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Six months on azathioprine.........

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Ulcerative Colitis
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Posted 7/27/2017 7:37 PM (GMT 0)
...and still flaring.

I am not as bad as I was but still got frequency and small amount of blood. Back on pred just so that I can go on holiday to Spain.

I saw my consultant last Monday, who is going to do a flexisig and then probably refer me for surgery depending on the amount of inflammation. I remember him saying to me when I was first diagnosed with proctitis, that surgery would never be a option. Little did he know that it would spread to the sigmoid and that all medical options would fail. Biologicals are totally out of the question because of my neutropenia and my neurological conditions. They would make it worse to the stage that I would have mobility problems and would probably not be able to walk. I can't risk that.



Life is a *****.
Posted 7/28/2017 1:25 AM (GMT 0)
Drat i had hoped you'd finally reach a remission. Assess with a scope and the decide accordingly.

Are you accepting of the prospect of surgery? As certainly the mental hurdle is the very hardest to jump...
Posted 7/28/2017 6:36 AM (GMT 0)
Have you had your blood levels tested to confirm you're taking enough to be in the therapeutic range?

Have you taken suppositories and/or enemas along with it?

If all that has failed, and you can't take biologics, have you talked to your doctor about one of the JAK inhibitors? There are several in trials right now.
Posted 7/28/2017 7:35 AM (GMT 0)
How about a different immunomodulator? Like 6MP?

Has your doc specifically ruled out Entyvio / Vedoluzimab? It is gut specific.
Posted 7/28/2017 2:32 PM (GMT 0)
I am sorry. I think there are some good suggestions, testing the level of the aza, adding more rectals? How about stool test, when was your last one? The thought of surgery is very scary, but i know in my case, I am so thankful I've done it and i no longer think about UC at all (except when I come here). I remember they told me it would never happen to me too. No one should really say never to any UCer, it happens to about 25%, & it really could be anyone. I wouldn't worry right now, enjoy your trip, get some rest, maybe things will start to look up soon.
Posted 7/28/2017 4:42 PM (GMT 0)
Thanks for your replies.

Had bloods done to test aza levels and am using both enemas and suppositories. Spoke to the ibd nurse today who said that they will refer me to another specialist with a view to thinking about meds outside the box. I have seen a rectal on IBD news today website that looks like it could be promising. It is called Cobitolimod. Has anyone heard of it?

Meanwhile, I am going to try to chill out on holiday and have my scope in 3 weeks time.
Posted 7/28/2017 5:19 PM (GMT 0)
Have you done FMT?
Posted 7/28/2017 5:26 PM (GMT 0)
Err Not thought about that but to be honest don't like the idea of it. Here in the uk it would probably be a no go anyway.
Posted 7/28/2017 5:58 PM (GMT 0)
What did the blood levels show? Are you in the proper range?

Do you use the enemas and suppositories frequently? Can you increase? How about Asacol or similar? Are you taking any oral mesalamine? I think another opinion and a fresh set of eyes is always a good idea... Cobitolimod sounds interesting, but it seems like it's still in studies. Maybe you can get into the study.
Posted 7/29/2017 8:11 AM (GMT 0)
Havent had blood results yet. I have been using salofalk enemas for the last 2 year religiously every night and also now use asacol suppositories every morning. I also take mezavant 3.6g. I do sometimes wonder if the enemas are now just irritating things or my body has just got so used to them that they just have no effect.

Will just have to wait to see what the other opinion is.
Posted 7/29/2017 4:41 PM (GMT 0)
Would you be able to try IVIG?
Posted 7/29/2017 7:45 PM (GMT 0)
Been having ivig for 20 years to treat my neuropathy. 40g every week.
Posted 7/30/2017 1:14 PM (GMT 0)

Mad Martha said...
I remember him saying to me when I was first diagnosed with proctitis, that surgery would never be a option. Little did he know that it would spread to the sigmoid and that all medical options would fail

Your post is hitting me kind of hard today.....at my initial consult after my first scope I was also told I had proctitis that was mild and would never put me in danger of needing surgery.

Fast forward 8 years and my latest scope this past Friday and my new doctor told me the inflammation has now creeped into my sigmoid and is definitely chronic UC. There is a constant state of inflammation that hasn't gone away despite being on several meds for many months.

I had been romanticizing the idea of trying a med-free approach to this.....but I must admit that your experience sounding so much like mine has given me pause.

Good luck and relief to you...and swiftly.
Posted 7/30/2017 8:36 PM (GMT 0)

Mad Martha said...
Been having ivig for 20 years to treat my neuropathy. 40g every week.

Holy smokes! that's a lot and certainly a very different protocol than here in Canada. Patients are only allowed 100g a month and that has to be approved. I was on 150g/month and that put my UC and Pg in remission but then it became very political and blood services cut my dose to 50g/month. I had a treatment on Friday and bowels already formed and going 2-3 times/day but severe urgency. Accident this morningsad
It takes 6 hours for the infusion. How long does yours take? My maximum rate of speed is 150.
Posted 7/30/2017 10:39 PM (GMT 0)
MarjieKay - I am so sorry I have made you feel like this. Remember we are all different. I truly hope that you also find relief. My other medical problems restrict certain medications and this may not be the case for you and these medications may be your answer.

U B Tough - I receive a concentrated form of Ivig called Privigen. I run at a rate of 180mls/minute so 40g takes just over two hours. It is not licenced here in the UK for my problem but it is the only treatment for my neuropathy and it works for that but does nothing for uC. I have only had UC for nearly 6 years. I can remember when I used to sit for six hours. I used to get 5 days of 40g per day every five weeks but I find that having one day a week now keeps me on an even plateau and stops my symptoms coming back.
Posted 7/31/2017 4:50 PM (GMT 0)
Thanks Martha. At one one they switched my regular brand of IVIG to Privigen claiming they were the same. Well Privigen didn't touch my UC so on my chart it's noted they are only to give me Gammunex. I wonder if you were to try that brand if that would help your UC?
Posted 7/31/2017 5:09 PM (GMT 0)
We have only limited brands here in the uk. I like privigen because it only takes a short time to infuse. I have to fit it round my work and my children. I was on vigam before that but that used to take the 6 hours.

I don't think they are all the same. I know people wh have tried different ones for their neuropathies and some have worked for them and some haven't. I haven't heard of Gammunex.

So glad it helps you.
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