Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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Wondering about how long people waited switching between other medications and Entyvio? I had my last Stelara dose on May 21st and seeing my GI today. I believe the plan is going to be Entyvio.
 
I think I'd stick with the Entyvio personally, Joe. It can take up to a year to take effect and you have already invested this much time in it. I agree that if you GI thought Cimzia was a good option they would have already tried that.
 
Thank you lgpcarter and jtwist, i appreciate the response
Yea that would make sense i guess, i will discuss with my doctor on thursday this week... Possibly add on a methotrexate
 
Hi everyone. Sending this message from the hospital. All testing is negative and it appears my rlq and rectal pain are adverse reactions to meds. I'm on cld, fluids, pain meds & steroids. I'm hoping to feel better tomorrow but I feel miserable. Supposed to fly home to visit family &a friends for 20th high school reunion. I hate this disease.
 
Don't even know what to say except that I hope tomorrow is a better day. My heart goes out to you and I understand what a horror show this disease is and how it disrupts our lives completely. Sending positive thoughts
 
Waiting for my 4th Entyvio treatment, hopefully it will finally start working. I am on 40 mg of Prednisone now and having really bad bleeding. The worst bleeding I have ever had in 17 years. Has anyone else had blood clots when they wipe from a BM? This is a new symptom for me.
 
Had my sixth infusion Monday. Have no control over my bowels! It's awful. I hope tomorrow is better. I want to cry. And yes I do have what looks like clots. Rectal surgeon says it's skin from internal hemerroids that passes with BM. Hope everyone feels good today!!
 
Doglover,
Have you had a gastric motility study done? If you are struggling with severe nausea ask about getting this test done people with crohns are at risk for messed up GI motility or something called gastroparesis and chronic nausea is the main symptom.
 
I have never heard of that, but it is worth talking to my gastro team about. The initially found a non functioning gall bladder, which was removed, and did help with the symptoms. Now they are back.
 
Please help! I just had my second loading dose on Wednesday and I've gradually been getting symptoms of a terrible head cold. My sore throat and nasal congestion are the worst along with a pounding headache. It happened with the first infusion although not as severe. Since it's Saturday, I can't call the doctor. Has anyone been able to just use something OTC that worked? This is terrible. Should I expect this after every infusion?
 
lgpcarter…no my son hasn't tried Stelara...that was the next med planned…but we have opted for Anti Map Therapy instead.
 
Hi peluchde! I had a horrific sinus infection after my 4th infusion . Lasted weeks finally had to take antibiotics. The pain in my sinuses was the worst I have ever experienced. Thankfully it cleared up. Hope you find relief. Wishing everyone a healthy day.
 
Getting my first infusion next week of Entyvio, pretty excited as this has been a difficult second option for me to get used to since my insurance kept denying Stelara due to diagnosis of Crohn's. I have to admit after being on Remicade for 6 years and ending it with drug induced Lupus and horrible medication reactions, I'm not looking forward to starting another type of infusion. But, if this medication will help me get under some control with my fistulas and Crohn's flare ups.....then it will be well worth it. Any advice from others taking Entyvio would be greatly appreciated on what to watch out for or possible side effects. Thanks ;-))
 
I had my lst infusion of Entyvio last Monday. I had no reaction to the infusion but starting Friday night for a couple of days now the diarrhea is a little worse. I am also on Imuran. I am having to take Imodium to slow it down a bit. I won't have my next infusion until the 29th. I have heard that Entyvio does take awhile before you see it helping. Good luck Mindy82!
 
2nd infusion went well, No noticeable improvement yet. I had a bit of sinus congestion and sneezing the next day only. Also a mild headache for 2 days after. I'm OK now. My Doc told me that the most common side effect involved the sinuses. I thought the head ache may have been a coincidence the first time, but now think it may be related. Or maybe it was the red wine. :0) It seems I can tolerate this stuff. As long as it works, it would be worth it. Luckily for me, I don't seem to have as bad of a reaction as Pel & Mama. Wishing you both well. Next infusion. 1 month. Jury still out on Entyvio. Keep you posted.
Sure nice to see the support here on this forum.
Good health to all.
Gary
 
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Well I got out of hospital and went on vacation. Still having pain in my right side and rectal pain, but it's better. They think the 6 MP may have caused some of the symptoms. In going to continue the Entyvio for now.
 
How many entyvio infusions have you had ey218? I have no control over my bowels with 6mp and a week into my sixth infusion. Getting really scared now, lost 7 pounds in two weeks
 
I've had 3 infusions. The crazy thing is all my symptoms have been Peri-anal until now. I have several fistula. The pain in the rlq is new and what scares me.
 
I have perianal issues as my main issues as well for the past 4 years. Before then it was all small bowel. Interesting. My lrq pain has increased after this past infusion. Going to call MD today. What is yours saying?
 
He hopes it is the 6MP rather than Entyvio. We stopped 6MP 2 weeks ago. I follow up with him tomorrow. I see some people have had dizziness, etc. I actually lost consciousness in the shower the other day. That was very scary.
 
Oh my goodness! Glad you didn't fall! I am waiting for tests results to see if C diff (again) ugh. Now added pred 40 mg to the mix. Awesome. Best to everyone
 
This may sound weird, but I like being on prednisone. Show's how everyone's different. It gives me much needed energy. I know pred it's not good long term. When I've been on it, I take it in the morning. Otherwise I cant sleep at night.
BTW... No more headache's or nasal congestion for now.
G
 
Just saw GI. We're going to reduce Pred to 30 mg for a week, then 20, then 10. He says Pred masks so much, that's what concerns him. However, my CT is clean so I should be okay.
 
Hope you can taper off the prednisone without issues! Glad your scan was clean. So frustrating when labs and scans are "perfect " and you feel like garbage. Crazy
 
Hello I am new to this forum...I am 23 and I've had UC basically my whole life. Recently just got out of the hospital last weekend due to a severe flair up. Haven't had really any medications to work for me recently. I was on Lialda most my life and one day over night it just stopped working. I will have my first Entyvio infusion Tuesday I am really hoping this works out. I know it takes some time to kick in I just hope it works.
Still taking Lialda...Azathioprine...and Prednisone and its barley working for me right now.
totally sucks :(
 
Welcome to the group. I just joined this month also. I had my first infusion of Entyvio a week and half ago. Second one will be on the 29th. I have heard it could be about 6 weeks before we can tell if it works for us. I am also just on Imuran (was taking Humira but it stopped working after about 2-3 years). Good luck to you and let's hope this will be our miracle drug.
 
Grandma McB said:
Welcome to the group. I just joined this month also. I had my first infusion of Entyvio a week and half ago. Second one will be on the 29th. I have heard it could be about 6 weeks before we can tell if it works for us. I am also just on Imuran (was taking Humira but it stopped working after about 2-3 years). Good luck to you and let's hope this will be our miracle drug.
Click to expand...

We can only hope! Thats what Ive been hearing too about 6 weeks. Hope it works for you as well
 
Just got notice that my insurance company has denied my hospitalization. I guess negative testing trumps inability to eat, get out of bed and excruciating pain. What a disease!
 
Insurance companies suck! For my third bowel resection I went "out of network" because my GI wanted me to go to the best at MT. Saini and literally the day before I got threatening phone calls telling me all of my out of pocket expenses,etc. trying to scare me into changing my mind. Like I wanted to have this surgery. Insane!! Sending my best !
 
We're talking about a second opinion at Mt. Sinai. I have no out of network benefits, though. It's just another stressor.
 
I'm new to the Forum and to the group... I've been dealing with Crohn's for 10 years now... it's so frustrating.... :S

Anyway, I just wanted to share with you that I've had 4 Entyvio infusions and unfortunately it's not working for me.
I was on 6MP and Entocort combo that was working.... I could say Crohn's was in remission.... But because I was on Entocort for 3 years doctor said we had to stop and 6MP alone couldn't keep me in remission.

We switched my treatment for Entyvio but besides joint pain I developed a Fistula and Abscess... just had two procedures done, have Setons and will have to start a new treatment this week.

From my experience, make sure you have a parallel treatment while you try Entyvio. My doctor didn't give me anything, no imunosupressor, etc... and of course I had a flare up.

I'm going to a new doctor at Mt Sinai now and he also mentioned that Entyvio worked really well for IBD but not Crohn's specially with fistula.

Good luck to you all!
 
Welcome Karina.
Don't get discouraged. Maybe it takes longer for you.
I was told by my doc & also read on some post's that it can take up to a year to see results. I've had 2 infusions and gotta say that lately things have been more solid for me. Catch my drift? I hope it's kicking in. I agree with you that most on entyvio seem to also be on imunosupressor's (including me, mtx.) I guess there could be a reason why a Doc would NOT add the immuno's, but it's certainly something worth asking about.

Welcome Mitsuevor's.
What is your avitar? looks like a harley gas tank? Way cool!
Hope entyvio works for you.
G
 
Went to doctor today, staying on pred 40 for two more weeks, then tapering. Will try one more entyvio (#7) before throwing in the towel . It was working then just completely went back to square one! Having another MR enterography too. So not in the mood. Want to cry but have a husband and two kids that need me! Thank goodness! Wishing a good evening to all!
 
Sorry to hear, Mamabird. Let us know how MR enterography goes. Mine is scheduled for next week.
 
Best to u as well! Thanks for the support, just feeling so crazy right now b/w the prednisone and having this "bump" in the road!
 
KarinaP said:
I'm new to the Forum and to the group... I've been dealing with Crohn's for 10 years now... it's so frustrating.... :S

Anyway, I just wanted to share with you that I've had 4 Entyvio infusions and unfortunately it's not working for me.
I was on 6MP and Entocort combo that was working.... I could say Crohn's was in remission.... But because I was on Entocort for 3 years doctor said we had to stop and 6MP alone couldn't keep me in remission.

We switched my treatment for Entyvio but besides joint pain I developed a Fistula and Abscess... just had two procedures done, have Setons and will have to start a new treatment this week.

From my experience, make sure you have a parallel treatment while you try Entyvio. My doctor didn't give me anything, no imunosupressor, etc... and of course I had a flare up.

I'm going to a new doctor at Mt Sinai now and he also mentioned that Entyvio worked really well for IBD but not Crohn's specially with fistula.

Good luck to you all!
Click to expand...

My wife is on her 5th infusion, and is dealing with fistulas as well. Currently has a seton in place, but will have a surgery to repair the fistula, and the colorectal surgeon said he wants to perform a loop ileostomy while the fistulas heal, was this something similar you went through? Another invasive surgery just doesn't seem like the best option right now, especially since we think the entyvio isn't really working.
 
CD mom said:
Anybody on MTX and Entyvio?
Thanks
Click to expand...

yup!
Been on mtx seems like forever.
With Humira, stelara, prednisone, by itself and now with entyvio.
I think it's working? Maybe too early to say for sure.
I'm between 2 & 3rd infusion.
G
 
Did everything else they threw at you fail? Entyvio hasn't stopped the inflammatory process. Now massive surgery. So now adding MTX.
What's after Entyvio? Nothing?
 
I am just starting Entyvio and want to give it the best shot I can, so I decided to add the MTX. I have tried just about everything else - see my signature for all of them!

I also like to think one step ahead, and my GI knows that, so he did let me know that he has applied for a couple clinical trials that could be options for me if this doesn't work. He didn't say what they were beyond that.

I haven't tried Cimzia because it is not available in Canada, but other than that, pretty much done it all!
 
I had no luck with any of the orals, Remicade did not give me long lasting relief. Good luck with Entyvio, it does take longer to kick in, but when it does it has been pretty great.
 
Is anyone here able to say this stuff is great? If anything, I'm worse after three. They took me off of 6MP because I ended up in the hospital. I'm back on Pred and not tapering yet because I'm still having pain in the rlq and rectum. Of course every scan I do is clean. I'm just wondering if anyone here is a true believer in this stuff?
 
lgpcarter said:
I am just starting Entyvio and want to give it the best shot I can, so I decided to add the MTX. I have tried just about everything else - see my signature for all of them!

I also like to think one step ahead, and my GI knows that, so he did let me know that he has applied for a couple clinical trials that could be options for me if this doesn't work. He didn't say what they were beyond that.

I haven't tried Cimzia because it is not available in Canada, but other than that, pretty much done it all!
Click to expand...


Yes, my son has been on Remicade, Humira, Cimzia, 6mp, Leukine.
Followed at Mayo and is participating in 2 clinical trials, but needs surgery now. Will likely participate in a type of stem cell trial for the rectal fissures.
 
Hello, had my first dose of vedolizumab yesterday for Crohn's Disease, have already been on Infliximab and Humira. Had read that vedo takes a while to work but already feeling better today with much less pain. Hope it stays that way and isn't just coincidence!
 
I will say that Entyvio is good stuff, less time to infuse than Remicade, a bit longer to kick in, and not nearly the side effects.
 
CD mom said:
Did everything else they threw at you fail? Entyvio hasn't stopped the inflammatory process. Now massive surgery. So now adding MTX.
What's after Entyvio? Nothing?
Click to expand...

Sorry to hear of your up coming sugery. I've had 4 resections. Not fun. I hate the word fail, but Ya, I guess nothing else has worked as it should.
I'm feeling really good right now. I hope the Entyvio's kicking in. Wish it was working for you. Hopefully in conjunction with mtx will help.
Whats after entyvio you ask? There always something.
Never give up, never surrender. W. Churchill.
G
 
Just a quick update on my Entyvio experience so far. When I began Entyvio, I was in a flare with my UC for a year and a half. I was bleeding all the time, passing blood clots, in constant pain and anemic. I had been on Remicade but it became ineffective. My doctor switched me to Entyvio. I have had 3 infusions so far. I am 7 weeks out from my last infusion. I am not combining any other meds with Entyvio. I am solely on Entyvio. I am completely in remission. I was so afraid to start this med but am so grateful that my doctor insisted. It was this or surgery. From what I've read, my response seems atypical. I just want to encourage those of you who are giving it a try to be hopeful. I've never responded so well to any other med. I hope others find the same relief.
 
That is such great news! And very encouraging! I do feel that the entyvio has been more successful in those with UC as apposed to CD. I have started my pred taper and still on 6mp. Going to have my 7 th entyvio (maybe last) on the 31st. Pending to see what MRE shows on Tuesday . Of course I am doing better on this short course of steroids but that is not a long term solution! Wishing all the best!!!
 
Mrsmanley,
Thanks for the update. My daughter is still struggling but definitely in a better place then when she started the entyvio and methotrexate combo. Her next infusion is in two weeks. It will be number five. Really hoping this will be her turning point!
 
CD mom said:
Yes, my son has been on Remicade, Humira, Cimzia, 6mp, Leukine.
Followed at Mayo and is participating in 2 clinical trials, but needs surgery now. Will likely participate in a type of stem cell trial for the rectal fissures.
Click to expand...

Perhaps Stelara would be an option. Sorry to hear about the surgery? What type?
 
My son received his first Entyvio infusion last week. The infusion took one hour. He was given Claritin preventively. My son is seventeen and we have not seen remission in 2 1/2 years since diagnosis. We have seen reduction in flares but no long term remission. He hasn't had a formed BM in years and although his weight has stabilized, he should be at least fifteen pounds heavier. After being on remicade for a year, double dose, every four weeks. His scope still showed significant inflammation. He never developed antibodies, it's just that the drug worked but not as good as it should, after reaching peak levels. It's just that everyone is so different. I pray that this works and my son can have a semi-normal college experience. Please share all good and bad. This is a relatively new drug with minimal reviews available.
 
My husband was diagnosed with severe Crohn's last August. He was in the hospital just before that with a significant bowel obstruction and fistula. He also has Secondary Progressive Multiple Sclerosis (diagnosed in 2000). He has been on Entyvio since last October. He hasn't been on any MS drugs since last August as well. He has done well with the Entyvio infusions. He had a CT scan of his abdomen this June and had "significant improvement" compared to the one taken last August. He never has diarrhea or stomach pain, and he goes to the bathroom daily with formed stool.

We have to wonder if his improvement is due to the drug or the fact that he has been on The Wahl's Protocol Diet (no gluten, no dairy, no sugar, no soy, etc,) since November??? Or is it a combination of both??? What's even more interesting is that his MS hasn't been progressing either. He is now able to go 3miles on a stationary bike and hasn't been able to do that in years. So for now he will continue with what's currently working for his health and keep our fingers crossed.
 
Hello,

My son had to go off Entyvio due to side effects just recently… was on them every month….just wondering if anyone else had to stop and if so did you just stop the infusions or taper off them and if so did you have any problems?
 
Hi! After six infusions, had to add pred and 6mp. Everything just started to go bad, D,N etc, had MREnterography today. See what's going on. I was feeling better after the fourth infusion and side effects were becoming tolerable ( gas pain, joint pain). Sending my best to everyone!
 
I recently started Entyvio about 5-6 weeks ago. This has been my first infusion type medication I have ever been on. Haven't gone for a scope yet to check on the inflammation, but so far results seem to be decent. Blood levels slowly rising and BM's are becoming less frequent. Unfortunately, I have gotten this terrible cough and gag sensation (after so much coughing) that started around the same time as my infusions as well as becoming more tired/out of energy. I will be continuing the infusions for now, but those side effects have not gotten better.

I was wondering if anyone else has experienced this coughing? I've tried anti-histamines, inhalers, prednisone, cough syrup, air purifiers, nasal spray, and nothing seems to be working to calm it or get rid of it.
 
CD mom said:
Did everything else they threw at you fail? Entyvio hasn't stopped the inflammatory process. Now massive surgery. So now adding MTX.
What's after Entyvio? Nothing?
Click to expand...
I'm just about to start entyvio too. It is so stressful this whole process hoping things will work or hoping they will last and they don't. Meanwhile taking prednisone is just plain brutal. My understanding is that is the last drug currently on the market FDA approved. They have something new in the works but still in trials. Good luck to you.
 
MrsManley said:
Just a quick update on my Entyvio experience so far. When I began Entyvio, I was in a flare with my UC for a year and a half. I was bleeding all the time, passing blood clots, in constant pain and anemic. I had been on Remicade but it became ineffective. My doctor switched me to Entyvio. I have had 3 infusions so far. I am 7 weeks out from my last infusion. I am not combining any other meds with Entyvio. I am solely on Entyvio. I am completely in remission. I was so afraid to start this med but am so grateful that my doctor insisted. It was this or surgery. From what I've read, my response seems atypical. I just want to encourage those of you who are giving it a try to be hopeful. I've never responded so well to any other med. I hope others find the same relief.
Click to expand...

Thanks for sharing. It's really important to hear a positive story among so much suffering. Please keep sharing your experience with us.
 
gardeniagirl said:
Hello,

My son had to go off Entyvio due to side effects just recently… was on them every month….just wondering if anyone else had to stop and if so did you just stop the infusions or taper off them and if so did you have any problems?
Click to expand...

Hi there, curious about what side effects?
 
lgpcarter said:
Perhaps Stelara would be an option. Sorry to hear about the surgery? What type?
Click to expand...
Unfortunately Stelara was ruled out by the Drs. Felt that since similar meds haven't worked, not wise to waste time trying another similar med.
Drs at University of Pennsylvania Medical Center offered no option other than complete removal of colon, rectum and small intestine resection in several areas. Sought 2nd and 3rd opinions. Concurred with UPMC.
So we once again turned to Mayo in Rochester. Have been followed by them for 10 years. They said it was very possible to remove only a portion of colon, leave rectum, put on clinical trial for drug for rectal fissures, treat small intestine strictures with several strictureplastys.
Surgery went even better than expected. Temporary ileostomy in place. Much hope for remission from adding MTX to the Entyvio.
 
Had my fourth infusion a month ago. My GI doc says it could take as long as 14 weeks to see evidence Entyvio is working. No substantive improvement so far, but the nagging asthmatic-like cough is very tiring and annoying to all. Other side effects are minimal.
 
Menard said:
Had my fourth infusion a month ago. My GI doc says it could take as long as 14 weeks to see evidence Entyvio is working. No substantive improvement so far, but the nagging asthmatic-like cough is very tiring and annoying to all. Other side effects are minimal.
Click to expand...

14 weeks.....saints perserve me. After one week, I feel very poorly and to think it might be months before there is improvement. Woe and lamentation.
 
Finished my fourth Entivio infusion. Have seen improvements: have a bowel obstruction where I was feeling obstructed every day, now it has been a month without it. Also have a bad case of Perianal Crohns, now the constant itching has been reduced 50% and less pain.

At this point I will give Entivio a B grade, when I was in Humira for the first two years it was dramatically good, took me into remission. I gave Humira an A+ grade. With Entivio I am somewhat cautious and will have to have at least 3 more infusions before I can conclusively say that is working well. Will keep you posted.
 
Severe illness a la gut pain, fatigue, high fever and chills, and inability to move out bed with great effort.

Doc has stopped further infusions, and blood work has been ordered.
 
First time on here, amazed at all the good advise. Ive had active Crohn's for 5 straight years now, no stopping it, failed everything, remicade, humira, Cimzia, stellera, i think theres another one too, failed them all. Mayo clinic in rochester has slowed it down bit we cant stop it, today i had mt first dose of Entyvio. Had it at 2pm today, drove the 4 hrs back home and about 7pm tonight i got severely dizzy and continue to feel that way, they said i may get a little dizzy but i feel like ive been drinking for 20 straight hrs!!! Other than that i feel just fine, is this normal???
 
I cannot say I have had that type of reaction. My side effects did not kick in until 2 days later. Judging what is normal with anew drug is a tricky business from what I have read. I hope Entyvio works for you in the end, no pun intended.:ybiggrin:
 
I just got admitted back in the hospital, i got almost every side affect from the entyvio infusion within 12 hrs, im meeting with the surgeon tomorrow morning, ive failed every treatment known, i think its time to take the colon out
 
I had 4 infusions of Entyvio and no side effects nor benefits from it :( sadly it didn't work for me. I say sadly because from all drugs Entyvio is supposed to be the one with less side effects....
I did take Florastor (got the branded one, not generic) during my treatment actually I still do take it twice a day... maybe that will help.
Good luck to you all!
 
jtwist01 said:
My wife is on her 5th infusion, and is dealing with fistulas as well. Currently has a seton in place, but will have a surgery to repair the fistula, and the colorectal surgeon said he wants to perform a loop ileostomy while the fistulas heal, was this something similar you went through? Another invasive surgery just doesn't seem like the best option right now, especially since we think the entyvio isn't really working.
Click to expand...

Hey! It sounds like she's going thru the same thing. After the doctor told me about it we decided to see another surgeon and he told me that maybe I would still need that procedure but he would like to try medication first. I had my first Remicade infusion yesterday and I feel a lot better already.

Just another piece of info that may help you.... when I had Setons placed it didn't do much but I was only on Cipro. When the surgeon saw that the whole thing wasn't working, he added Flagyl to my drug list and after two days I had a big relieve. I have some side effects from Flagyl but nothing compared to the pain I had... and it did hold the inflammation until now so I could start the new treatment.

I would go for a second opinion, maybe a Surgeon that deals with Crohn's patients. The second surgeon explained that because I have Crohn's the tissue area is damaged and there isn't much they could do so he would rather try medication first. Plus, nothing could guarantee that once the colon was reattached the fistula wouldn't come back :S

Good luck to your wife and if she wants to talk about it she is welcome to send me a message.
 
mbradbrad….sorry Im just replying…haven't been on lately…once they upped my sons Entyvio Infusions to every 4 weeks…he started getting Urinary Tract Infections each month…so since he wasn't doing well on the Entyvio to begin with…we stopped it.

We were told that Entyvio works better for UC than Crohns.
 
Something else regarding side effects from Entyvio…my son had severe back pain shortly after starting Entyvio and had to be put on pain meds just to function.

Remember though…everyone is different…what may not work for one person may work great for another.

For any of you that have tried everything… and nothing seems to be working...look into Anti Map Therapy. Many people seem to be in remission with it…my son just started it…so we will see how it goes.

Blessings and good health to all<3
 
Yes! Good thoughts to all of us! Down to 20mg of pred, getting 7th infusion of entyvio on 31st and have added 6mp about a month ago. Starting to feel like a human this week, actually sleeping more than 4hours. D has gotten better, still have perianal problems with leakage, but definitely an improvement!!! Hope that one day I will not be afraid to pass gas and leak! Anyone else out there with that fear? It's so very stressful on me and my my family life. The low fodmap diet has helped, you just have to be always making food ahead of time!!
 
Cipro and Flagyl work wonders for my fistulas and perianal disease. Have you been on them, mamabird? Glad you are starting to feel some benefit from the drug.
 
Thanks Igpcarter! Have been on those as well but about 20 years ago! Going to give this combo a try for now. Happy to hear you have had relief from your symptoms!
 
You could see about adding them to the current regimen if you don't get enough relief from 6MP and Entyvio alone, or as a bridge. As you see form my signature, I am on quite the cocktail at the moment!
 
I hear you Mamabird.
I hate it when one slips past the goalie!
Oh well, Sh*t happens.

On a happier note... I'm Feeling good. 3rd infusion went well. No headache or nasal conjestion this time.
Maybe this stuff is actually working for me?
G
 
I just joined this forum,I'm going to be 42,and I've had Crhons going on 26 years,and I got lucky the surgeon I had,that took my appendix out,that was my diagnosis back then,but when they were ready to close me up,the surgeon noticed the Crhons and took 18 inches,the 1st of 3 operations over the years!

I'll go over all my meds that I have been on/or currently on later!

I have a REAL important question, I go for my 3rd infusion of Entyvio tomorrow, but when I was on Cimzia,it actually helped my back better than my Crhons!

With that being said,I went against what I was told,because I could hardly walk and the pain was horrible, but on July 29th,I administered extra Cimzia I had! I know,I'm not supposed to,but,over the years of dealing with this disease, I've really been through alot,so my depression is so bad,I really didn't care,starting to lose hope!

With that being said,just wondering if anybody else has did the same,and what happen,because now I'm experiencing something different, painful,but only when I squat or move a certain way or try and feel around for it,ohhh sorry,it feels like an oblong bubble,right above my active Crhons site!

Any info will be helpful,like I said I'm going for my 3rd Entyvio infusion tomorrow!
 
Welcome RGF.
I too was originally diagnosed with appendicitice a long time ago. Turned out to be crohns. No experience with cimza, but that oblong buldge you discribe happened to me before my last surgery. I would ask your doc if your condition should be knocked down with Prednisone. I think these new drugs can only get a fair shake if the condition is not in a flared state. Seems allot of us are taking immuno's with Entyvio too. I'm no expert. Ask yours. Hope you have a good GI specialist and a good day.
 

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Recent publications and findings of interest
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Patricia56
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