IgA Nephropathy

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IgA Nephropathy

Postby humphrey691 » Sun Mar 17, 2013 10:08 am

Hi, please go easy on me - I'm very new to CKD and to this forum!

Late last year I was diagnosed with IGAN at 35 years old. From what I understand I'm very fortunate as it was diagnosed very early and at the moment I still have very decent kidney function. Since that time I've searched the web for as much info on the condition as possible. Thank goodness I've found this site - real people with real experiences (rather than trying to translate complex medical documents written by doctors, for doctors).

Anyway in terms of medication I'm on the standard stuff - Irbesartan, Prednisolone and MMF. Despite this I'm still having fairly regular flair ups with mouth ulcers, rash down both flanks and some pain around the left kidney. More worryingly though, since around Xmas time, I've been really struggling with joint pain in my fingers, hands wrists, lower back and feet. In addition I'm getting loads of cramps/pins and needles in my hands. Has anybody else with IGAN had similar problems? If so can you offer and suggestions?

TIA

Humphrey
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Re: IgA Nephropathy

Postby cazpi » Sun Mar 17, 2013 3:30 pm

Ulcers and rashes no.

Joint pain and cramp yes. The cramp has been sorted with Bicarb and Quinine. They're looking at the joint pain now. In my case it's hips, knees, and elbows, not really sure if it's kidney related though. I did have iffy feet, but that was plantar fasciitis, and I've fixed that now.

I'm on a completely different cocktail of drugs to you.
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Re: IgA Nephropathy

Postby humphrey691 » Sun Mar 17, 2013 5:10 pm

Thanks for the info. I see the nephrologist on 28th so I'm hoping for some further info then. Do you mind me asking at what stage you are with your kidneys? I'm so new to the disease its a really steep learning curve so I'm trying desperatelyto find out what I can.
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Re: IgA Nephropathy

Postby cazpi » Sun Mar 17, 2013 5:44 pm

Hi Humphrey,
I was diagnosed in 2001 when I was in my mid 30's, with about 40% kidney function remaining at the time.
At it's worst, late 2009, I had egfr of 11%, last week it was 21%, which I'm more than happy with.

There are quite a few of us on here with IgAN
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Re: IgA Nephropathy

Postby Duker5 » Sun Mar 17, 2013 5:53 pm

humphrey691 wrote:Hi, please go easy on me - I'm very new to CKD and to this forum!

Late last year I was diagnosed with IGAN at 35 years old. From what I understand I'm very fortunate as it was diagnosed very early and at the moment I still have very decent kidney function. Since that time I've searched the web for as much info on the condition as possible. Thank goodness I've found this site - real people with real experiences (rather than trying to translate complex medical documents written by doctors, for doctors).

Anyway in terms of medication I'm on the standard stuff - Irbesartan, Prednisolone and MMF. Despite this I'm still having fairly regular flair ups with mouth ulcers, rash down both flanks and some pain around the left kidney. More worryingly though, since around Xmas time, I've been really struggling with joint pain in my fingers, hands wrists, lower back and feet. In addition I'm getting loads of cramps/pins and needles in my hands. Has anybody else with IGAN had similar problems? If so can you offer and suggestions?

TIA

Humphrey


Hi Humphrey,

I was diagnosed in April last year with FSGS (although my paperwork says IgA Nephropathy but immuno-fluorescence negative, whatever that means?) anyway I know FSGS and IgA Nephropathy are quite similar! And am curious as to what your kidney function is now (aka eGFR) mine is currently 27.1% and was 46.3% when I was diagnosed, I ask because in almost a year I haven't been put on anything other than blood presssure meds, where as you are on Prednisone and MMF's <--- not sure what they are??

Regarding joint pain, I have had back pain (seems to be easing up now) and also I've had cramps (more frequent lately) and lots of pins and needles mostly in my feet and hands (if I spend too long on the computer operating the mouse) I can't really offer any constructive advice at the moment, but if you do post anything I can help with I will try my best :)

Duker
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Re: IgA Nephropathy

Postby humphrey691 » Sun Mar 17, 2013 9:20 pm

Hi Duker,

Thanks for taking the time to respond. My eGFR was just over 50 when diagnosed. It hadn't dropped too much when I saw the Nephrologist in Jan. I'll know more accurately when I see him again at the end of the month. However as I mentioned in my previous post, my symptoms are undoubtedly worse with joint pain being especially painful.

MMF is Mycophenolate Mofetil. Perhaps it's worth discussing with your nephrologist? I'll certainly keep you posted on eGFR.

Also thanks to cazpi for your response too. This is exactly why I'm delighted I found this forum - it's reassuring to speak to people who have similar issues. Best wishes.
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Re: IgA Nephropathy

Postby cazpi » Mon Mar 18, 2013 3:22 pm

There is an IgAN group on yahoo as well, but it's (a) quite tricky to wade through, with a funny layout, and (b)very American, a lot of their drugs are differently named, and they use different measurements for some things, and what with the whole private insurance stuff over there, it means that a lot of the posts aren't very relevant to UK users, worth a look though.
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Re: IgA Nephropathy

Postby kelbri » Mon Mar 18, 2013 3:56 pm

Hi,

My husband was diagnosed with IGAN 12 months ago, at the age of 50. We have had some ups and downs over the last 12 months and our last appointment with consultant last Thurs wasn't great. His rate had gone from 22% in January to 16% last week he has been told he needs to lose 2 to 3 stone in order to go on transpalnt list and he is getting the ball rolling for us to see pre dialysis nurse and dietician and possible training regards home dialysis!!!!!
Then again we had a set back just before christmas when he took ill suddenly in central manchester with severe leg cramps in both legs after 15 mins i decided we needed to ring an ambulance as it was so cold and the cramps just werent subsding. his rate went down to 11% and they discussed putting a line in then to start dialysis and said they could turn the results round slightly but they never noramlly return to a previous readin . Well he showed them and his results returned to 23% function which was great for him. We get confused though as each doctor or consultant we see seems to have conflictng ways to go forward one says he needs the dialysis another says different :/
I am worried greatly what the future holds and i am scared regards the home dialysis as i'm petrified of needles so not a good combo lol but i'm sure we will face it together and get through it :)

Anyway it is reassuring to talk to others going through the same experiences rather than just medical staff !!!

Regards Kelly :)
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Re: IgA Nephropathy

Postby humphrey691 » Mon Mar 18, 2013 9:06 pm

cazpi wrote:There is an IgAN group on yahoo as well, but it's (a) quite tricky to wade through, with a funny layout, and (b)very American, a lot of their drugs are differently named, and they use different measurements for some things, and what with the whole private insurance stuff over there, it means that a lot of the posts aren't very relevant to UK users, worth a look though.


Thanks, I've checked the group and completely agree- some decent stuff but personally a bit too confusing for me. I'm only just coming to terms with the illness and as a result I'm on a steep learning curve so I need my info in simple terms!!!

I really appreciate the yahoo info tho - thanks again and best wishes.

Also thanks to Kelbri too. Good luck to your hubby - please keep us posted. Like you I'm very reassured talking to people with real life experience rather than text book terms.
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Re: IgA Nephropathy

Postby dirverd » Mon Mar 18, 2013 10:02 pm

Hi Humphrey,

I'm part of the Igan club too.

Diagnosed in 2000 - dialysis 2012 - transplant from bother six months after this.

In some cases Igan can grumble on for years and not cause kidney failure.

GFR of 60 can be normal, so I'd be surprised if a GFR of 50 is causing your problems.

I have a friend that's on MMF and Pred who had the same achy joints problem (and she's not taking it or Kidney reasons). It might be a side effect of the drugs, although not well known.

Anyway, welcome. There's loads of people on here should be able to help you through this.
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Re: IgA Nephropathy

Postby Tibbs » Wed Mar 20, 2013 8:38 am

Like the others, I wouldn't have thought it was the IgA causing you issues. It's much more likely to be side effects from your drugs, particularly the Prednisolone.

I didn't start to get symptoms from the IgA until I was below 20% function, and even then it was limited to a fuzzy head and fatigue.

I was on MMF prior to my transplant, but not Pred.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
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Re: IgA Nephropathy

Postby Duker5 » Mon Mar 25, 2013 6:48 pm

humphrey691 wrote:Hi Duker,

Thanks for taking the time to respond. My eGFR was just over 50 when diagnosed. It hadn't dropped too much when I saw the Nephrologist in Jan. I'll know more accurately when I see him again at the end of the month. However as I mentioned in my previous post, my symptoms are undoubtedly worse with joint pain being especially painful.

MMF is Mycophenolate Mofetil. Perhaps it's worth discussing with your nephrologist? I'll certainly keep you posted on eGFR.

Also thanks to cazpi for your response too. This is exactly why I'm delighted I found this forum - it's reassuring to speak to people who have similar issues. Best wishes.


Hi humphrey691,

How are you keeping? I have a quick question which has just sprung to mind, did you get put on prednisone, mmf's etc when you were first diagnosed, or did it take sometime before they decided to put you on them? I'm asking because I've been seen for almost a year now and not been given anything but BP meds.

Also how is your gfr now? Mine is (was) 27.1% on the 11th of March.
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Re: IgA Nephropathy

Postby humphrey691 » Tue Mar 26, 2013 1:15 pm

Hi Duker,

I'm still struggling a bit to be honest. Thankfully I see the Nephrologist on Thursday so I'm cautiously optimistic.

I was started on Prednisolone in Oct (shortly after diagnosis) but continued to have 'flare ups' so the Nephrologist opted for MMF from January. I hope this helps... It seems to me there isn't any real clear guidance on the best approach as there are so many variables with the disease. Having said that I feel quite lucky as I have a nephrologist I have faith in who is very open and approachable.

I'm unsure of my eGFR at present but I'm hoping its improved considering the drugs I've been using. I'll certainly keep you posted tho.
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Re: IgA Nephropathy

Postby PaulS » Sun Mar 31, 2013 5:47 pm

Hi Humphrey

Re joint pain I found two things helped. I too have IGAN, GFR 20%, diagnosed 3 years ago but looking back I've had symptoms for a long time. I work long days on my feet (we own a Sandwich Bar in South Devon) and for the last 2 years - until December last year - I had continuous pains roaming around my legs. One week my left knee would hurt, the next week my right foot would ache continuously. All visits to physio, doctor et.c drew a blank.

Although it hurt to walk, we found that a 1 mile stroll every night. although initially painful, did ease the pain considerably by the end of the walk. And keeping that up every day did seem to help a lot over time.

Then late last year I suffered a bout of gout in my knee, as a result of which I now take 300g Allopurinol each day. Since then, all the leg pains have disappeared. I have no idea whether a link to allopurinol is a valid observation, but the timing of the disappearance of the leg / foor pains was interesting.

Hope this helps

Now I just need to sort the leg cramps!

Paul

Paul
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Re: IgA Nephropathy

Postby How123 » Fri May 17, 2013 11:52 pm

Good News,
I was diagnosed with IGAN when I was 30, after having a sore throat. Was quite ill at that time and spent a fair time in hospital. Had a biopsy and numerous tests. Was told I would probably be on dialysis in less than 10 years. Well, I am now 64 and have had a good working life. I feel if this problem is caught early enough, a good Neph. can tweek your kidneys with medication and keep them going much longer. Controlling blood pressure, keeping it as low as practicable, seems to be the main thing. I also take 6 Sodibic caps a day and 6 fish oil caps. My eGFR is now down to 20 , but still hope I will not have to go on dialysis.
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