When the drugs dont work....they just make you worse

[sickinlk]

see I used words from a song there to start. (the verve)
well today I had 2 clinic apps in my local hospital. ENT and GI.
Since xmas '12 ive had a hum in my ear and my gp said there was fluid in it and called it glue ear. it unheard of in adults. so the specialist had a look and I had a hearing test and he wants to do further tests to see why this has happened. he gave me a nasal spray to use for 2 months as well.
So then I saw my GI. im on remicade and for the past few months my LFT's have been rising steadily but not alarmingly, also the remicade is loosing its effectiveness (surprise surprise..im steroid resistant and got pancreatitis from the 5asa's which didn't work either). so my next option is 1 of 3...
1. increase remicade dose and interval.(noooooooooooooooo my liver)
2. add in 6mp(nooooooooooooooooooo my pancreas)
3. start humira. (meh)
so I don't know what to do for best really. humira sounds like the obvious choice but then im out of options ifyouknowwhatimean. should I give the 6mp a chance at least I mean worstcasescenario I get pancreatitis again. I could take it, as long as the don't scrimp on the pain meds that is.
so I flaring now. no blood so far 3 wks in but its interfering with my life again. so I kinda need to decide soon. I am positively in a mood about this so I wrote this rant.
thanks for reading
hugs
ju

 

[mwkwmn]

Deciding which medication to take is tough as they all have side effects. I was in the same shape and had to decide whether or not to take tysabri. After a lot of thinking and research I decided on tysabri and it did help but then insurance changed and I've been fighting them for coverage. I can only wish you luck in your decision,unfortunately we have to take medication to help control the symptoms. I hope the one you choose helps you very soon.

 

[tots]

I have decided tonight that dealing with this disease is
exhausting! Oh, and then there are the symptoms of the disease
we deal with!


I hope you feel better soon


Lauren

 

[xSophiexx]

sickinlk omg ive been having hummy ear tooo! ill be sitting there and all of a sudden itll come on for a few mins then go sooo annoying! also on remicade after having issues with pred and aza (cant ever take any thiuprine again)
the humira dilemma is coming up with me too its scary to use your last option!! has your gi made any suggestion? xx

 

[sickinlk]

im gonna give 6-mp a try. im so scared it will give me pancreatitis. it has to be the worst pain in the world. fingers crossed it works.
my gi suggested humira if that doesn't work and that is the final option for me. I said "then what, surgery?" and he that that decision is up to me and when ive had enough of it all and want the surgery he'll do it.
get your ear checked out. the EnT guy gave me a labs list to get done today that includes toxoplasmosis ,rubella, herpes, cmv, mono and allergies. it could be down to loads of things. ive started a steroid nasal spray and a pill for meniere's disease. soon ill be a walking pharmacy.
ju