Hello....

[Mackie78]

Hi Folks,

I got diagnosed about 7-8 years ago, after the usual mis diagnosis and 'come back in 3 months if you still have symptoms' advice from GPs.

Eventually I got diagnosed with a severe case of Crohns/Colitis.

I took Asacol/Mesalazine 800mg daily but this did nothing. I then took 40mg of Prednisolone for 22 weeks which was a real bind psychologically but it got me well again and I decreased the dose. However I couldn't get completely off the low dose of Prednisolone, so I took Azathioprene which worked well for about 12 months but the effects dwindled so my consultant moved me onto Methotrexate for 18 months. This worked amazingly well, but my white blood count started dropping to the point where it got to 2.3 at which point they stopped me taking it.

At this point I felt completely well, so they let me go without any meds other than Asacol. After about 3-4 months I was flaring again and back onto the Prednisolone and back to the consultant.

Then I started Infliximab/Remicade and the results were very good. After 18 months the effects started to fail so I doubled the dose by having it every 4 weeks instead of 8.

However in the last 6 months things have started to deteriorate again. I am in mild flare now but it seems to be getting worse week by week. There is the potential for Humira and after that surgery, but I am interested in exploring if Stem Cell Transplant (surgery would stop me in my current job) may be an option for me, hence I found this great forum whilst searching online. Wish I had found it earlier!!

I am also joining as I would like to shre my experiences with other people and if possible help anyone out in any way I can.

 

[Grumbletum]

Hi Mackie, it's nice to meet you - just wish it could be in better circumstances. Your story sounds very familiar, having read the diagnosis and treatment story of others on the forum, and from kind of following your footsteps!
I don't know much about Stem Cell treatment, but I hope that it, or Humira, whichever you opt for will bring you a long-term remission.

 

[glum chump]

Hi Mackie:

Welcome to the forum! Yes, there are people who've charted their amazing journey's with stem cell treatment on the forum and I'm sure you'll find their story to be quite helpful as you try to figure out what next steps you take.

I'd been on Remicade as well and it failed quite quickly. Like you, my GI suggested Humira. One of the things I liked about Humira was that it was self-administered and only required a few minutes (once I figured out how to do it!) as opposed to Remicade which could take up an entire afternoon.

Along with the stories on stem cell treatments, the Treatment section on this site also has a 'Humira' subforum which you might want to check out.

Looking forward to reading your posts....

Cheers,

Kismet

 

[xJillx]

Welcome, Mackie! I am sorry to read Remicade is not working as it once did. But many due well with Humira after being on Remicade. I hope it will do the trick for you!

If you are interested in Stem Cell Transplants, you should red Mr. Ziggy's journey through the process.

 

[Mackie78]

Hi Folks,

Thanks for your kind sentiments!

I have read Mr Ziggys accounts and it sounds like it may be possible for me and either way it makes for an interesting read.

I think after reading some more info on the forum I might make a few posts in the Humira sub forum and ask some questions.

:thumright: