5 --> 10mg of Remicade?

[godsidekurt]

So today I learned my doctor wants to double my dose from 5-10mg of Remicade infused every 8weeks. I have been on it at this 5mg dose for nearly 2yrs now...and have noticed a huge reduction in symptoms. At my recent GI appt I shared again positive results, only mentioning in passing occasional abdominal discomfort at night. The doc decided to send me for a CT Scan, and today when I called to hear the results they said they recommended I take Azathioprine with Remicade and/or double my dose. Ironically tomorrow is my infusion, and they called at 5:15pm to tell me this via voicemail...I guess they dont need our consent anymore with this crap ???? Im calling the doc in the morning and Im inclined to hold off on raising my dose to double the amount so quickly over what I feel are very small symptoms (Ive had Crohns long enough to know when Iam flared up ya know?).

Just wanted your input, am I over-reacting? Should I bite the bullet and double the dose? I just fear the side-effects and cost involved with a doubled dose...this isnt a weak drug, I resisted going on it in the first place for years.

Appreciate your thoughts...

 

[scoutfinch]

My two cents: You should have a detailed conversation with your doctor as to why he recommends the increased dosage and/or azathioprine, especially as you don't experience many symptoms. Yes, true, just because you don't exhibit symptoms doesn't mean you don't have active disease. However, you need to fully know the reasons behind the recommendation - and also the risks/benefit associated. Only then can you make an informed decision.

On a personal note, I made the decision to increase my Remicade dosage about 6 months after starting it because it was losing its efficacy after only 3 or 4 weeks. I was afraid of the risky higher dosage too, but for me easing my Crohn's symptoms (mostly strong pain and nausea) is worth it. I'd also like to add that increasing the dosage hasn't increased the efficiency of the Remicade. My next option to consider is to shorten the time between doses.

 

[moogie]

I guess it depends on how much you trust your doctor. I've been with the same GI for 10 years. If he tells me I need to double up I tell him where do I sign.

I'm no doctor but if the normal dose does not hurt you doubling it up won't hurt you but might kick you right into remission.

If you do not trust your doctor you certinly should get his reasons for doing what he does.

Good luck

 

[Bizkid]

I went from 5 to 7.5 mgs and it made a big difference for me. 10 is the max I beleive.

 

[David]

I see it has been a few days now. Did you take the higher infusion? Did your doctor tell you what they saw on the CT Scan that concerned them?

 

[godsidekurt]

No I didnt take the higher dose...I refuse to do so until talking it over with my doctor. Once again Im open to the idea, however it just seemed like a quick decision which no one took the time to explain to me.

I hate feeling like a number in the machine...like doctors just quickly go through a methodical ladder of drugs and higher doses until the symptoms. I know it takes time, but I want to feel cared for by my doctor...like the have even a touch of empathy to consider the impact of doubling a dose on a patient. I resisted Remicade out of fear for 2yrs! Though Im glad Im on it and have had many of my symptoms go away, I still dont wink at the idea of doubling that dose all due to some abdominal pain every once and while.