- Joined
- Jun 20, 2011
- Messages
- 6
Hi all
I really do need some help and advice please, I'll be very grateful if anyone can help.
I've had Crohn's now for around 8 years, have a 12cm stricture at the ileaum and surrounding large and small bowel, and have had numerous colonoscopys and treatments. They have tried all types of medication and I am currently on 50mg of Azathioprine and 8 weekly Infliximab, usually 5mg/kg but last time I had a 10mg/kg.
This combination seemed to work for the first year, with significant improvement in my colonoscopy results. I wasn't rushing to the loo, wasn't throwing up and had a lot less pain. I seemed to be myself again and was very happy!!
However, at the beginning of last year, I contracted Parotitis, which is an infection of the parotid gland and I couldn't eat, talk or function properly. I was hospitilised for this for 4 days, and discharged fairly healthy. Since then, I have had 4 tonsillitis bouts, with an infected mouth that was so bad I again couldn't talk or eat. With numerous bouts of anitbiotics it did seem to calm down, but ever since the Parotitis, I can't seem to shift any kind of illness. I feel constantly ill, tired, hot and sick, with a permanent sore throat, cough and stuffed up nose.
They then cancelled my infliximab infusions many times due to a low WBC and low neutrophil levels, saying it was too risky to give me another immunosuppressent. This carried on for a few months, until they agreed to give me a double dosage of the infliximab (10mg/kg) because my CRP marker was creeping up and I was experiencing all the signs of a oncoming flare up, pain, rushing to the loo several times every day, diarhhea, vomiting, cuts and sores on my mouth.
With the increased dosage it seemed to 'mask' the flare up, for want of a better description, everything was milder, but still there? Im still permanetly tired, feeling sick, having to rush to the loo, diarhhea, and just generally extremely fed up. The belly also is so swollen I look 4 months gone
As I write this, I have just gotten off the phone with my specialist nurse, who said I could go to hospital for my next dosage of infliximab if I wanted to, but she did not seem happy with the results anymore, and is worried about my blood test results. She instructed me to stop taking the Aza, and to come into clinic asap to discuss possibly moving to Humira?
What I would like help with is:
Has anyone else noticed a reduction in the results of infliximab as time goes by?
Has anyone been on Azathioprine and Infliximab and noticed they were getting continually sick?
Has anyone switched to infliximab to humira, and with what results?
The side effects of humira, eg lymphoma, heart failure etc, did anyone get as scared as I am about this?
Has anyone decided to go with surgery at this stage? I'm seriously fed up of taking all these meds and STILL feeling horrid.
My consultant didn't really explain surgery to me well, as he started off with the line 'surgery like this could affect your chances of having children in the future', to which I promptly burst out crying as I really do want children, and at 26 years old, I'm scared of risking it?
What was your recovery time from surgery, and any complications?
Can anyone advise me also as to why I'm being switched to humira?
My team at the hospital are good, they get things done, but they simply don't seem to have the time to sit and talk me through these things, I feel completely lost and alone and frightened, I don't know which way to turn to be honest. So if anyone would be so nice as to share their stories with me, and possibly advise me on what to do next I'd be so grateful. I simply cannot go on as I have.
Thank you so much for reading.
I really do need some help and advice please, I'll be very grateful if anyone can help.
I've had Crohn's now for around 8 years, have a 12cm stricture at the ileaum and surrounding large and small bowel, and have had numerous colonoscopys and treatments. They have tried all types of medication and I am currently on 50mg of Azathioprine and 8 weekly Infliximab, usually 5mg/kg but last time I had a 10mg/kg.
This combination seemed to work for the first year, with significant improvement in my colonoscopy results. I wasn't rushing to the loo, wasn't throwing up and had a lot less pain. I seemed to be myself again and was very happy!!
However, at the beginning of last year, I contracted Parotitis, which is an infection of the parotid gland and I couldn't eat, talk or function properly. I was hospitilised for this for 4 days, and discharged fairly healthy. Since then, I have had 4 tonsillitis bouts, with an infected mouth that was so bad I again couldn't talk or eat. With numerous bouts of anitbiotics it did seem to calm down, but ever since the Parotitis, I can't seem to shift any kind of illness. I feel constantly ill, tired, hot and sick, with a permanent sore throat, cough and stuffed up nose.
They then cancelled my infliximab infusions many times due to a low WBC and low neutrophil levels, saying it was too risky to give me another immunosuppressent. This carried on for a few months, until they agreed to give me a double dosage of the infliximab (10mg/kg) because my CRP marker was creeping up and I was experiencing all the signs of a oncoming flare up, pain, rushing to the loo several times every day, diarhhea, vomiting, cuts and sores on my mouth.
With the increased dosage it seemed to 'mask' the flare up, for want of a better description, everything was milder, but still there? Im still permanetly tired, feeling sick, having to rush to the loo, diarhhea, and just generally extremely fed up. The belly also is so swollen I look 4 months gone
As I write this, I have just gotten off the phone with my specialist nurse, who said I could go to hospital for my next dosage of infliximab if I wanted to, but she did not seem happy with the results anymore, and is worried about my blood test results. She instructed me to stop taking the Aza, and to come into clinic asap to discuss possibly moving to Humira?
What I would like help with is:
Has anyone else noticed a reduction in the results of infliximab as time goes by?
Has anyone been on Azathioprine and Infliximab and noticed they were getting continually sick?
Has anyone switched to infliximab to humira, and with what results?
The side effects of humira, eg lymphoma, heart failure etc, did anyone get as scared as I am about this?
Has anyone decided to go with surgery at this stage? I'm seriously fed up of taking all these meds and STILL feeling horrid.
My consultant didn't really explain surgery to me well, as he started off with the line 'surgery like this could affect your chances of having children in the future', to which I promptly burst out crying as I really do want children, and at 26 years old, I'm scared of risking it?
What was your recovery time from surgery, and any complications?
Can anyone advise me also as to why I'm being switched to humira?
My team at the hospital are good, they get things done, but they simply don't seem to have the time to sit and talk me through these things, I feel completely lost and alone and frightened, I don't know which way to turn to be honest. So if anyone would be so nice as to share their stories with me, and possibly advise me on what to do next I'd be so grateful. I simply cannot go on as I have.
Thank you so much for reading.
