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  • Amyloidosis and Ankylosing Spondylitis

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    Old 03-26-2008, 08:26 PM   #1
    Lady Olivia
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    Amyloidosis and Ankylosing Spondylitis

    Hello,

    I am just writing to see if anyone out there has Amyloidosis. I have recently been diagnosed with this condition as a throw off from my AS after not getting the right treatment and not getting my AS under control. They say that I have less than 12 months to live. I would like to hear from anyone that is in a similar situation.
    Thanks
    Olivia

     
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    Old 04-01-2008, 02:30 AM   #2
    singel352000
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    Re: Amyloidosis and Ankylosing Spondylitis

    Hi Lady Olivia I am So Sorry to hear your bad news. I can not Even try to under stand what you are going through. I am also suffreing from AS & D.I.S.H that is a calsifcation of the ligaments were thay join onto the bones in the spine which restricts my flexability & bending. But this is not about me.
    I read all your helpfull coments to all the ones you reply to & help I have lerned a lot from your comments . Would you be able to pass on your symtoms that led to your Amyloidosis. From what I can see on this bord, there is not much infomation. How long have you had AS & what tretment have you been on. And now you know what you have Is there some thing thay can do to help. Once again I think we are all thinking about you .

     
    Old 04-01-2008, 08:12 PM   #3
    Rita27
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    Re: Amyloidosis and Ankylosing Spondylitis

    I am so sorry. I will pray for you, and remember whatever they tell you, don't give up! Try other doctors or treatments. Good luck and God bless!

     
    Old 04-03-2008, 11:31 PM   #4
    Lady Olivia
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    Re: Amyloidosis and Ankylosing Spondylitis

    Hi Singel,
    thank you for your response and good wishes. My condition started in 1991 but wasnt diagnosed until 2004. Until then it was called connective tissue then housewife syndrome (i worked fulltime so i couldnt see how) and the hla b27 spondyloarthropathy in 2000 was diagnosed. I was limited in movement as my knees both are huge and never go down then my hips came into play as well. I went onto celebrex which was wonderful for about two years and i took it when i needed it not on a regular basis. when i started taking it on a regular basis it ate my stomach away so had to stop. I then went onto methx which closed my esophagus and instead of taking me off it they increased the dose from minimum to maximum in three weeks so my body went into shock. I then started not eating as i couldnt and became constipated I was hospitalised and treated with enemas etc for constipation that was feb 2006 since then i have had diarrohea everyday some days up to 30 times. I lost weight i was 96kgs and became 42kgs within three months. I have no muscle no fat nothing I look and am anorexic. This then started me on the medication roundabout. I went onto remicade which was wonderful but didnt last long enough so that after four weeks i was back to where i began. They then put me onto enbrel which after five doses i was allergic to and my whole stomach went blood red within an hour so they took me off that put me onto arava which after two doses made me pass out so they took me off that and finally am on humira. In between all this they ignored my diarrohea and inability to eat. Finally i had had enough and said do something. They put me into hospital and not until eighteen months later did they come back with Amyloidosis diagnosis. Now they say that I have the AA strain of it which is better than the AL one and I could have up to five years to live now so maybe better treatment will come along. At the moment i am only on humira for AS and panadiene forte for diahorrea nothing else. I still cant swallow as the amyloidosis has affected my whole digestive system from tongue to rectum my heart my kidneys and now my nervous system. I am trying to stay positive well that is hard more focused on the future is a better way of saying it and appreciating all the wonderful prayers going out there for me. The hardest thing is watching my children go through this. i am going to write a book about living with a person with a terminal illness so that others out there can get an understanding of how it affects everyone in your life. I am way to young and have way to many things to do to let this silly thing beat me. This is just a slight overview if you would like more info just ask. I had btw 3 colon and endoscopies 5 ct scans 8 xrays 46 blood tests bone density scan bone marrow biopsy lymph node byopsy and heart byopsy all within the eighteen months. I am so over hospitals and doctors but i now have a really good team looking out for me as this condition is so rare and they can learn off me. I worry because my son carries the gene so a lot of guilt goes with the condition.
    Thank you Ruth also for your thoughts and prayers it is so comforting to know that there are such lovely people out there.
    Take care
    God bless
    Olivia

     
    Old 04-03-2008, 11:42 PM   #5
    Lady Olivia
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    Re: Amyloidosis and Ankylosing Spondylitis

    Sorry singel I didnt say what the symptons of the Amyloidosis was. First i had a swollen tongue but it would go down with water then I went off food just didnt want to eat sometimes my mouth would be terribly dry then terribly wet but mostly it was the diahorrea that got to me I couldnt go out and had to quit my job that i loved so very much. I get bloated now my eyes dont focus properly and I would have little funnies like not quite blacking out but nearly. My sinus would hurt as well even just crying was painful. It was the colon biopsies that picked it up first. The first one didnt but the second one did and the third one confirmed just how much of my digestive system was involved. Gee I have gone on a bit havent I If there is anything else you would like to know please dont hesitate if I can help just one person get an early diagnosis and better outcome then I am happy to write a book on here.
    Take care
    Olivia

     
    Old 04-05-2008, 10:01 PM   #6
    singel352000
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    Re: Amyloidosis and Ankylosing Spondylitis

    Thanks Olivia. You have been through It all, and I hope things take a turn for the better real soon. It is a worry for our children I have 5 from 41 down to 23 four girls & a boy.
    I will be starting on humira in abourt 2 weeks my rumi had me on Panafcortelone(R) since Dec It worked fine not much pain untill I tryed to do any thing and then my body told me that is enough go and laydown. Thay were going to put me on embrel but I have had a few Irites attacks Rumi said humira will be better so thats were Iam up to now
    I will keep an eye on all the things you said and if any start to show up I will get them chequed out thank,s for your reply. Singel

    Last edited by singel352000; 04-05-2008 at 10:03 PM.

     
    Old 04-07-2008, 11:12 PM   #7
    Lady Olivia
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    Re: Amyloidosis and Ankylosing Spondylitis

    Hi Singel,
    Wow you have a busy time too with kids. Have any of children tested positive to the same illness as you? The only side affects of the humira I find is hair loss and I get a little confused and tired for the first two days but the freedom in movement that it gives me is so worth it. I hate my hair falling out though. I find that if you put an icepak on your tummy first and freeze the area it takes so much of the pain away from the injection plus if you get your humira to room temp even just hold it in your hand for a few seconds before injecting it makes a really huge difference. I wish you all the best.
    Take care
    Olivia

    Last edited by Lady Olivia; 04-07-2008 at 11:21 PM. Reason: made a mistake

     
    Old 04-08-2008, 06:24 PM   #8
    singel352000
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    Re: Amyloidosis and Ankylosing Spondylitis

    Hi Olivia, The children have not been tested but thay will in time . The strange thing is my wife,s brother had AS for years total wheelchar bound up untill he past away 12 month ago from a brain tuma My wife has the pain in the joints but no HLA-B27 gene. We have tryed to find out what meds he was taking to see if any could have caused the tuma but no one can tell us and that concerns me with this drug, I will talk to rumi next time to find out If I should be concerned. Thanks

     
    Old 04-09-2008, 12:42 AM   #9
    Lady Olivia
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    Re: Amyloidosis and Ankylosing Spondylitis

    Hi Singel,
    It is big decision which medication to take just as long as you take something and dont let it go untreated then you wont end up like me. I found out today how I will probably die so am really down at the moment. I shouldnt have read the cardiologists report. I like not knowing it keeps me happy and when I am happy I dont feel as sick. I am sorry to hear of your brother in laws passing. They do say these medications can cause cancer of any kind. I am still not sure if it gave me the amyloidosis either it will be something I will never know. I just know the quality of life that it gives me is worth it. I would hate to be in a wheelchair as well as this illness. This condition AS affects everyone differently and so do the meds for it. It truly is try until you buy. I wish you and your family all the best.
    Take care
    Olivia

     
    Old 10-05-2008, 03:40 AM   #10
    md241
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    Re: Amyloidosis and Ankylosing Spondylitis

    I was diagnosed with amyloidosis back in late 2006 after a severe bout of non-stop coughing. I had a bronchoscopy done in early 2007 that found it. However, being such a rare disease, my family doctor, pulmonologist, and hematologist/ oncologist(who also performed a bone marrow biopsy), had never treated it so I was referred to Mayo Clinic, where I spent 10 days in May 2007-had another bone marrow biopsy, blood tests, ct scans of my lungs,pulmonary function tests,heart ultrasound, etc. Apparently I had a doubly rare form of amyloidosis called AL Primary Pulmonary Amyloidosis! It is extremely rare for the amyloids to end up in the lungs. I saw pulmonary specialists and oncologists/hematologists-they unaminously said I should receive a stem cell transplant-after hearing the horrendous side effects(they basically blow up your immune system and start from scratch, I told them "no thanks, what's another option". They finally came up with an oral med combo of Melphalan/ Decadron to be taken 4 consecutive days a month, for 12 months. The doses weren't very high(18 mg a dose for Melphalan, which is one of the milder chemo drugs, and 40 mg per dose for the Decadron). I really had no bad side effects at all, just some diarreah and a wierd taste in my mouth which went away a day after I stopped it till the next month. I did have to undergo a couple of blood transfusions early this year as the Melphalan dropped my Hemoglobin to under 8. I complted the 12 month regimen that Mayo recommened to my hematologist in July, and my lab work(24-hour urine,CBC, lambda light chains), were such that the doctor my levels were nearly normal! so he took me off the chemo completely for 3 months, and I just had my lab work done this past week. I see the doctor this Friday to see how I've done without the chemo-I think the news will be good as I haven't noticed any increase in symptoms(my breathing, since it's in my lungs, the #1 symptom).So apparently, the chemo/steroid combo did its job over the months. Hope this helps you!

    Mike

     
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