Backstory:
I've been mildly flaring for two years. The only thing that got me into remission was steroids. I couldn't wean from the steroids without getting real sick. Once off the steroids, my adrenal glands never woke up, so I now have secondary adrenal insufficiency and take a replacement dose (20mg hydrocortisone). I have to bump the hydrocortisone occasionally. I've had two adrenal crises one landed me in the ER and the other put me in shock and I was hospitalized for several days.
I tried remicade and it never got me into 100% remission and my body started rejecting it. We tried monthly infusions and then we doubled the dose and it was like my body went into overdrive and it stopped working completely.
I'm now on Humira (Aug 2016) with 6MP. My 6MP dose was originally 50 and upped to 75mg back in Nov after some bloodwork. The Humira was lasting almost the two weeks and I was able to eat some cook veggies for the first time in two years! Starting in Dec I noticed the humira was only lasting a week and I couldn't eat veggies again. My doc checked my levels and my trough Humira was 1.1, antibody 48 and 6MP was 209. He wants me to start weekly Humira and upped the 6MP to 100. Per his instruction, I did two injections last Sunday and I swear it didn't do a thing... not worse, not better, but definitely no change. Normally I could eat veggies two or three days after injection, but not this time.
I kinda want to just say lets pull the plug on the Humira, but can't find info on what antibody level is enough to stop.
Should I give the new dose of Humira and 6MP a chance? Anyone else experience this and were able to get Humira to work? Anyone else have this level of antibody and your doc decided to stop?
I really want to get into remission so I can loose the steroid weight gain (90lbs). I also have severe asthma and other breathing issues (several rounds of pneumonia and bronchitis all of these were pre-biologic and pre-6MP) and needed 7 rounds of high doses of steroids which helped increase the weight gain.
I've been mildly flaring for two years. The only thing that got me into remission was steroids. I couldn't wean from the steroids without getting real sick. Once off the steroids, my adrenal glands never woke up, so I now have secondary adrenal insufficiency and take a replacement dose (20mg hydrocortisone). I have to bump the hydrocortisone occasionally. I've had two adrenal crises one landed me in the ER and the other put me in shock and I was hospitalized for several days.
I tried remicade and it never got me into 100% remission and my body started rejecting it. We tried monthly infusions and then we doubled the dose and it was like my body went into overdrive and it stopped working completely.
I'm now on Humira (Aug 2016) with 6MP. My 6MP dose was originally 50 and upped to 75mg back in Nov after some bloodwork. The Humira was lasting almost the two weeks and I was able to eat some cook veggies for the first time in two years! Starting in Dec I noticed the humira was only lasting a week and I couldn't eat veggies again. My doc checked my levels and my trough Humira was 1.1, antibody 48 and 6MP was 209. He wants me to start weekly Humira and upped the 6MP to 100. Per his instruction, I did two injections last Sunday and I swear it didn't do a thing... not worse, not better, but definitely no change. Normally I could eat veggies two or three days after injection, but not this time.
I kinda want to just say lets pull the plug on the Humira, but can't find info on what antibody level is enough to stop.
Should I give the new dose of Humira and 6MP a chance? Anyone else experience this and were able to get Humira to work? Anyone else have this level of antibody and your doc decided to stop?
I really want to get into remission so I can loose the steroid weight gain (90lbs). I also have severe asthma and other breathing issues (several rounds of pneumonia and bronchitis all of these were pre-biologic and pre-6MP) and needed 7 rounds of high doses of steroids which helped increase the weight gain.
