Good news and bad news from doc today

[andilynn09]

good news and bad news from doc today

I had another appt. with my GI today. Good news....pred seems to be giving me enough improvement in pain symptons that she is not going to stick me in the hospital for iv's. Bad news, I lost 6 more pounds in last 2 weeks. Not quite sure how that's possible considering since I"ve been on pred the last 2-3 weeks i've eaten more than i have in months.....??? She seems to think either i'm losing weight still because I'm getting more active again and not laying around 24/7...either that or pred isn't really helping disease, just masking symptoms.

Also got enzyme results back so I could start Imuran today. Of course, nothing can be easy, and my enzyme levels are low for this drug...meaning I am more likely to have more severe side effects, if I am even able to stay on it. For now I am on lowest dose of 50mg a day, and will be getting blood tested every week to see what Imuran is doing to me. My husband is rather concerned about the toxicity of this drug after all we've read, as am I, but I tell him we can't dwell on the what-if's or i'll make myself crazy and the stress will un-do the progress I've been making.

GI also thinks she is going to send me to U of Iowa Hospital for a 2nd set of eyes to monitor my CD....says she would rather be overly careful with the new meds and my enzyme levels. I guess I am glad she is being so thorough and cautious....but sometimes it just makes it harder to not freak out about everything, ya know?

 

[Valentina]

...we can't dwell on the what-if's or i'll make myself crazy and the stress will un-do the progress I've been making.

I think thats the best attitude to take.. as they try new drugs, the symptoms/possible side effects just seem to get worse and more scary with each new thing they try.. and if you focus too much on that, I really think you can prevent things from working well.. thats what I tell myself anyways
so stay focused on the good it can do! and I really hope it all works out for you. good luck.

 

[Donna]

I also think you have a good attitude. I am on Imuran for the second time around. They tried it the first time, and it didn't work. This time, I started out on 200 mg (whopper of a dose) cuz I am heavy. I also got tested weekly, then monthly, then every other month. And I will get another test to see how much Imuran is in my body to make sure its staying in there for the best results. It is a toxic drug, but I am fffffinnnnaaallllyyyy seeing results. So that's a plus.

As for your doc sending you to another specialist, I also battled this too. My GI sent me to another just to make sure he wasn't missing something. I felt like he was abandoning me and I was a hard case to handle. But, when I sat down with him and discussed it with him, I realized he just had my best interests at heart. So I was much happier with the idea. Fortunately, the second opions were the same as my original GI.

Just hang in there. There is no miracle cure, and its all hit or miss. Keep in mind too, the Imuran will work but it takes 3-6 months for you to see any improvements, and when you do, they will start out so minimal you might miss the improvements. So just go with the flow. You already have a good mind set...and you are on the road to recovery!!

Donna