Discussions that mention humira

Arthritis board


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 :)
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
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 :)