Belle

Hi there, Christine, Dawn, Jjlinden, cmcginily, Phillen, Warren and you all , such a great help and education to read your comments. Yesterday back to see the nephrologist for blood and scan results. First of all the scan was normal apart from a mark on one kidney which he thinks a mole or cyst but because it was noted he plans to speak to a surgeon friend. Maybe need another ultrasound in a few months. The blood test showed a slight increase from 27 to 28. He had made a graph going back to 2012 showing at times high creatine levels and low kidney function followed by a recovery, then the same thing happening and a recovery again. With the hospital and GP records and my habit of a lifetime keeping a diary we were able to work out the CKD is poor whenever there is infection, i.e. a chest infection, gout, septic elbow, tooth abcess . The nephrologist Dr.D. was confident that dealing with infection or inflammation with anti-biotics quickly could be very helpful. Also Christine you mentioned the allopurinol and as my husbands gout has settled has put him back on 100mg daily, increasing to 200mg and then 300g but only under his supervision. On Wednesday to our G.P. surgery for a whole list of blood tests, 18 in all and the following week Friday 18th September see him again. We had planned a holiday in Europe meeting up with friends which is due to begin 22nd September and I asked if I should cancel. Not at all was his answer just don't overstretch your body as that puts a strain on the kidneys.... However will see him again a few days before we leave, fingers crossed. Thank-you everyone you are such positive, caring folk, do hope you all keep well. Love Belle.

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  • Glad to hear your getting somewhere ask your consultant if your hubby can join patient view where you can see results from the kidney unit yourself that way any that are done in between appointments ie at your gp will be on there & you can check them yourself not all units do it but most of them do! my hubby has only ever been on 200 allopurinol they say 100 is not enough to keep gout at bay but as they damage the kidneys themselves they settled on 200 & that seems to have done the trick! maybe worth asking is 3 too much? i know some people need more than others so maybe thats your hubbys case & yes infections of any kind do affect the kidney function even for people on dialysis my hubby has had infection recently his creatines have been in the 900s up from his "normal" readings of around 600! his advice is good don't give up your hols try to lead as normal a life as possible otherwise you let it take over your life too much! xxx

  • Thanks phillen.... I was pleased that hubby can have the allopurinol and think maybe when we see the neph on Fri 18th he may increase it to 200mg. The dreaded gout is the thing I fear most while away especially as he barely had a 3 week gap between attacks this last time. Will let you know how the appointment goes, we are due to leave Tuesday 22nd September so fingers crossed. I will ask about the.. patient view...thank-you for telling me. Hope you and hubby keep well. Love Belle xx

  • Thanks for the update Belle. Interesting about the correlation between infections and a dip in kidney performance. I had not thought about that before but it makes good sense as the kidneys are the body's filtering system so are required to work harder when we have an infection. I was worried about going on holiday but I did and felt fine and had no problems at all. I am sure that the upcoming holiday in Europe will be uplifting for you and your husband too so I really hope you go. All the best to you both. X Warren

  • Thanks Warren, Have appointment to see GP this Friday and back to the neph. Friday next week. 18th Sept. We leave on Tuesday 22nd and as long as the dreaded gout stays settled sure the rest will be fine. Thanks for keeping in touch, stay well. Love Belle x

  • I hope you both enjoy your holiday in Europe,even more special meeting up with friends.

    Dawn x

  • Thanks Dawn, So far so good.... more blood tests to-morrow, GP on Friday and neph. the following Friday 18th..... Not long after that for hols....Hubby seems well enough its the dreaded gout that knocks him flat, hope the allopurinol does the trick will ask the neph. if he can higher it to 200mg as that seems to work. Can only ask !! Keep well, chat soon. Love Belle xx

  • Hi Belle

    So glad the results are good and hubby back on the allopurinol he certainly does not need another attack of the dreaded gout. Maybe ask if you can take some antibiotics with you to use in an emergency, I usually do. so far have not needed them but just gives you a bit of confidence.

    Hope you have a great holiday and have fun catching up with your friends.

    Love Christine x

  • Hi Christine, Thanks for your good advice will be seeing our GP this Friday, need prescription for allopurinol, sodium bi-carb colchicine and also ask for anti-biotics. I can remember when you could buy anti-biotics over the counter in some places abroad but no more !! See the neph. Friday next week the 18th Sept....The gout is the biggest dread away from home, bad enough at home. Must stay positive I guess. Chat soon, keep well Christine, Love Belle xx

  • Hi Belle

    I am sure the holiday will be great and leave you both feeling relaxed and rested. I well remember buying antibiotics in Spain too lol. Still can in Egypt from the pharmacist. Just remember to take some anti diarrhoea tablets with you too. If you get bad diarrhoea you do not absorb tablets so I always take some loperamide with me. I am like a pharmacy when I go away lol.

    Have a fab holiday

    Love Christine x

  • Thanks Christine, we are due to leave Tuesday 22nd Sept. but feeling a bit down right now, the neph. put hubby back on allopurinol l00mg 6 days later early hours of Friday the dreaded gout again only 2 weeks since last flare-up. Stopped the allopurinol, began colchicine to-gether with loperamide and managed to see our G.P. last night. The gout is worse than ever in one knee, one ankle and both feet. G.P. said to take the colchicine as long as possible with the loperamide so 4 tablets yesterday and so far to-day taken 2. Hubby says its a bit easier now......looks to be in a lot of pain to me. I mentioned our holiday and G.P. keen for us to go as is hubby. He has prescribed all we might need and suggested I text him so he can advise if necessary. I think that will help my confidence. Hubby suggested if necessary can hire a mobility scooter !! We see the neph. again next Friday 18th Sept and e-mail G.P. with his comments or suggestions. He did have some of the blood test results, a mixed bag apparently but at least the GFR has risen a little from 28 to 31. The rest he is leaving for the neph. to discus next Friday. Will be in touch, thank-you again, keep well. Love Belle xx

  • Belle

    Please ask them about Febuxastat for the gout, it was prescribed by my neph and I have not looked back. Colchicine is a nasty drug I really struggled with it the problem being the diarrhoea, you just can not absorb the drugs given, despite loperamide I was terrible, couldn't go out at all.

    I was also given a short course of steroids - prednisolone to calm everything down when I had a particularly nasty attack whilst on the colchicine.

    You GP sounds amazing!

    As for the holiday I am sure it will go well, you seem to have all well covered. It is so hard for partners to watch and not be able to help, I know my husband despairs watching what I go through but your hubby will really appreciate all your support.

    Keep me informed

    Love Christine xx

  • Will ask about the febuxastat on Friday when we see the neph. Hubby is more comfortable but still twinges in both feet. I will also ask the neph about prednisolone also. Will be in touch after the Friday appointment. Thank-you for your support Christine and love and best wishes to everyone in touch. Keep well. Belle xx

  • Hi All. Hope you are all well. Back from seeing the doc on Thursday. Blood test results were 54 which is up from last years 50. He is still very blasé about the whole business. He said ' you have very mild 'disease', indeed a few years ago you wouldn't be considered to have a disease at all but a few years ago they changed the way it's is recorded and now because of this you are below the number they say is normal. I don't think it will get very much worse if at all'! Ok. Even my 'gout' he said wasn't necessarily symptomatic ( bloods were negative but it's not conclusive) and the restless legs also not necessarily from CKD. So I'm to just forget about it and carry on as normal. So that's all right then. I'd better stop looking at the Internet.....!

  • I am not shocked by the blasé attitude of your GP it seems to be quite common. Unfortunately most GP's have little knowledge of ckd and just tend to fob you off.

    Gout and Kidney disease go hand in hand.

    Restless legs are a bit harder to pin down but surely if your kidneys are working at 50% instead of 100% toxins are going to build up and cause problems!!

    I would just push for 6 monthly bloods to keep an eye on things. Stay off the anti-inflammatory drugs, watch your blood pressure, drink plenty of water, 3 litres a day if you can.

    Hope this helps

    Best wishes Christine,

  • Hi Jjlinden. Sorry about your gout and restless legs. My guy is a little better to-day his gout has been dreadful. Went back to the dreaded colchicine, 4 tabs Friday, 3 tabs yesterday Saturday, then began to retch so no more colchicine. However although knee, ankle, feet still swollen not as painful so fingers crossed. ...Maybe for you gfr 54 is just fine in theory but gout and restless legs not pleasant. How about trying Indian tonic for restless legs and cherry juice for gout. Good luck, look after yourself but stay in touch its good to talk. Love Belle xx

  • Hi Christine and Belle. Yes, I think we just have to accept that the way the gp's think is at odds with what we know so we will just have to humour them and know that we know best! 😉 so sorry to hear, Belle that your better half has been suffering with the dreaded gout. The GP offered me the Allopurinol (?) but I'm going to continue with the cherry juice as I think it is working well. And the Fever Tree tonic water also seems to help the restless legs so that was a good suggestion too. My blood preset was low so that s good. I think that now I've stopped taking anti inflammatories and adding salt to meals maybe that has helped my number rise a little and maybe the my low birth weight predisposed me to having this in the first place, I'm hoping that I can continue as I am without making too many changes to my diet. Must up my water intake , I'm not good at remembering to do that! All the best Jj. Xx

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