earlier stages! i see so many people telling others to follow low pottassium & phosphate diets at stage 3 when it is totally unnecessary! you can do more harm than good unless you have been told to! my hubby only has problems with high phophates his friend who he met through dialysis only has problems with pottassium! proving that everyone is different!

He did find the fluid control a problem mainly in the summer when the weather is hot he's only allowed 1 litre daily! but in earlier stages you are told to drink more! I could go on but if theres ever anything i can advice on i will!

Take care keep us informed of how things are going x

[bellefrank in reply to phillen]

Hi Phillen, Thank-you for your explanation and advice. You poor loves... to go through to dialysis in such a short time is so bad. As you say to go onto a low salt diet etc is exactly what I did when told CKD had gone down yet again to 35... A month later 27...that told me I had made a mistake somewhere. Sadly in our area we have 2 nephrologists and a 16 week waiting list. Decided to go private and saw the recommended one 5 days later. We had over an hour with him last Friday. He said he did not want us to run up a bill of thousands of £ s but would not compromise on my husbands health. Fortunately he had all his medical records from over the last 20 years and had studied them all carefully. He then arranged a kidney and bladder scan within the hour and this morning went back for a blood and urine test. Will see him for the results this Friday and by then he said he would supply us with a plan to maintain health. However the non-urgent blood tests could be done at our G.P. surgery under the N.H.S. We feel that sadly money talks, which is really wrong but unable to bear the long wait. Our G.P. said to discontinue with the allopurinol in case it was causing more kidney damage that was on the Monday and by the early hours of Thursday another dreadful gout attack. The neph. also said to leave off the allopurinol for the time being, take the colchicine for 1 and a half days i.e. 6 tablets or until they affected the bowel. Fortunately the gout has receded to a slight twinge before the side effects kicked in. We wait and see and hope that our visit this Friday proves to be as positive as the week before. Thank-you once again, will be in touch after Friday. We send all our best wishes to you both. Love Belle x

[Jjlinden]

What marvellous news, I'm very pleased you had such a good experience, there is hope for us all! . I will have to consider doing the same thing when the time comes. I'm sure it makes a big difference to the way you are treated although it shouldn't! Are the sodium bicarbonate capsules only available on prescription or can they be bought over the counter? They sound like something you use in baking, I put bicarbonate of soda in my chocolate cake..... Xx

[bellefrank in reply to Jjlinden]

Hi jJ Thank-you..... Yes the neph. a really nice gentleman, we were treated with dignity and respect, so important. You are quite right I too put bicarb. in baking. We were given a private prescription for a 28 days supply which cost just over £10. Read the leaflet in the first box and yes it says can be bought over the counter. So far so good. Hubby goes for a blood test on Tuesday morning so the Neph. has all the results, blood test and scan and will be able to give us the plan he said he would work out when we see him again next Friday. Stay well, chat soon. Love Belle xx

[cmcginily]

Hi Belle I am so happy for you and hubby. Sounds so much more positive. I take bicarb too.

Love Christine

[bellefrank in reply to cmcginily]

Hi Christine, Thank-you so much. You take bi-carb also, I must have looked at the Neph. with a blank expression..... just surprise I expect. A very nice approachable man who cheered me up. Hubby has blood test on Tuesday so next Friday when he receives the result plus the scan report will have a plan worked out to hopefully keep him well and gout free.... please.... !! Will let you know how our next visit goes, so thanks again and keep well.

To-day he spent 2 hours in the garden with my help weeding, cutting back shrubs and filling the brown bin.......a bit of confidence helps a lot.

Love Belle