bev2016
11-27-2016, 08:39 AM
Hello all,
This is my first post here on the Wegener's Talk forum. My mother was diagnosed with Wegener's in mid-August 2016. Until her diagnosis, she was an extremely active, independent 84 year old who still drove her car, kept a beautiful garden, did most of her own cooking, cleaning, grocery shopping, bookkeeping, etc.. However, she had seemed to slow down a bit around April 2016 (perhaps even a bit before). She had long suspected she had some kind of autoimmune disorder, but thought it was something like Sjogren's -- mostly nuisance symptoms of dry eyes, nose, etc… However, in May of this year, she began feeling short of breath and like something was dragging her down. The short of it is that she became ill around the end of July. She went to see her doctor at the regular clinic and they attributed the symptoms to some kind of cardiac problem and prescribed cardiac medications. These did no good. My brother, who shares a house with my mother, called me a little before mid-August (I live in Nova Scotia and he and my mom live in Ottawa, Ontario). My brother felt that there was something odd going on with my mother -- sort of confused. I'd suddenly begun to suspect this too as she always called or emailed daily, and then just sporadically for a few days - with brief emails and didn't seem as talkative as usual. I decided to drive to Ontario and did so around Aug. 9. After arriving at my mother's I could tell there was something odd with her, but she just seemed sleepy and said she wanted to rest and should feel better soon. She put us off with that for about 3 days and then we took her to the ER of the Ottawa General as we became certain that there was something seriously amiss. A cough which she had had for a couple of weeks now produced blood-tinged mucus. At the ER, they soon discovered that her creatinine was wildly high. On comparison with bloodwork done at her local clinic a week before, it had gone sky high in a very short time.
She was diagnosed with Wegener's within a day or so of being admitted to ER -- one of the nephrologists there quickly diagnosed the illness. My mother was kept at the General for 3 weeks -- given 9 PLEX treatments (plasmapheresis) and several kidney dialysis treatments - the intention being to get the lung bleeding stopped and preserve her kidneys as well as possible. She was started on IV steroids and given cyclophosphamide -- then sent home with oral prednisone, cyclophosphamide, and Septra. Unfortunately, the 60 mg. per day dose of prednisone turned out to be disastrous for her. It soon became apparent that it was causing steroid induced psychosis -- some really terrible things that you might expect to read about in an Oliver Sacks book. She also lost her vision -- she had noticed this happening before leaving the hospital and by the time she got home, she had very little central vision. She was held at 60 mg. for about 3 or 4 weeks, then gradually tapered back to around 20 -- at which point, her vision mostly returned. As she has continued to taper off to 10 mg. at 3 months -- she has now regained much of her vision. During a flare in which she had to up the prednisone to around 18 mg., she began losing her vision and the psychosis began to worsen. At 10 mg., the psychosis has been mostly tolerable but it's still pretty frightening for all of us, although she's a trooper and seems to be getting used to all the crazy things she sees and experiences. The main recent catastrophe was a 9 day stay back in hospital after I took her to ER -- she was short of breath and looked terrible. It turned out that she was pancytopenic -- terribly so -- and so she was admitted and put on IV antibiotics and given transfusions. She had to have several during the cyclophosphamide period -- it was stopped entirely about 4 weeks ago. She is now on Imuran for the past week since rallying from the pancytopenia -- but so far, just at 50 mg. per day to start -- hopefully that is not too much. Our pharmacist felt that might be as much as she should have just yet. The doctor wanted to give more, but I did some reading and discovered that for many illnesses, and especially with elderly patients, Imuran should first be prescribed at a low dose and gradually increased. The doctor and I have agreed that if the blood lab work comes back okay for the next while, then she should increase, but I'm watching all of this like a hawk after the episode with the cyclophosphamide (I think my mom was just too small and too elderly to take the amount that was prescribed).
Anyhow, that's where we're at. Basically, she is doing reasonably well. She had to be on O2 for a couple of months, but is now off and walking around the house unassisted. She has a good appetite. She does cough up mucus a few times a day and I don't really know what to think about that -- if that is somewhat normal or if we should be frightened. The only depressing thing in all of this at the moment is that she is still on 3x a week dialysis. At the time when she was diagnosed and the PLEX treatments given, the nephrologist said that he has seen about 50 or so percent of Wegener's patients similar to my mom, recover kidney function -- but he doesn't really begin expecting that until about 3 months of dialysis. I have not seem much said about this, but assume this could be true. After seeing how much the cyclophosphamide beat up my mother, quite frankly, I can't imagine anyone recovering kidney function while on that drug. I can see how different my mom is since going off the cyclophosphamide -- strength returning, etc… However, I know that as treatment goes, she has terminated the cyclophosphamide a bit early and tapered lower on prednisone at a faster rate than most would. But then, she is 84, and maybe her immune system isn't putting up as much resistance.
In any case, we are soldiering on. The dialysis has been stressful for her and for us, but we are trying to keep going with it in hopes that maybe kidney function will return in the next few weeks (we are at about the 3 month point now and no one is saying anything about whether there is hope for that). I guess our biggest challenge has been that my mom has had to have heparin free dialysis and that causes a lot of fibrin clotting which then leads to a lot of flushing and dilution in fluids. I could go on about all of that, but it's more dialysis related than Wegener's.
Okay, that's about all for now. If there are any older Wegener's patients on here, I thought it would be interesting to compare notes on medications -- dosage for older patients. Also, just for anyone who has had really crazy experience with prednisone -- well, we've seen just about every bad thing it can do. I knew plenty about it from a friend's bad experiences, but this has truly been over the top.
take care all,
bev
This is my first post here on the Wegener's Talk forum. My mother was diagnosed with Wegener's in mid-August 2016. Until her diagnosis, she was an extremely active, independent 84 year old who still drove her car, kept a beautiful garden, did most of her own cooking, cleaning, grocery shopping, bookkeeping, etc.. However, she had seemed to slow down a bit around April 2016 (perhaps even a bit before). She had long suspected she had some kind of autoimmune disorder, but thought it was something like Sjogren's -- mostly nuisance symptoms of dry eyes, nose, etc… However, in May of this year, she began feeling short of breath and like something was dragging her down. The short of it is that she became ill around the end of July. She went to see her doctor at the regular clinic and they attributed the symptoms to some kind of cardiac problem and prescribed cardiac medications. These did no good. My brother, who shares a house with my mother, called me a little before mid-August (I live in Nova Scotia and he and my mom live in Ottawa, Ontario). My brother felt that there was something odd going on with my mother -- sort of confused. I'd suddenly begun to suspect this too as she always called or emailed daily, and then just sporadically for a few days - with brief emails and didn't seem as talkative as usual. I decided to drive to Ontario and did so around Aug. 9. After arriving at my mother's I could tell there was something odd with her, but she just seemed sleepy and said she wanted to rest and should feel better soon. She put us off with that for about 3 days and then we took her to the ER of the Ottawa General as we became certain that there was something seriously amiss. A cough which she had had for a couple of weeks now produced blood-tinged mucus. At the ER, they soon discovered that her creatinine was wildly high. On comparison with bloodwork done at her local clinic a week before, it had gone sky high in a very short time.
She was diagnosed with Wegener's within a day or so of being admitted to ER -- one of the nephrologists there quickly diagnosed the illness. My mother was kept at the General for 3 weeks -- given 9 PLEX treatments (plasmapheresis) and several kidney dialysis treatments - the intention being to get the lung bleeding stopped and preserve her kidneys as well as possible. She was started on IV steroids and given cyclophosphamide -- then sent home with oral prednisone, cyclophosphamide, and Septra. Unfortunately, the 60 mg. per day dose of prednisone turned out to be disastrous for her. It soon became apparent that it was causing steroid induced psychosis -- some really terrible things that you might expect to read about in an Oliver Sacks book. She also lost her vision -- she had noticed this happening before leaving the hospital and by the time she got home, she had very little central vision. She was held at 60 mg. for about 3 or 4 weeks, then gradually tapered back to around 20 -- at which point, her vision mostly returned. As she has continued to taper off to 10 mg. at 3 months -- she has now regained much of her vision. During a flare in which she had to up the prednisone to around 18 mg., she began losing her vision and the psychosis began to worsen. At 10 mg., the psychosis has been mostly tolerable but it's still pretty frightening for all of us, although she's a trooper and seems to be getting used to all the crazy things she sees and experiences. The main recent catastrophe was a 9 day stay back in hospital after I took her to ER -- she was short of breath and looked terrible. It turned out that she was pancytopenic -- terribly so -- and so she was admitted and put on IV antibiotics and given transfusions. She had to have several during the cyclophosphamide period -- it was stopped entirely about 4 weeks ago. She is now on Imuran for the past week since rallying from the pancytopenia -- but so far, just at 50 mg. per day to start -- hopefully that is not too much. Our pharmacist felt that might be as much as she should have just yet. The doctor wanted to give more, but I did some reading and discovered that for many illnesses, and especially with elderly patients, Imuran should first be prescribed at a low dose and gradually increased. The doctor and I have agreed that if the blood lab work comes back okay for the next while, then she should increase, but I'm watching all of this like a hawk after the episode with the cyclophosphamide (I think my mom was just too small and too elderly to take the amount that was prescribed).
Anyhow, that's where we're at. Basically, she is doing reasonably well. She had to be on O2 for a couple of months, but is now off and walking around the house unassisted. She has a good appetite. She does cough up mucus a few times a day and I don't really know what to think about that -- if that is somewhat normal or if we should be frightened. The only depressing thing in all of this at the moment is that she is still on 3x a week dialysis. At the time when she was diagnosed and the PLEX treatments given, the nephrologist said that he has seen about 50 or so percent of Wegener's patients similar to my mom, recover kidney function -- but he doesn't really begin expecting that until about 3 months of dialysis. I have not seem much said about this, but assume this could be true. After seeing how much the cyclophosphamide beat up my mother, quite frankly, I can't imagine anyone recovering kidney function while on that drug. I can see how different my mom is since going off the cyclophosphamide -- strength returning, etc… However, I know that as treatment goes, she has terminated the cyclophosphamide a bit early and tapered lower on prednisone at a faster rate than most would. But then, she is 84, and maybe her immune system isn't putting up as much resistance.
In any case, we are soldiering on. The dialysis has been stressful for her and for us, but we are trying to keep going with it in hopes that maybe kidney function will return in the next few weeks (we are at about the 3 month point now and no one is saying anything about whether there is hope for that). I guess our biggest challenge has been that my mom has had to have heparin free dialysis and that causes a lot of fibrin clotting which then leads to a lot of flushing and dilution in fluids. I could go on about all of that, but it's more dialysis related than Wegener's.
Okay, that's about all for now. If there are any older Wegener's patients on here, I thought it would be interesting to compare notes on medications -- dosage for older patients. Also, just for anyone who has had really crazy experience with prednisone -- well, we've seen just about every bad thing it can do. I knew plenty about it from a friend's bad experiences, but this has truly been over the top.
take care all,
bev