Thank you for your reply - I will discuss it more as humira just doesn't seem to touch the joint issues....
I have been treated for my UC since 2010 and am currently taking humira and sulfasalazine. Since then over the past couple years I have suffered from ongoing arthritis primarily in my feet, ankles,...
Thanks for the info - I agree it makes you feel old. I am 55 and not yet retired and often wonder - especially the days I get up and my feet ankles and hips ache- what I will feel like when I get...
Reading your post I saw similarities to where I was. I was originally diagnosed with UC in 2010. I was put on remix aid and prednisone. I finally got relief and my UC flare subsided but I kept having...
Hello - back in 2010 I became a regular visitor to the UC forum as I had been battling repeated flares. I finally got this under control with humira and sulfasalizine but now are suffering repeat...
Thank you - I have never heard of ankylosing spondylitis - all I know is I'm getting a little disillusioned with medical drs. And getting a little frustrated....
I was diagnosed with UC in 2010 and am currently taking humera. I am currently in remission from a flare that started in the beginning of the year. My challenge now seems to bee several aches and...
Oops I hit the submit before I was done. My question is has anyone been given the option to go with remicade vs humira. I was asked which I would rather go back on as I stopped remicade ( bad...
Has anyone been given the option if they wanted to go with remicade vs humira. I was as...
Went to GI today and going to try humera shots. Said I could try doing just 6MP, return to remicade or try the humera shot once every 2 weeks. I can get a pen type shot that I can administer myself...
Thank you - I had not even thought about clinical trials - I will check it out....
Thank you- I'm hoping I can turn things around quickly. I was doing soooo well and didn't appreciate the fact I was living a normal life with just having to deal with a 3 hour infusion once every 8...
Thanks - sounds like good advice, I suppose I felt like I never had to take major meds before and all the time. Seemed like why all of a sudden. Bad judgement on my part. Now I have been offered a...
I had my first significant flare in August of 2010 which landed me in the hospital. Long story short I went on remicade and 6MP. Returned to work after being out for 9 weeks. Things were good with...
Thanks - you are right - stressing doesn't help it becomes a vicious circle....
Yes because remicade lowers your immune system they want you to get an annual TB to ensure you haven't been exposed. I'm just getting frustrated as before 2010 flare I wasn't on any med long term -...
I have been on remicade since 9/2010 after being hospitalized from a flare. This in addition to 6MP kept me free of flares, except my blood levels were screwed up. I wasn't happy with my GI so I...
I was worrying that I was starting to get arthritis. I have been on remicade since last August. I received my last treatment in January and immediately following that treatment I have experienced...
I have also used A&D ointment...
I have been doing fairly well since my flare in august. The only meds I'm on now is Lialda, 6MP and Remicade. I'm soooo tired of taking all the meds and watching my hair come out everytime I wash it....
Sort of like mind over matter. I think I believe in that alot. Look at the difference in the recovery rates of type A vs. type B personalities. I have read that type A personalities tend to recover...
Thanks for the information - Habits are soooooo hard to kick in addition to routines! I used to get up in the morning to get ready for work and pop a can of diet coke and drank it while getting ready...
Thanks for the insight - I do have extra enemas so I will take your advice and you are right bad flares are quickly forgotten. Sometimes it is just hard to learn from the lessons you have been...
I have dealt with proctitis since late 80s and never had a bad flare of UC til august of this year. This flare put me in the hospital and introduced me to new meds. I was out of work for 2 months and...
I had been put on 40 mg of prednisone back in July when my flare really got going. Now my GI has me tapering over the past 3 weeks I went from 30 mg to 20mg to 10 and now just this past Thursday I...
Congratulations Sherry!!!! I'm happy you are feeling good and in remission! I'm close I think - and am also on the 6MP with remicade. I'm trending down quickly on the prednisone from 40. went from 30...
This past week I went to a retna specialist as a result of vision problems I was experiencing. He diagnosed me with pigment epithelial detachment. This makes me very nervous as I notice when I wear...
Just got back from the retina specialist - come to find out the problems I was experiencing is pigment epithilial detachment. I will go in 2 weeks for lazer treatment. When I asked what caused it he...
Sorry to hear you are having trouble. I recently posted a item regarding my vision. I too am having trouble with my right eye and am seeing a retna specialist tomorrow. I did see my eye dr as my...
Thanks I think I will call. When I last saw my GI (1 week ago) I had forgotten to ask him directly. My appt was probably one of the worst appts I have ever had. The office was having computer...
did you have any symptoms that went with your elevated enzymes or was the only way you knew was through your blood test?...
When my GI prescribed 6MP for me back in Sept he said that it was important to check/monitor blood levels. It has been a month and I still have not had my blood checked. Was wondering how often do...
thanks that is good to know. I really don't want to get the flu and have always gotten the shot. This will be the first season/year that I will be on the auto immune suppressor. Our work provides the...
Now that the flu season will be coming soon - was wondering if getting the flu shot was a good or bad idea. I think I read something about not getting the live virus shot if taking auto immune...
Thankyou for your input! Yes I am from the US. The information you shared is rather bothersome - If IBD patients can be susceptible to vision/retina issues and it is important to followup why don't...
It is interesting that you mention that you started having problems after starting the leukemic meds. I have read the 6MP is used to treat childhood leukemia and wonder if there is a tie. I noticed...
I just got back from my eye doctor because of some vision disturbances I was getting in my right eye. In actuality as I was waiting I noticed I had a small area (lower right peripherial)of my vision...
You mentioned that your last flare was after you had your baby. Do you think your flares were hormonal related. I am 50 and just had my first real bad flare and my GI asked if I had started...
Thanks for the quick response. No my eyes don't hurt - I have been having a few headaches - but I think that is a side effect too. I really want to get off of this prednisone stuff - it works but I...
I have noticed lately that I keep getting like floater type vision disturbances off and on. Was wondering if this could possibly be one of the side effects to the meds (prednisone, remicade, 6MP...)...
I started 6MP about 1.5 weeks ago to supplement remicade. My GI felt I was being steroid dependent and the remicade wasn't working entirely by itself. I really have not had any problems since...
Thanks for the insight. I'm getting tired of hearing I need to try something different because it isn't being fully effective. A little of my frustration with having to stare at soooo many...
I have read where a number of people do not want to have to use 6MP, and only as a last resort. I started 6MP about 1.5 weeks ago to boost the remicade because my GI felt I was steroid dependent and...
Was the combination of the pain, blood loss and frequency - which contributes to dehydration. Combined with the fact I had been prescribed several meds weeks prior and no relief. Had tried the...
I have a question about candida - is that the same thing that causes oral thrush. I see you are nystatin - so am I but as a result of having come down with oral thrush. I got this right after getting...
I also experienced the nausea and close to vomiting. This occurred during my worst flare and just prior to being admitted to the hospital. I was put on remicade and 6MP and have improved a great...
I have been on oral prednisone and have noticed that my taste is off. It is almost like a funky pastey taste - only bitter immediately after taking the prednisone. I have wondered if it was the...
I was having same trouble with the bleeding. The steroids (prednisone) seemed to help but the Lialda alone didn't. They have put me on Remicade and 6MP as my GI feels I am mostly steroid dependent...
This is a nice change. We all try to get our UC under control so we can do and enjoy just the things we are speaking of here! I have a horse of which I enjoy riding and grooming. I also have 3 dogs...
Thank you for the input. It helps to hear when others experience the same thing to changes in meds. This is a whole new ball park for me and I am learning a tremendous amount from everyone here at...