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Thread: Older Wegener's patients

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    Default Older Wegener's patients

    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

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    Welcome to the forum, Bev, and I'm truly sorry for your reason to be here. What a lot your mom has been through in a relatively short time, especially considering her age. She is at least lucky to have been diagnosed fairly soon after symptoms appeared, especially given the kidney involvement. I have not had kidney involvement so far, but there are others on here who can give insights into that. I can comment that prednisone does not cause those wild effects in everyone, but it does for some, and am sorry it did for her, and the vision loss must have been frightening. At least, because of the problems, she was not on a high dose long compared to some, so may avoid some of the long term effects such as adrenal deficiency and bone loss. As for cyclophosphamide, it was not so hard on me, and did the job nicely, but some cannot tolerate it. Everyone is different. And age could certainly be a factor. I'm out of time to write but am sure others will respond!
    Anne, dx'ed April 2011

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    Sorry you've gotten no more responses yet...hang in there, as there are many of middle age or older with the disease. I am 64, pretty typical, though younger people do get it. You might try some searches on older patients or mom's with Wegener's, or whatever issues you want to know more about. Best of luck, maybe people are returning from holiday trips. Hang in there, and best wishes to your mom.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Bev, I'm so sorry for all that you and your mom have been through. I participate in the forum due to my daughter having WG, but it turned out that a good friend of mine cares for her mother-in-law with WG who I believe was diagnosed in her mid seventies. They live in Australia. I think things have gone pretty well for her after diagnosis; they just make sure to stay on top of things. Best wishes.

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    Hi Bev. I was diagnosed in 2008 at the age of 58. My kidneys were failing rapidly and the Cyclphophomide and the Solumedrol Infusions stopped that in its tracks. My GFR before treatment was 37. Now it is around 60 and has remained this for the past 3 years on maintenance therapy of Cellcept 750mgs x twice daily and 2.5mgs of Prednisone

    Following the Cyclophosphamide and the Solumedrol infusions I was started on 60mgs of pred daily. This was reduced fairly quickly over the next 6 months or so. It was when I reached 10mgs that I found hard to reduce further without the emergence of some symptoms. I persevered and have been on this low dose since 2013. Today feel as if I could stop the pred altogether but my doctor seems to think that staying on even such a low dose can prevent flares. I had a few minor ones in the first few years controlled by just raising the pred temporarily but also had a major one starting in November 2014 which required IV solumedrol again but at a lower dose. That stopped the flare and I have been fine as far as the Wegeners is concerned, since.

    As far as the side effects are concerned I have had the usual ones you can expect from Pred. I never suffered visual problems or psychosis...that must have been very upsetting for you to see your mother like this I was OK with the cyclophosphamide. I was though at one point hospitalized for drug induced hepatitis during my monthly infusions in June 2008. Everyone seems to think it was caused by the drug they had given me to prevent Tuberculosis. My doctor at the time thought it would be wise to be on this drug as going around South Africa with a depleted immune system where TB is rife was not a good idea. Other doctors since have thought this was not required but alas. Anyway, that must have been the cause of the hepatitis as I restarted treatment when my liver enzymes lowered and all was fine

    I dont know if the age of the patient would have an influence on the dosage of the medication. I see that my doctor after monitoring my condition would only adjust my medication if I was not responding adequately to treatment, if my labs were showing abnormalities or if I was complaining of some intolerable side effect. He has though mentioned that I am on an fairly small dose of Cellcept. I started 1.5G Cellcept daily and responded well to that and so it has never been changed. What I have read is that 2G per day is the standard dose. Whether I was started on that lower dose because of my age I dont know though I was under the impression that if this did not adequately control the disease the dosage would be increased.

    Hope this helps. All the best to your mum.

    Rose

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    Bev, glad to see some responses. You should find some posts about really bad pred experiences in the archives, also your doc probably knows one should be tested for a certain enzyme before taking imuran. It sounds like things are going OK and you and your mom are handling them well, maybe even caught the kidney issues soon enough to recover that function. I've just been thinking about your description of your mom and her active lifestyle including a beautiful garden. We hope to hear she is doing well soon and resuming those activities.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default thanks everyone -- a few questions for everyone

    [QUOTE=annekat;109656]Bev, glad to see some responses. You should find some posts about really bad pred experiences in the archives, also your doc probably knows one should be tested for a certain enzyme before taking imuran. It sounds like things are going OK and you and your mom are handling them well, maybe even caught the kidney issues soon enough to recover that function. I've just been thinking about your description of your mom and her active lifestyle including a beautiful garden. We hope to hear she is doing well soon and resuming those activities.

    First - Thanks to everyone who responded to my first post. I wanted to reply sooner, but as a caregiver, I've been pretty stressed out and have not had much time to be online.

    Your responses have left me with a few questions and thoughts to ponder. These are a few.

    First, I don't think the doctor did the enzyme test (TPMT?) on my mom before putting her on Imuran. I'm going to ask tomorrow because since posting, I started having second thoughts about the Imuran. over the weekend, mom seemed to be looking jaundiced and she had a couple of days of bad diarrhea. She also seemed confused and had a really bad time at dialysis on Saturday. We will be seeing her doctor tomorrow -- but my brother and I decided that we would not give her any more Imuran after the bad diarrhea on Saturday. I guess my concern is that she is elderly and also a petite person. The Imuran lit that I studied said that the geriatric dose should be 50 mg. but her doctor wanted to start at 100 mg. We settled on 75 mg. but not I'm thinking that is probably too much, or that she won't be able to tolerate the Imuran at all. After going through the recent scary pancytopenia as a result of cyclophosphamide, I'm not too thrilled by the thought that the Imuran may cause the same thing.

    My other thought on all of this is that I wonder how quickly people have to move on to a maintenance drug after ending the initial cyclophosphamide-prednisone treatment. Three weeks ago, when she was hospitalized with pancytopenia, a couple of the nephrology team doctors mentioned that she would probably be going on Imuran, but at that time, they said that there was probably no great rush to start it as he immune system was already so beaten up from the cyclophosphamide. It is a different doctor that has started her on the Imuran -- that doctor not seeming to want to get going with something immediately. My gut feeling is that my mom could probably use a bit more recovery time before starting a new immune suppressant drug. JMHO of course.

    I guess that leads me to my final question on how quickly people move from one treatment to the next. Is this based on blood tests, etc? I am kind of concerned about the lack of information I'm getting from the doctors lately. To my mind, there should be some kind of tests (ANCA levels?) occasionally. At the moment, my mom is on 10 mg. of prednisone and also Septra 3 x per week. She had actually been doing quite well since getting out of the hospital over 2 weeks ago, until she started the Imuran. I suppose I'm very wary of turning someone's body into a battleground -- after seeing what happened when my late husband was doing chemo for NSCLC lung cancer. One of his oncologists was young and very aggressive and probably pushed things too far with one of the lines of chemo -- kept going with it after some indication that it had harmed his heart -- and the next treatment really did a number on his heart. Once bitten, twice shy.

    One other question - since well before my mom was diagnosed, she used to cough up sputum - no colour to it -- but she continues to do this -- has continued through the cyclophosphamide-prednisone treatments. Is this an indication that treatment is not working or sufficient?

    Well, that's about all that I can write tonight. I'm caring for my mom right now and the prednisone has her up and restless this evening! Must go and keep her company.

    thanks and take care all.

    bev

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    Bev, have the docs considered RTX (rituximab, rituxin) infusions? I don't know what special issues might apply to someone of your mom's age, but RTX has become the med preferred by many docs in severe cases. It has also been used for maintenance, after the disease has been knocked down quite a bit by something like CTX. Since I haven't taken it, I can't say much, but I see Pete is on here, who does take it, and maybe he will chime in. Maintenance is usually begun right away, with whatever drug is chosen, or that's my impression. I was started on methotrexate for maintenance while still taking a reduced dose of cyclophosphamide. There seem to be many protocols used, and docs are still learning. Some patients can't take one maintenance drug but may tolerate others. All of them have some side effects which may be gotten used to, most are probably not as harsh as CTX. Most of us continue to take at least a small amount of pred. In your mom's case, it would be nice if she could get off that, it sounds like, because of its effect on her. And yes, it is common for most of us who've had sinus and/or lung involvement to cough up bits of phlegm. It sort of collects in there. If it is colorless, that is probably a good sign. I understand in your caretaking role you may not easily be able to respond or reply as soon as you'd like. It sounds like you are doing a good job of processing the information. Best wished to you and your mom.
    Anne, dx'ed April 2011

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    Anne,

    When my mom was first diagnosed, there was some talk of RTX, but I can't remember why that was not chosen. i now wish that had been the choice as I have a friend whose 90 year old mom has been treated with RTX for cancer and has found it pretty easy on her body. I have been doing some looking around at maintenance drugs and was wondering if anyone has been taking Septra -- I noticed some European studies in which co-trimoxazole was given for maintenance. It seems that my mom can handle that as she has been getting it 3 x a week through the cyclophosphamide treatment. Maybe the Imuran would be okay at a low dose. Thanks for the feedback about the phlegm. I've been worrying terribly about her coughing up anything as I was worried it indicated a flare. However, in reading through some threads on this forum, I began to get the impression that coughing up some kind of phlegm might be common. I always check it for any blood or discolouration and, in fact, that's how I recognized a couple of infections while she was on cyclophosphamide. Anyhow, still trying to learn what I can about this disease. Thanks for any and all information!

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    I have been taking Septra (aka bactrim) 3x weekly since I was diagnosed with no problems. It's used as prophylaxis against the type of pneumonia associated with HIV/AIDS. I'm coming up on six years in with the disease and doing well at age 70.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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