Serious Question? Quite scared.

[Danico85]

Hi there, ive just been given a bit of scary news..

I have Ulcerative Colitis (of 10 years)
Im currently on quite a high dosage of Azathioprine, Asacol and Salofalk enema which has been keeping me fairly out of any bad flair ups.

I get my bloods taken every couple of weeks to keep an eye on my blood count and so far ive had minimum issues in relation to my bloods.

Well today got a phonecall from the doctor and he told me i have to come off AL of my medication and go back in 1 week for further blood tests. He said there was a change in my bloods relating to my BONE MARROW. Although he told me it was more of a warning sign, he said he was slightly concerned.

my 1st question is... What can the issue be relating to my bone marrow, i keep thinking it might be luekemia or lymphoma or something. Or might it be something less problematic? should i be worried?

and 2nd question... Is it safe for me to come off ALL of my medication?

Thanks for taking the time to read and i would be extremely grateful if someone had any hints of what it might be? or should i be worried?

Thanks again.

Nicky

 

[grt73]

Hi Nicky
azathioprine can have all sorts of side effects that can start at any time whilst taking the medicine.
In relation to bone marrow it can inhibit the production of blood cells, in turn causing a load of issues.
Have a look at the link below, it explains all about it.

http://gut.bmj.com/content/34/8/1081.full.pdf

I too am on Aza and my doc told me all of the risks. From what I have read, if you stop taking it, reversal of the problem is fairly quick. Moving on from this your doc should change your meds for something similar to the link below.

http://en.wikipedia.org/wiki/Mycophenolate_mofetil

As for coming off all meds you have listed, I can't find anything out about any problems related with those meds.

Keep an eye on how you feel, if you notice anything different then go see the doc. Don't worry about leukaemia or anything similar. Although Aza is a horrible drug it's not as bad as some of the chemo drugs out there and the bad effects tend to disappear after stopping.

Importantly try not to worry:smile:

 

[Beach bum]

I can see why that would freak you out , the doc should have given you more info really. But I would second what Grt73 has said , my doc told me we have the regular blood tests to monitor for any changes and if anything did happen that stopping Aza would reverse it quite quickly.
Hope you get sorted soon though, try not to worry.

 

[calligator]

I was on Aza for a short time...I woke up on a Sunday with a dull ache across my back and then on the Monday felt awful. Went to work but part way through the morning I started getting quite intense pains across my stomach. I went to urgent care and they said to stop taking it immediately as they though it was effecting my pancreas. Within about a day and a half I felt so much better.

It is quite scary when you get calls like that from the doc but as they monitor us so closely if they see any small change they want to make sure that they stop everything immediately, take a closer look at the results or have more tests done and then if everything is ok maybe start you on the medication again.

 

[Johnnysmom]

My son had issues with his bone marrow too. 6mp caused his White Blood cell count and neutrophil level to go low enough that he had Leukopenia. It is bone marrow suppression. They cut his dose in half and added allopurinol, and it corrected itself in about 3 months. It is serious, but fixable.

Just keep in mind if you indeed are having bone marrow suppression that you are more susceptible to viruses. Stay away from sick people, and wash your hands religiously. If for any reason you had to go to the ER, make sure you let them know so they can keep you in an area separate from people who are sick.

This would just be my guess based on my son's past experience. Don't hesitate to call your Dr. if you are worried about it. I have done that with my son and they are completely understanding.

 

[Danico85]

Thanks alot for your responses, i was just really taken aback after the doctor phoned me. He said its more of a warning sign just now so im hoping it will correct itself and maybe a tweek of my meds is all it will need. Fingers crossed.

Just when he said 'bone marrow' .. you instantly think the worst