Hi, first time poster. I check the site out every now and again but have kind of neglected my IBD because I have arthritis too and that has been my passion for research and forums and what not. I am starting to realize though that the crohn's is the real problem and although they are kind of seperate I notice that when my crohn's goes down the arthritis goes down(especially in the spine) which is against what most literature says.
On top of that I have a complicated case with other commodities like a lot of us I'm sure.
I'm on MTX and Humira(weekly). I am very sensitive to so many drugs(mainly potentially inflammatory ones). And I take apriso and uceris but I have to admit I am bad with these drugs because before the mtx/humira they never really helped and the uceris might make me worse. I have enemas too but currently not prescribed them.
The MTX is defenitely working but sometimes causes the crohn's and spondy to flare if I get low on my folic acid. That one makes me feel a lot better. And the MTX does too a lot of times. 2 shots ago it put me in almost complete remission for a day once it kicked in then left almost imediately!
I don't think the humira is really working. If it is it is kinda working in the background while the MTX is the workhorse.
We just did the level test/antibody test(not sure how accurate this test is - I prefer the physical exam to everything). I highly suspect antibodies or at least very low levels. I was on it like 6 years ago and it was crazy potent for the spondy(which was a lot less then). Don't think it worked as well on the bowel(maybe didn't take it long enough).
Also the crohn's has progressed so much in the last 4 years. It was very stagnant for the first 5 years. No progression of symptoms at all. They actually got a lot better over that time and for the most part did not use any meds.
So now I have pred on hand and what and I did a dose pack about a month ago and I thought I had notice it flaring me.
I also think I had an infection around the same time because my stools are normally tarry and mushy or broken up and always painful, urgency always too.
Well on a dime it changed to green and very liquidy, not exactly watery but very uniform and uniform in the chunkyness like spotty kind of and very soothing, felt great. I always feel better afterward but it hurts while I go this felt very good. That green stuff happened right as I felt sick and I noticed something else was going on(the flare started to get real bad here) then the stool changed back to normal after 3 or 4 days just in time to miss the stool sample I did, which wasn't cultured anyway.
I also felt sick, congestion in the throat and chest and head pounding. I never get sick.
I was just coming off some chemo(I think minor as far as that is concerned) for a viral infection. My leukocytes and blood was way off. Leukopenic, neutropenic, everything under the sun. And had cold sore out break on my lips that responded to valtrex.
Well that was the worst flare of my life and I was doing nothing wrong and it just kept getting worse for a month. Never has my chronic stuff ever done anything like that. I was so swollen and GI and everyone saw it.
I still think it was an infection, it was not just the normal stuff.
So I gave the uceris and apriso and folic acid and everything a break cause I thought they could be potentially offending.
As it turned out the valtrex was helping at first then was perpetuating the flare at the end. It was the only oral I was taking for a while so with trial and error I found this out.
So flare finally settled down then I noticed MTX started working again but sometimes would flare it too. Brought in higher doses of folic acid and that helped tremendously.
Reintroduced apriso today and uceris with the folic acid. Felt better immediately. So I am not sure if it was just the folic acid or that and the apriso.
Then I decided to do a 1 day pulse of topical medrol injection I had on hand and went from feeling a lot better, which has been happening recently after I take the folic acid and today it seemed even better than normal, to completely horrible. Everything tightened back up, swelled up(belling protruding bad, gut locked up, back locked up) and I just feel so bad. One of those awful flares where you wanna die.
So I know for a fact now that my assumption that the pred was offending was right. I am still unsure about the budesonide.
So I have a couple of hypothesis I hope someone who is really good at this can give me some input cause I know this stuff is complicated and I am not at expert at this as much as I am with the spondy.
So I think it is either an infection that is getting flared by pred and potentially MTX
MTX toxicity(this is for sure) that is being made worse by pred
A combination of the 2
Or something to do with my anemia that some of these drugs are making worse and causing those cells to attack me as they regenerate or something.
Also cut myself earlier and I didnt think the cut was too nasty but boy that thing is still draining 2 hours later. Like it would not stop bleeding for over 20 minutes till I threw a bandaid on it. I was trying to clean/apply pressure till I had to go get my workout in.
I think it might be that cmv or cdi(i think it is) or some type of virus in the GI track that was real bad for a while and is getting flared up a lil with the mtx toxicity/pred and maybe the blood thing too. Whatever it is, it is really messing up my baseline.
I am not sure if there are other factors at work that I'm leaving out.
I did take sleep meds till all of this(they are inflammatory, some worse than others) but when that flare really erupted those sleep meds became super toxic and I had to stop. The flare still got worse till it calmed down but if I would have kept taking it would have probably killed me or fused my spine or something. Havent reintroduced them and am glad I stopped because they were causing more sleep problems than they helped and arent good for the crohns so..
Guys thanks in advance! nice to meet everyone!
One last thing I could have sworn I have read about pred being GI toxic before but have been looking for lit on it today and cannot find what I found before. Also steroids are known to make infections worse. Not sure if they help or hurt the blood though(looks like they help but am not sure). This is another reason why I think it may be an infection but am not sure. If it does cause GI toxicity, maybe especially when combined with MTX that could be it too or a combination. Thoughts?
On top of that I have a complicated case with other commodities like a lot of us I'm sure.
I'm on MTX and Humira(weekly). I am very sensitive to so many drugs(mainly potentially inflammatory ones). And I take apriso and uceris but I have to admit I am bad with these drugs because before the mtx/humira they never really helped and the uceris might make me worse. I have enemas too but currently not prescribed them.
The MTX is defenitely working but sometimes causes the crohn's and spondy to flare if I get low on my folic acid. That one makes me feel a lot better. And the MTX does too a lot of times. 2 shots ago it put me in almost complete remission for a day once it kicked in then left almost imediately!
I don't think the humira is really working. If it is it is kinda working in the background while the MTX is the workhorse.
We just did the level test/antibody test(not sure how accurate this test is - I prefer the physical exam to everything). I highly suspect antibodies or at least very low levels. I was on it like 6 years ago and it was crazy potent for the spondy(which was a lot less then). Don't think it worked as well on the bowel(maybe didn't take it long enough).
Also the crohn's has progressed so much in the last 4 years. It was very stagnant for the first 5 years. No progression of symptoms at all. They actually got a lot better over that time and for the most part did not use any meds.
So now I have pred on hand and what and I did a dose pack about a month ago and I thought I had notice it flaring me.
I also think I had an infection around the same time because my stools are normally tarry and mushy or broken up and always painful, urgency always too.
Well on a dime it changed to green and very liquidy, not exactly watery but very uniform and uniform in the chunkyness like spotty kind of and very soothing, felt great. I always feel better afterward but it hurts while I go this felt very good. That green stuff happened right as I felt sick and I noticed something else was going on(the flare started to get real bad here) then the stool changed back to normal after 3 or 4 days just in time to miss the stool sample I did, which wasn't cultured anyway.
I also felt sick, congestion in the throat and chest and head pounding. I never get sick.
I was just coming off some chemo(I think minor as far as that is concerned) for a viral infection. My leukocytes and blood was way off. Leukopenic, neutropenic, everything under the sun. And had cold sore out break on my lips that responded to valtrex.
Well that was the worst flare of my life and I was doing nothing wrong and it just kept getting worse for a month. Never has my chronic stuff ever done anything like that. I was so swollen and GI and everyone saw it.
I still think it was an infection, it was not just the normal stuff.
So I gave the uceris and apriso and folic acid and everything a break cause I thought they could be potentially offending.
As it turned out the valtrex was helping at first then was perpetuating the flare at the end. It was the only oral I was taking for a while so with trial and error I found this out.
So flare finally settled down then I noticed MTX started working again but sometimes would flare it too. Brought in higher doses of folic acid and that helped tremendously.
Reintroduced apriso today and uceris with the folic acid. Felt better immediately. So I am not sure if it was just the folic acid or that and the apriso.
Then I decided to do a 1 day pulse of topical medrol injection I had on hand and went from feeling a lot better, which has been happening recently after I take the folic acid and today it seemed even better than normal, to completely horrible. Everything tightened back up, swelled up(belling protruding bad, gut locked up, back locked up) and I just feel so bad. One of those awful flares where you wanna die.
So I know for a fact now that my assumption that the pred was offending was right. I am still unsure about the budesonide.
So I have a couple of hypothesis I hope someone who is really good at this can give me some input cause I know this stuff is complicated and I am not at expert at this as much as I am with the spondy.
So I think it is either an infection that is getting flared by pred and potentially MTX
MTX toxicity(this is for sure) that is being made worse by pred
A combination of the 2
Or something to do with my anemia that some of these drugs are making worse and causing those cells to attack me as they regenerate or something.
Also cut myself earlier and I didnt think the cut was too nasty but boy that thing is still draining 2 hours later. Like it would not stop bleeding for over 20 minutes till I threw a bandaid on it. I was trying to clean/apply pressure till I had to go get my workout in.
I think it might be that cmv or cdi(i think it is) or some type of virus in the GI track that was real bad for a while and is getting flared up a lil with the mtx toxicity/pred and maybe the blood thing too. Whatever it is, it is really messing up my baseline.
I am not sure if there are other factors at work that I'm leaving out.
I did take sleep meds till all of this(they are inflammatory, some worse than others) but when that flare really erupted those sleep meds became super toxic and I had to stop. The flare still got worse till it calmed down but if I would have kept taking it would have probably killed me or fused my spine or something. Havent reintroduced them and am glad I stopped because they were causing more sleep problems than they helped and arent good for the crohns so..
Guys thanks in advance! nice to meet everyone!
One last thing I could have sworn I have read about pred being GI toxic before but have been looking for lit on it today and cannot find what I found before. Also steroids are known to make infections worse. Not sure if they help or hurt the blood though(looks like they help but am not sure). This is another reason why I think it may be an infection but am not sure. If it does cause GI toxicity, maybe especially when combined with MTX that could be it too or a combination. Thoughts?