So close for dialysis (update on gilders)

[gilders]

Hi all,
I feel a bit guilty having a bit of a moan so soon after Phil's passing, but I know he'd want us all to still be here for each other.
To recap as VERY briefly as possible -
My latest relapse began approx 2 years ago. It was less aggressive than my usual relapses and the first time that it seems like it was not doing further damage to my kidneys. It was 1 year ago that the Drs finally confirmed it was a relapse (nasal biopsy instead of kidney biopsy this time) and treatment commenced. Treatment was just high dose Imuran and prednisolone which has always worked for me. This time it took 4 months before any improvement. I had a little improvement around end of February this year, but it didn't last long. Since then I've been roughly stable, i.e. I feel bad and don't feel like I'm in remission, but don't feel like WG is become more severe/active.
This is not usual for me. I usually feel worse and worse until treatment begins to work, then feel better and better until a point where I know I'm back in remission.

I'll fast forward past other tests and issues I've had these last few months to my latest Dr appointment and blood results.
My usual Dr is away until next April. The new Dr I saw thinks my WG is in remission, but I think he's relying on my ANCA result too much (it is good at the moment). My nose bleeds are back, I feel pretty terrible, rheumatism is getting worse and this new Dr has had a chest specialist look at my recent lung CT scan and they now believe it isn't pulmonary embolisms (blood clots), but damage (scarring) from WG.
His reasons for my symptoms not being proof of WG activity are - Nose bleeds (because I'm on Warfarin), feeling terrible (due to low blood pressure), worsening rheumatism (due to reduction in Prednisolone - I agree with that, but whats actually causing it?), WG lung damage (if it was active I'd be coughing up blood).
He maybe correct and I hope he is but one final thing occurred 24hs after my appointment and blood tests. He emailed me to tell me that my kidneys have deteriorated considerably. I won't bore you with all the results so will give you the most important/accurate one to do with kidney function. My GFR (filtration rate) is 17. I'm not sure if other countries use the same measurements, but to put it in perspective normal range is 90-120,

Stage 1
≥ 90


Stage 2
60 – 89


Stage 3
30 – 59


Stage 4
15 – 29


Stage 5
< 15



Stage 5 is end stage renal failure where transplant or dialysis is required. As I'm level 17 I'm borderline Stage 5.

The Dr has taken me off Furosemide (diuretic) and to drop my BP tablet (Lisinopril) to just 5mg/day.
He hopes this will take pressure off my kidneys and allow some function to return.
I will be having blood tests on the 27th which will hopefully show some improvement. If no improvement I personally think it is one result too many to ignore the possibility that I'm not in remission.

After Barbara's terrible experience with dialysis I'm a little concerned. I needed dialysis when I first started with WG and although I didn't feel better after it, I didn't find it as bad as what Barbara must have felt (although I was a fairly fit 17 year old back then).

Sorry for the ramble and moan. I know there's no useful information in it for anyone, I just wanted to get it off my chest and what better place?

[Alysia]

I am sorry for the though time you have. Its def sounds like wg activity to me. You can call it 'flaring' or 'smoldering'. Either are dangerous. You need to get serious treatment asap. Rtx for sure. Pred. Maybe also plasma exchange ? Igiv IV ? Those are the more 'heavy guns'. I learned when I was with Phil that plasma exchange can bring miracles when there is kidney involvement. If your doc is not serious enough, look for another one. Geoff has good one. Ask him. Keep on fighting. Love you.

[gilders]

Hi Alysia,
Hope you're coping as well as possible. Funny you should mention Geoff. I'm sure it was him who I contacted to get get his specialist's email (Dr Jayne I think). I didn't end up contacting him, but if my results aren't better on the 27th I'll give it a try.
I'm not sure in the NHS if you can change your Dr, especially if it's not within your home area??

[MikeG-2012]

I am a textbook case that ANCA is NOT the definitive test to show remission. My ANCA has been negative since April 2012, right after diagnosis and first round of treatment. But, last September, I had a nasty flare up. So don't let the docs rely on the ANCA, it is NOT that effective as a marker for remission!!!!

[gilders]

Mike, I also know from first hand experience that ANCA isn't a good marker. The first relapse I had, I picked up on it whilst ANCA was negative. My original Dr agreed with me and started treament again. About 2 weeks into treatment ANCA did then show positive. I've almost always known my body well enough to know if I'm just at the beginning of a relapse, whether things are improving or deteriorating and when I'm in remission. This time I just don't know because I've got so many other illnesses going on at the moment.:confused1:

[mrtmeo]

Hi Gilders,
If there are any rbc casts in the urine, vasculitis is live and active.
Lung activity can be in the form of nodules ((clots) which they can't positively tell the difference unless they surgically go into the lungs) that get bigger and smaller. My mom has always had this activity without coughing up blood.
As far as dialysis, Nocturnal at-home (5-6 nights per week) is the best and provides a quality of life that also, allows a better variety of foods in the diet.

I pray your kidney function comes back and they treat quickly.

[drz]

Sorry to hear about loss of kidney function. But that alone can account for lot of fatigue and feeling crappy. My nephrologist reduced my blood pressure meds last year to try protect my kidneys from further loss of function. She said the latest research indicates a normal blood pressure is best for maintaining kidney function. Before it was going lower than normal guideline limits.

I was also a stage four at my worst but improved to stage three over the years since my initial DX. I hope yours also improves.

[Rose]

Hi Gilders

Although all those symptoms could have been caused by what the doctor thought, I would have thought a WG flare should have been ruled out first especially when all these symptoms have been happening at the same time. I never had any lung symptoms at all when first admitted to hospital before WG diagnosis but a routine x-ray as part of their investigation as to what ails me showed quite a few golf ball sized nodules. This is such a sneaky disease.

Rose

[gilders]

If there are any rbc casts in the urine, vasculitis is live and active.
Lung activity can be in the form of nodules ((clots) which they can't positively tell the difference unless they surgically go into the lungs) that get bigger and smaller. My mom has always had this activity without coughing up blood.
As far as dialysis, Nocturnal at-home (5-6 nights per week) is the best and provides a quality of life that also, allows a better variety of foods in the diet.

I pray your kidney function comes back and they treat quickly.

Hi mrtmeo,
Thanks for the advice.
By rbc I guess that's red blood cells? If so then yes I've had plenty of blood in my urine since my kidneys failed completely in '95. The blood has been present for the last 19 years even when I'm in remission, so I don't personally think it proves "vasculitis is live and active", but like many things, it can be an indicator.
I understand what you're saying about lungs. The CT scan wasn't very clear especially as it couldn't be done with contrast dye (due to poor kidney function). I know I really need a kidney biopsy, but I've not had a good experience with these previously. I've been struggling to get my INR (blood "thiness") level stable after I had to stop taking warfarin after my bone and bone marrow biopsy. Another biopsy would mean going back on daily injections for a few weeks and struggling to get the correct warfarin dose.
It worries me a little that your mum has activity in the lungs without coughing up blood. I'd previously (years ago) coughed up LOTS of blood when WG was very active. I hoped that my Dr was correct with his "no blood - no activity" diagnosis.

I've known for many years that I would eventually be back on dialysis so have researched it a bit. the nighttime one does have it's advantages, although the literature in the UK recommends it to be done EVERY night rather than 5-6 nights per week. There was one thing I read that made me smile - it can be "paused" half way though to allow toilet visits (fair enough) or sex!:love: I can't imagine anything much worse to kill the mood then "hang on a second love, I just need to unplug myself":w00t:

[gilders]

Sorry to hear about loss of kidney function. But that alone can account for lot of fatigue and feeling crappy. My nephrologist reduced my blood pressure meds last year to try protect my kidneys from further loss of function. She said the latest research indicates a normal blood pressure is best for maintaining kidney function. Before it was going lower than normal guideline limits.

I was also a stage four at my worst but improved to stage three over the years since my initial DX. I hope yours also improves.

Thanks for your kind words. It gives me some encouragement that I might still not be "flaring" and that my kidney function my improve. I thought Wegeners was hard enough to control, but kidney function and blood pressure now seems just as confusing. I.e. poor kidney function has given me high blood pressure and that's why I was put on Lisinopril. Now my kidney function has got even worse, my BP has gone the opposite way (high to low) and I now need to cut down on Lisinopril.

[annekat]

Gilders, though you may think you are ranting or moaning, your post is helpful to many of us who haven't had it too bad with Wegs so far, as well as those who have, probably. I have had no kidney involvement and it is a big mystery to me, one that I hope I never have to encounter, but it puts things in perspective to read about others' issues. I'm aware that I could have these problems some day. It's encouraging to see helpful responses from others who know more. I also don't have blood pressure issues, as yet, which would throw another whole complication into things, with the meds for that, etc. As for lungs, I know I have scarring from the initial Wegs damage, but I never did cough up a lot of blood, just small amounts, and I was pretty much assuming everything was OK there, as my breathing function is pretty good. But as Rose says, yes, this is such a sneaky disease, and I'm 62 years old, and I probably can't expect smooth sailing from here on out. I know there are others on the forum my age or a little older who are doing quite well. But we don't know what is ahead. We can only hope that in the next several years there are further advances in treating and controlling what Pete in Ohio calls our "stupid disease". In any case, it is good to hear your update, though I wish it was more positive, especially regarding the kidneys. I wish you could get into a more solid remission as you have in the past. I didn't know you had gotten Wegs so young! I hope you do investigate Dr. Jayne, since I've heard very good things about him, and would hope that since he is such a specialist, you could see him regardless of where you live. I wish you all the best in solving these issues, and do keep us updated!

[me2]

I don't know if I can add anything that might be helpful except to say that many years ago , in the early days of the internet, I was trying to help a fellow weggie in NY who was extremely ill. We became friends and we found that Dr Jayne was part of a team that was on the forefront of treating wg.
I contacted him via email on behalf of my friend and he was very gracious to respond and try and help to us- just some unknown patients on a different continent.
During that time he lost a prominent colleague , Dr Lockwood, in a freak sail boat accident.

In trying to dig up my memories from that time period I found an interesting article that may contain some relevant information. It talks about plasma exchange that Alysia mentioned - Randomized Trial of Plasma Exchange or High-Dosage Methylprednisolone as Adjunctive Therapy for Severe Renal Vasculitis (http://jasn.asnjournals.org/content/18/7/2180.full)

I hope you start to improve soon.

[mrtmeo]

Hi mrtmeo,
Thanks for the advice.
By rbc I guess that's red blood cells? If so then yes I've had plenty of blood in my urine since my kidneys failed completely in '95. The blood has been present for the last 19 years even when I'm in remission, so I don't personally think it proves "vasculitis is live and active", but like many things, it can be an indicator.
I understand what you're saying about lungs. The CT scan wasn't very clear especially as it couldn't be done with contrast dye (due to poor kidney function). I know I really need a kidney biopsy, but I've not had a good experience with these previously. I've been struggling to get my INR (blood "thiness") level stable after I had to stop taking warfarin after my bone and bone marrow biopsy. Another biopsy would mean going back on daily injections for a few weeks and struggling to get the correct warfarin dose.
It worries me a little that your mum has activity in the lungs without coughing up blood. I'd previously (years ago) coughed up LOTS of blood when WG was very active. I hoped that my Dr was correct with his "no blood - no activity" diagnosis.

I've known for many years that I would eventually be back on dialysis so have researched it a bit. the nighttime one does have it's advantages, although the literature in the UK recommends it to be done EVERY night rather than 5-6 nights per week. There was one thing I read that made me smile - it can be "paused" half way though to allow toilet visits (fair enough) or sex!:love: I can't imagine anything much worse to kill the mood then "hang on a second love, I just need to unplug myself":w00t:

Hi gilders,
red blood cell casts in the urine = active vasculitis.
blood in the urine can mean other things, but is the indication to have a further evaluation for casts.
the urine dip sticks can't tell u if there are rbc casts or not, but they can tell u if there is blood.
Have you tried vitamin E as d-alpha tocopherol for blood thinning?
Also, keeping vitamin D levels within the optimum range of 60-80 ng/mL can help in way too many ways especially, with any autoimmune disease or cancer.

[Mas78]

Gliders I am sorry to hear you have been having so many issues. I can relate to your kidney issues, as when I was Dx'd they gave me the dialysis talk and literature. And luckily after on treatment I regained decent function. I also recall my red blood cells in my urine were closely monitored. I hope to read on here soon your kidneys are doing better and dialysis won't be needed!

[JeanMarie]

Gilders, I am worried about you. The Vasculitis Foundation lists Dr David Jayne at Addenbrooke’s Hospital (http://www.cuh.org.uk/addenbrookes/services/clinical/vasculitis/vasculitis_lupus_index.html) as a Medical Consultant. Surely this is the time for a consultation. I've no medical experience at all but I know kidneys can go down hill quickly. Look here for contact info: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[annekat]

Gilders, I am worried about you. The Vasculitis Foundation lists Dr David Jayne at Addenbrooke’s Hospital (http://www.cuh.org.uk/addenbrookes/services/clinical/vasculitis/vasculitis_lupus_index.html) as a Medical Consultant. Surely this is the time for a consultation. I've no medical experience at all but I know kidneys can go down hill quickly. Look here for contact info: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) I agree, this is an excellent resource that could be lifesaving. If for any reason you can't see Dr. Jayne in person, he should be willing to consult with your docs, at least. He sounds like a nice person as well as a great doc.

[Jaha]

Gilders,
I'm wishing you all the best for getting to the bottom of this terrible news of your kidneys. I also didn't know how young you were when you got this ugly disease. I'm sorry that you are going to have to go thru yet another frightening round with your kidneys. All the best to you. We are always here for you, know that my friend.

[Debbie C]

Gilders you know you can "moan " on here anytime...thats what we are here for. I am so sorry to hear you are having such trouble with your kidneys again. Please get in touch with Dr Jayne even if it is just for a consult.Keep us posted.:hug2:

[gilders]

Thanks for all you kind words and concerns.
I'm going to wait and see what shows on the blood tests next Monday. If kidneys have improved after this change in medication, then great, I'll just carry on as is.
If kidneys are still hovering around dialysis levels then I'll see what plan my new Dr has and if I'm not 100% happy I promise you all I'll try make contact with Dr Jayne.

[mrtmeo]

Praying your kidney function improves!

[kaysee]

Gilders,
Hoping your blood tests on Monday show some improvement. When there is kidney involvement there is always a big concern of losing function. I am not looking forward to dialysis one day myself.

Keep hoping for the best and don't worry about ranting.

Karen

[gilders]

Good news!
My blood test results show a good enough improvement of kidney function that dialysis or transplant won't be necessary for the time being.
The change in medication has helped. Fortunately stopping Furosemide hasn't led to any significant swelling. Dropping lisinopril to 5mg has led to my blood pressure increasing and headaches have returned. It's going to be tricky to get the right balance between having a high enough dose of BP meds, but not too high that my renal function deteriorates, but no return to dialysis for now :thumbsup:

[MikeG-2012]

Good news!
My blood test results show a good enough improvement of kidney function that dialysis or transplant won't be necessary for the time being.
The change in medication has helped. Fortunately stopping Furosemide hasn't led to any significant swelling. Dropping lisinopril to 5mg has led to my blood pressure increasing and headaches have returned. It's going to be tricky to get the right balance between having a high enough dose of BP meds, but not too high that my renal function deteriorates, but no return to dialysis for now :thumbsup:

Great news Gilders!!!!

[Mas78]

Glad to hear things are turning in your favor! Hopefully you'll get the new doses sorted out soon and feeling great again.

[drz]

Good news!
My blood test results show a good enough improvement of kidney function that dialysis or transplant won't be necessary for the time being.
The change in medication has helped. Fortunately stopping Furosemide hasn't led to any significant swelling. Dropping lisinopril to 5mg has led to my blood pressure increasing and headaches have returned. It's going to be tricky to get the right balance between having a high enough dose of BP meds, but not too high that my renal function deteriorates, but no return to dialysis for now :thumbsup:

What level of BP are your doctors recommending? My nephrologist recently told me they now want optimal BP to protect the kidneys at about normal of 120/80. Before they told me to keep it low as possible around 100/70 or less if you can tolerate it with no dizziness or faintness. So my BP meds were decreased to increase my BP some.

[mrtmeo]

Good news!
My blood test results show a good enough improvement of kidney function that dialysis or transplant won't be necessary for the time being.
The change in medication has helped. Fortunately stopping Furosemide hasn't led to any significant swelling. Dropping lisinopril to 5mg has led to my blood pressure increasing and headaches have returned. It's going to be tricky to get the right balance between having a high enough dose of BP meds, but not too high that my renal function deteriorates, but no return to dialysis for now :thumbsup:

Hi Gilders,
Awesome news!
Do u know what your creatinine is at?
What meds are you on?

[annekat]

Wonderful news! I hope this improvement continues, and that you find a way to get rid of the headaches at the same time.

[gilders]

Drz, I'm having to aim for as close to "ideal" pressure as possible as I do suffer from dizzyness and light headedness when pressure is on the low side and severe headaches when it's on the high side, but I was thinking that 110/70 was the "ideal" pressure.

Mrtmeo, creatinine has dropped to 243 umol/L (2.75mg/dL). Current meds are Azathioprine (Imuran), Prednisolone, Lisinopril, Folic acid, alfacalcidol, calcichew D3, Omeprazole, Warfarin, plus nasal spray and rinses, eye drops, pain killers.

[kaysee]

gilders,
So glad to hear your good news. Hope you can get your BP where it needs to be and stay away from the dialysis. Best of luck with getting the meds at the right dosage.

Karen

[drz]

Drz, I'm having to aim for as close to "ideal" pressure as possible as I do suffer from dizzyness and light headedness when pressure is on the low side and severe headaches when it's on the high side, but I was thinking that 110/70 was the "ideal" pressure.

Mrtmeo, creatinine has dropped to 243 umol/L (2.75mg/dL). Current meds are Azathioprine (Imuran), Prednisolone, Lisinopril, Folic acid, alfacalcidol, calcichew D3, Omeprazole, Warfarin, plus nasal spray and rinses, eye drops, pain killers.

My current target is 110/70 cause I wasn't sure about new info and advice but my nephrologist said BP too low is as hard on kidneys as too high. I think they regard too high as over 140/90 and anything less as OK as long as it above 90/60. but the ideal is the 110-120/70-80 range when sitting at rest.

[mrtmeo]

Mrtmeo, creatinine has dropped to 243 umol/L (2.75mg/dL). Current meds are Azathioprine (Imuran), Prednisolone, Lisinopril, Folic acid, alfacalcidol, calcichew D3, Omeprazole, Warfarin, plus nasal spray and rinses, eye drops, pain killers.

I sure hope it improves further on the Imuran!

[Jaha]

Gilders,
That is truly some good news, wishing you all the best for more improvement. This is a win, congratulations!:thumbsup:

[Debbie C]

Gilders, I am as happy as everyone too hear the good results.:hug3:. I recently saw an ad on t.v. and also googled it,that there is a class action law suit against the makers of lispineral ( sp ? ) your b.p. med. I don't know what it is about but you should check into it and maybe they can put you on something totally different. Good luck and I hope the improvement keeps up .

[Wegetarian]

Super glad to hear that things look better. Nice that you could cut down on your meds too without any significant ill effects. Dunno about others, but I always enjoy it when I can pop a few pills less.

[Debbie C]

Gilders,I googled Lisinopril again and there is a lawsuit against the company because it can cause liver damage and failure.

[drz]

Gilders,I googled Lisinopril again and there is a lawsuit against the company because it can cause liver damage and failure.

This is scary since many of the other drugs like Azathioprine and statins to reduce cholesterol can do same thing but our doctors think we need them all.

[Debbie C]

Drz,my pcp has been trying to put me on Lipitor for years with my cholesterol but my cardio said no and did a scan and I have NO plaque build up and everything was good. So he wrote a letter to my pcp telling him I don't need it. I heard from so many drs. that statins may lower your cholesterol but they are no good for you in the long run, just like all this other crap we take, they are good for one thing but destroy something else.But what are we to do....Damned if we do and Damned if we don't !

[mrtmeo]

Drz,my pcp has been trying to put me on Lipitor for years with my cholesterol but my cardio said no and did a scan and I have NO plaque build up and everything was good. So he wrote a letter to my pcp telling him I don't need it. I heard from so many drs. that statins may lower your cholesterol but they are no good for you in the long run, just like all this other crap we take, they are good for one thing but destroy something else.But what are we to do....Damned if we do and Damned if we don't !

statins do not correct the problem.
The liver makes cholesterol in response to inflammation.
The majority of plaque is made up of calcium and very little cholesterol.
Stop the inflammation and the cholesterol goes down.
Cholesterol is actually a part of immune system and most of our hormones including vitamin D need cholesterol.

[Debbie C]

statins do not correct the problem.
The liver makes cholesterol in response to inflammation.


Then I must be really inflammed,because my cholesterol HIGH

[gilders]

Gilders,I googled Lisinopril again and there is a lawsuit against the company because it can cause liver damage and failure.
Thanks for the info.
My Liver is quite closely kept an eye on as I also have Haemochromatosis (there's not much I don't have). Fortunately my haemochromatosis is under control and was diagnosed quite early. My liver is in pretty good shape. I did a lot of drinking from 16 to about 28, then began to drink sensibly. Therefore the very slight fibrosis of the liver isn't likely to be due to Lisinopril as I've been on it for 19 years except for a couple of months this last year.
Funny that drz should also mention statins and azathioprine as I've been on both of these for most of the last 19 years.

Wegetarian, my aim is always to be as drug free as possible, especially prednisolne. You start with one drug, take another to combat the side effects of the first drug, then a third for the side effects of the second drug......you get the picture:wink1:

[mrtmeo]

Hi gilders,
Do you have a swollen abdomen?
My mom has had a swollen abdomen ever since starting ctx and rtx and it never goes away.

[kmac14]

I have had two kidney Tx's and with the first one, function slowly declined over three years. Everyone is different but it is possible to stay for a long time with a GFR which is quite low. E.g 15 - even 12. These days they are keen to leave dialysis as long as possible. I always had blood in urine due to the damage caused by wegeners. I think that the damage left behind itself causes issues even when the wg is in remission so e.g. Blood in urine is not immediately because of active wegeners. BP was a problem for me when I was in decline. Furosemide to remove excess fluid lower bp but furosemide harsh on kidneys. High bp also harsh on kidneys and kidney failure causes high BP. It is a balance but important to keep BP as under control as poss.

[mrtmeo]

I have had two kidney Tx's and with the first one, function slowly declined over three years. Everyone is different but it is possible to stay for a long time with a GFR which is quite low. E.g 15 - even 12. These days they are keen to leave dialysis as long as possible. I always had blood in urine due to the damage caused by wegeners. I think that the damage left behind itself causes issues even when the wg is in remission so e.g. Blood in urine is not immediately because of active wegeners. BP was a problem for me when I was in decline. Furosemide to remove excess fluid lower bp but furosemide harsh on kidneys. High bp also harsh on kidneys and kidney failure causes high BP. It is a balance but important to keep BP as under control as poss.

My mom had high bp only from prednisone when she was on it last year with normal kidney function.
Now, with a creatinine of 2.2, she has lower bp and not on a bp med, but she is still on about 7mg prednisone and mofetil 1gm.
Just blood in the urine doesn't mean active weg's, but it is an indicator to get a urinalysis to determine if there is red blood cell casts which means active weg's.

I am so sorry that your kidney function declined.
What treatments did you have?

[kmac14]

I had a second tx around 2 years ago which is doing great so all really good at the moment. During decline I did have difficulties with managing BP and oedema. Decline was not due to active wegeners but just that nearly 14 years had been the lifespan of the previous transplant. A good length of time really.

[mrtmeo]

I had a second tx around 2 years ago which is doing great so all really good at the moment. During decline I did have difficulties with managing BP and oedema. Decline was not due to active wegeners but just that nearly 14 years had been the lifespan of the previous transplant. A good length of time really.

That is a good long time on one kidney.
There is research working with using the bone marrow from the donor for kidney transplants without the need of an immunosuppressants.
Here is a study still recruiting
http://www.clinicaltrials.gov/show/NCT01758042

Combining Bone Marrow and Organ Transplants Shows Promise - New York Presbyterian Hospital
(http://nyp.org/news/hospital/bone-marrow-solid-organ-transplant.html)

[mrtmeo]

Hi Gilders,
Just wondering how things are going?
Hope all is well.

[gilders]

HI mrtmeo
I guess you noticed I've been very quiet on the forum for the last week. It has been due to illness but I don't think it's Wegeners or kidney related.
My wife and I visited Blackpool (British seaside resort) last Thursday and Friday. This was a spur of the moment thing partly to celebrate the good news that I don't need dialysis yet. I did more walking than usual, but felt fine back home on Saturday, just a little more tired than usual.
Sunday was an awful day. Severe nausea, stomach pain, headaches, the whole of my body in pain. During the night I had the chills, but think my body heat must have been high as I started to hallucinate.
I was in less pain Monday and didn't have the fever or chills, but still could not stomach food. It's now Friday and I'm still struggling to eat, still have diarrhoea and still feel a little weaker than usual.
I'm not sure if it's food poisoning, norovirus or some other bug.
I probably should see my GP, but I'm a bit stubborn and if I'm not getting worse I don't tend to seek medical help.

I'd lost 8 pounds from Sunday to Tuesday. I guess I've lost more since. I need to lose weight so at least something good is coming from all this, but it's not the best way of doing it.

[mrtmeo]

HI mrtmeo
I guess you noticed I've been very quiet on the forum for the last week. It has been due to illness but I don't think it's Wegeners or kidney related.
My wife and I visited Blackpool (British seaside resort) last Thursday and Friday. This was a spur of the moment thing partly to celebrate the good news that I don't need dialysis yet. I did more walking than usual, but felt fine back home on Saturday, just a little more tired than usual.
Sunday was an awful day. Severe nausea, stomach pain, headaches, the whole of my body in pain. During the night I had the chills, but think my body heat must have been high as I started to hallucinate.
I was in less pain Monday and didn't have the fever or chills, but still could not stomach food. It's now Friday and I'm still struggling to eat, still have diarrhoea and still feel a little weaker than usual.
I'm not sure if it's food poisoning, norovirus or some other bug.
I probably should see my GP, but I'm a bit stubborn and if I'm not getting worse I don't tend to seek medical help.

I'd lost 8 pounds from Sunday to Tuesday. I guess I've lost more since. I need to lose weight so at least something good is coming from all this, but it's not the best way of doing it.

Oh Gilders,

That's terrible!
8 pounds is alot of weight to lose so quickly.
Try some protein shakes and good quality fats if they feel okay on your stomach.

It doesn't sound like food poisoning because that only lasts for about 24 hrs.
It sounds like someone left you the latest stomach flu going around.
It could have been in your food from a sick preparer.
It is so sad when we can't even go out and enjoy ourselves.
I'm so sorry you had to go thru this.

Most of these sicknesses start because when people get vaccinated, like the flu shot, they become a carrier for 2 weeks.
Being immune suppressed makes it even more difficult.

My mom got a virus when she went for a colonoscopy (got from the scope).
She had projectile vomiting for 5 days and watery diarrhea for 3 days but she wasn't on any immune suppressants, yet.
I think she had either the roto or nora virus.
I had to bring her to the ER for IV fluids 2 times.

She is immune suppressed now, and caught a stomach flu, maybe noro, but I have her vitamin D levels up and it only lasted 6 hrs with vomiting and diarrhea which she got from her grandaughter who had it for over a week.
I didn't get it even tho I'm taking care of my mom because my D levels are up and I am not immune suppressed.

I sure hope and pray that yours is going away.

[Debbie C]

Gilders,sorry to hear you became ill while celebrating but that does not sound good. You diffenently should go to your dr. and get checked and maybe have more blood work done. Even like mrtmeo said ,maybe go to the e.r and get some fluids into you before you become dehydrated. Keep us updated

[Jaha]

Gilders,
Sorry that you had to get so sick, while having a good news celebration. That is a very large amount of weight to lose in that time period. Please watch yourself closely and don't let things get out of control. You just got some great news, so please take care of yourself. Hope you feel better soon.

[gilders]

Thanks for the concerns about my illness, which I'm 99% is norovirus as it's quite common at the moment. I'm not really THAT unwell. Stomach/flu virus is nothing compared to what most of us have to go through often with this (Wegener's) illness.
I'm sure it would have been over and done with within a couple of days, but being immunosuppressed drags things on.

[JeanMarie]

I'm going to stick my nose in here. See your doctor. With damaged kidneys you can easily dehydrate & end up with more damage.

[gilders]

Jean, thank you. I've made sure throughout that I've sipped plenty of water, even when I couldn't face food.
Yesterday and today I've managed to eat a little more, so I must be turning the corner now. I've been immunosuppressed for about 16 of the last 19 years, so I'm kind of used to illnesses sticking in my system longer than the average person. I try to avoid the Dr's as much as possible so that when I do visit them they take me seriously, rather than them thinking "here he is again with a minor illness".

[Wegetarian]

Glad to hear you are feeling a bit better. Promise us you'll at least see a doc if it gets any worse :)

[kmac14]

Hi Gilders, hope things are OK today with you and that Norovirus has shifted. I am a UK Wegeners and I noticed that they did mention. Dr. Jayne earlier in this thread. He is the uk and really a world specialist in wegeners and vasculitis. He is at Addenbrookes so don't know if your trust would let you go down there but do ask about him because he is the top fella. Very nice guy and says it like it is. It doesn't matter if you annoy the docs. I was like that - not bother them again. Well bother them because you are not run of the mill patient and you know your body. I got a norovirus incident and then my magnesium declined so badly that I could not shift it. I ended up a month later dehydrated v bad and that damaged my kidney. GPs would not listen and would not listen and that led to a decline. If you get no luck with the gps then go direct to your unit and see them. Don't hang about for even more than a week. It is a big deal not to get dehydrated and not to just leave it to hopefully lift on its own.

Also I think that a protein heavy diet of red meat and such like is hefty on the kidneys so perhaps check out what kind of a diet is best for prolonging the kidneys and keeping damage to a minimum. I'd say not protein rich. Lots of fluids and no holding it in. When you need to go, GO! Also, the renal patients support group on FB is vg and loads of great advice. Support for all levels of renal issues.