My Mother diagnose with vasculitis

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Hi

My Mother was recently diagnosed. Her creatine

Levels went from 140 to 240 and now 560.

Shecis receiving prednisone and chemo drugs. Somw with IV. Meds are not working and supposedly they work on almost everyone.

She is 85. I am scaref. I justvlist my Brother to Lymphoma in Jan.

Any thoughts?

Vivian

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26 Replies

  • Posted

    Being honest it doesn't sound good, at 85 yrs old everything is against your mum these damn drugs fill your system with toxins and sends your body into hyperspace, if I were you start looking for a good alternative to meds, maybe say do it with juicing, or good nutrition at your mums age these meds will kill her no joke, tell your  mum to take charge of her own body and not let doctors dictate how this disease should be treated. good luck.

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    • Posted

      Thank you.

      Drs are saying without them she will dir and

      Does not have much time left. I am in Canada so don't have much to go on.

      Thank you for answering.

      Viv

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    • Posted

      I am in Canada. In NB. My son has wonderful dedicated specialists.

      There is a Canadian support group. Check out this site http://www.vasculitis.ca

      If your mother was generally healthy before the vasculitis she might respond well to the meds. It also depends how bad it got. The meds made my son FEEL

      Better. Good Luck

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    • Posted

      Hi

      Thank you. My Mom did not respond to treatment. Her kidneys shut down. Hospitalized now. Drs trying to figure out what to do. Het age does not help.

      Vivian

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  • Posted

    She received dialysis 3 times this week but the treatment she had prior which is the cyclophosphamide destroyed her hemoglobin and also her bone marrow.

    Drs will give us options tomorrow. She is nit tolerating dialysis too well.

    She is also anemic. Not eating

    What do you think?

    Vivian

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    • Posted

      Sorry to that.  I was hoping once she started treatment she would feel better.  How are her spirits?   Reading other peoples experiences with this disease, sometimes it takes a while to find the right drug to help.  If she was my mom,  I would follow what the Doctor says and mostly what she says.  You might need some frank conversations with both.

      God Bless and Good Luck

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    • Posted

      Thank you. We will see what Drs say tomorrow. Her age and spirits are not helping. I am afraid they may suggest a feeding tube at which time we will need to make a decision as as she is not eating.

      She almost does not understand what is going on anymore. Some confusion I think from prenisone or delirium.

      Thank you for the website. Glad your Son

      found good doctors. My Mother is too sick to fly. We are in Toronto.

      Vivian

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  • Posted

    Hi Vivian,

    I know you and you mom are very scared as vasculitis is extemely serious. The important thing to remember is to have faith and a positive attitude.

    I was diagnosed with Wegner’s Granulomatosis in April of 2012. My treatments included fairly high doses of Prednisone (60-40 mg daily) along with monthly infusions of the chemo drug Cytoxin. During this time I did not have any kidney involvement.

    Around April of 2014 I experinced a flare up with my Wegner’s.

    My Rheumatologist then decided to switch to 4 weekly chemo infusion of Rituxan. Before the infusions, my creatine levels were normal (below 1.30) Starting the infusions, my Oncologist noticed my creatine levels rising eventually getting to 2.70. Being concerned she recommended I see a kidney specialist, Being from Houston I eventually was referred to doctor Akinsanoye Dosekun, a Nephrologist working in the UT medical center also in Houston. I was very impressed with his expertise in working with vaculitis. I was immediately admitted into a hosptial to recieve 3- 1000mg infusion sessions of steriods over a 3 day period followed by a Cytoxian infusion and then continued those sessions on a monthly bases for 6 months. My creatine levels starting falling immediately. Today I am back to under 1.30 eventhough I was told I would probably be at a higher level such as 1.40

    I would advise you or your mom's doctor to get in contact with Akinsanoye Dosekun for a second opinion. Here is his contact information.

    Akinsanoye Dosekun Nephrology

    6410 Fannin

    Houston, TX 77030

    Phone (832)-325-6545

    Fax (713)-512-2247

    I hope this helps. Wishing the best for you and you mom

    Melvin

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    • Posted

      Thank you Melvin.

      Unfortunately my Mother's condition shut down her kidneys.

      Dialysis is not working. Her prognosis at

      this time is extremely poor.

      I do appreciate your reply and glad to hear you are doing better.

      Vivian

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    • Posted

      Hi Melvin I to have WEGNERS. I was diagnosed in April 2015 . I live in Spokane Washington. I have a WONDERFUL Doctor ( Rhuematologist & Kidney & Heart etc ) I do the Rituxan every 6 months 1 treatment every week for 4 weeks. Just wanting to know what is it like to have a FLARE UP ?????

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    • Posted

      My husband was diagnosed with wegners granulometosis with polygamists last February before he was diagnosed he was fit and well however he sadly passed away in August due to his condition he was only 52 years old. I often wonder if he was diagnosed sooner would he still be alive today
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    • Posted

      Hi Vivian

      I am sorry to hear that your mom is not doing well.  How is she?  Are they making her feel comfortable?  Unfortunately her age was working against her.  Don't stress about not being able to fly with her.  Its not like the old days.  Info. is available and is shared among Doctors. I hope you are coping well.  Take Care of yourself.

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    • Posted

      That's awful.  This disease mimics so many simple ailments that diagnosing it  often comes after the kidneys or lungs are damaged.  Everyone is sooo different.  Some people have it quite mild and others, after only a few months of being ill have total kidney shutdown and coughing up blood.  It sounds like your husband was of the later.   My son got sick in March, by the end of May he was coughing up blood.

        There will always be What If's when a loved one passes.  God Bless and take care.

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    • Posted

      Thank you that's how it started then constant nose bleeds double vision followed by the bridge of his nose collapsing it was an eye specialist that spotted the condition unfortunately it was too late as most of the damage to his lungs was irreversible

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    • Posted

      Hi Jeanene,

      I am not really sure how to answer your question. I guess first of all it depends on how your doctors defines a remission state. I am seeing 5 different specialists for my Wegners; Pulmonary, Rhuematologist, Oncologist, ENT, and Nephrologist. Although the Rhuematologist should be the main one in charge, my Pulmonary and Nephrologist have been giving input. In fact my Nephrologist had been driving  treatment over the past 2 years. There has been a disagreement between the Rhuematologist and Pulmonary/Nephrologist over the meaning and numbers for a PROTEINASE-3 ANTIBODY (c-ANCA) blood test. 

      My symptoms for my Wegners when I first was diagnosed was the following: severe sinus infection (to the point I was have sinus headaches plus my teeth were hurting), nose bleeds, strange nose crusting, a saddle nose, severe fatigue, loss of appetite and weight loss. My first Rhuematologist was very young and I was her first Wegners patient. Although I was not following blood tests back then as closely as I am now, she was keying off a SED rate blood test that was off the charts. It normally should be under 20. She started my treatments with 1gram of Cytoxin on a monthly basis plus a high daily dosage of Prednisone (60mg). After about 6 months of the Cytoxin infusions my SED was significantly lower at around 25 but subsequent  tests was starting to rise and she was concerned it was still too high. She wanted me to get a second opinion with a Rhuematologist in the Houston Medical center who had an extensive history with Wegners and she recommended 4 weekly treatments of  Rituxan with a wait and see attiutude for several months after the infusions. Within a couple months my SED rate dropped to 6 and my Rhuematologist declared me in remission. I was put on Methotrexate (20mg weekly) as my maintenance drug

      Roughly 1 year later I started to have some fatigue. In that time frame my Rhuematologist decided to postpone her career to stay at home with her young children and I changed to her colleague in the same office. My wife convinced me to make an earlier appointment then my regular scheduled with the Rhuematologist. My SED rate was up to 72. He stated I had a "flare up" with my Wegners. He scheduled 4 weekly treatments of  Rituxan with a wait and see attiutude for several months after the infusions. It was during these infusions my Oncologist alerted me to my creatine levels were increasing (up to 2.7, normal is 1.30). It was at this point of time my Nephrologist took control of my treatments and he put me back on monthly Cytoxin infusions. My creatine levels quickly returned back to 1.30 or very close to those numbers. Here is where it gets tricky. He was keying off the PROTEINASE-3 ANTIBODY (c-ANCA) blood test and at this time he was specifically stating that a postive result was an indication of an active diease state or was about to go active so Cytoxin treatments continued either on a monthly or quarterly basis for awhile. In fact I was approached by a medical research team doing research on a new drug going into trials for vasculitis including Wegners called CCX168 with patients testing positive for PROTEINASE-3 ANTIBODY (c-ANCA). I ultimately did not get picked due to the study reaching the limit of participants in the study. My Pulmonary doctor was in agreement with my Nephrologist in the course of the prescribed treatment which was in disagreement with my Rhuematologis but conceded treatments to the Nephrologist. 

      Here is where it gets stranger. Roughly 4 months ago my Nephrologist started stating that I should not put to much in the PROTEINASE-3 ANTIBODY (c-ANCA) numbers which was180 degrees from his previous position. My appointment 2 weeks ago, he conceded that PROTEINASE-3 ANTIBODY (c-ANCA) number has no meaning with the active state of Wegners and only with the initial diagnosis of Wegners. I found this all strange and confusing. I started treatment for high creatine levels on 6/4/2014. On 1/12/15, I tested negative for the PROTEINASE-3 ANTIBODY (c-ANCA) and since 7/24/15 the numbers have been all over the map with numbers from 11 to as high as 72. With this I started some additional research on the subject. Through all the medical jargon I found that 90% of patients with Wegners had PR3 antibodies and 60-70% had antibodies with no active disease state. 

         

      With this information I determined there is no blood test to determine if Wegners is in an active state and the only way to determine an active state is through symptoms which is what my Rhuematologist is telling me. You have to pay specific attention to what you symptoms are and maybe simple bloodtests such as SED rate, kidney fuction and etc. for your doctor to determine if you are experincing a "flair up" or not. Other than that bout of fatigue I experience back in 2014 I have not had any other symptoms therefore after my creatine levels went back to normal I may have been in a remision state and my doctors did not know it.

      My Rhuematologist has since declared me in a remission state and has put me on the maintenance drug Cellcept 2000mg daily.

      Dont know if this answers your question.

      Melvin

       

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    • Posted

      Very sorry to hear about you losing you husband to this disease. I was 54 when I was diagnosed over 4 years ago. The trouble with Wegners is that the symptoms look like  common Illnesses. I was being treated by my family doctor with antibotics for a serious sinus infection. When that didn't work, my ENT said it was allergies. My Wegners was indirectly diagnosed from a trip to the ER for feeling faint for low blood pressure (unrelated to the disease) during Easter church services in 2012. The ER doctor just happened to take x-rays of my lungs which showed lesions and then a very knowledgeable Pulmonary doctor who knew about Wegners.

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    • Posted

      That is pretty much what my son has been telling me.  C-ANCA is only good for intial diagnosis.  Once you have GPA you will most likely always test positive for this.  It is so important to be aware of your body and how you feel.  My sons relapse was diagnosed through how he was feeling and of course the dreaded sinus problems.  Meds helped him to feel better quick enough.  He has been on Rituxan now for a year. He started with 4 weekly infusions then again 6 months later with 2 weekly infusions.  His Dr. wants him off the prednidsone and started him on Methotroxate.  He feels ok now.  Thanks for the info.  I really appreciate people sharing their stories.  
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    • Posted

      Weird thing. I don't know if you can help me.

      My Mother is now in pallative butvshevus more alert eating more and more energy. Some output from urine.

      Dialysis stopped last Thursday.

      Any thoughts?

      Could she be misdiagnosed?

      Vivian

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    • Posted

      Probably not.  I have read that the only definitive confirmation is to biopsy an affected area.  If there was lung involvement then the lungs should have been biopsied or if the kidneys were involved then the kidneys.   With my son, he had very definite Wegeners symptoms.  Classic sinus problems, kidney damage and lesions on the lungs.  The Doctor did a blood test to check his ANCA.  That came back positive so the diagnosis was GPA.

      Maybe with your mom the meds finally started working.   What tests did they do to confirm the GPA.?  Still its great that she is more alert and eating.  Give her some favourite treats and say a prayer of thanks.

      Kathy

       

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    • Posted

      They can't do a biopsy because of her age.

      She tested positive gor ANCA.

      Mess did not work. They were stopped. Although she is still on an anti inflammatory similar to prednisone.

      Cyclophismide discontinued. They ruined hemoglobin

      Vivian

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    • Posted

      Hi

      Wishful thinking. Her creatine after dialysis stopped went up from 230 to 294 in one week.

      How quickly does it increase without treatment?

      Vivian

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    • Posted

      Going to be hard to say. Each person will be different. While I was taking Rituxan treatments my creatine levels jump from 1.30 to 2.70 in about 3 weeks. Getting back on Cytoxin treatments my creatine levels were back to 1.30 or around that  within a couple of months. Judging from other comments here, Wegners can be devastating to the kidneys in a very short period of time - weeks or months.

      Melvin

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