Entyvio (Vedolizumab) Support Group

[doglover1]

Thanks for all the great input. I did go through the loading doses with Entyvio. I am hoping that since I had to go off Entyvio I won't have to reload. It was good information that it can take at least 6 infusions to work. I am also taking Lialda, my doctor is not a fan of Humira, when I was going through Remi there were several Humaira patients whose base complaint was the pain that they associated with self injection. Prednisone is not my friend, but am on budesone, which takes times to work.

I will have to check on whether my doctor meant IBS or IBD, it would make more sense if they meant IBS since I have IBD. My Crohn's is in my lower colon and they have ruled out UC, but because of its location they tend to treat it like UC.

 

[mamabird]

Hi! It has been almost two weeks since entyvio infusion #4 and I am finally today hungry and not nauseous or with a head ache. Also only 3 BM today and no uncontrollable gas pain! Amazing! It's so hard to see the light when it's been 26 years of surgeries, failed meds and pain and sadness. Sending positive thoughts to everyone!

 

[kimmidwife]

Mamabird,
Very glad to hear! Hope it just continues to get better!!!!

 

[jtwist01]

Ok, so just an update, my wife is on her 2nd infusion, (3rd scheduled next week) and she is having horrible nausea, extreme fatigue (stuck in bed pretty much all day), losing more hair, numbness in hands, spasms, cramping, bloating, wondering if this is the drug for her, trying to be patient.

Kathy, I am from Austin as well, FYI there is a crohn's CCFA support group here in Austin if your interested, me & my wife go occasionally.

Wife is having an endoscopy tomorrow, she's certain that there's 'something' going on in her upper GI tract.

Well wishes to everyone & their recovery!

 

[mamabird]

@jtwist01, so sorry your wife is suffering. I get horrible nausea, cramping, D, and complete body aches for about two weeks after infusion. It's like I actually feel like I am going backwards and hard to see a positive outcome. I truly hope she can get through these tough weeks and feel better.

 

[Fernando1]

I had several infusions, no side effects at all. No perceptible positive change either.

 

[BlueSky]

Can anyone provide a phonetic pronunciation for Vedolizumab? Its just not rolling off my tongue.

 

[Muley_Madness]

Hi There,

I will taking my 3rd dose Entyvio this Friday, with no side effects to this medicine yet. This medicine and steroids is my last hope before another surgery if i don't end up in the er again with severe pains. But so far this new medicine has shown a great impact on my bad spots which wonderful.

 

[jtwist01]

Muley,

Best of luck to you, wishing you the best of health, hope this drug works for you! Wife had the endoscopy yesterday and the doc wasn't able to find anything all the way to the duodenum. Now she's scheduled to get an enterography MRI on the small bowel to see if her Crohn's is attacking there. Prayers to all those suffering.

-John

 

[doglover1]

Just checked with my doctors office and they will talk and it over and get back with me ( they are suggesting an (anti spasmatic?)

Jtwist, where and when do the Austin meetings occur?

 

[jtwist01]

The meetings are at Seton Northwest Hospital off of Hwy 183. Just goto the CCFA website and there is the option to search for a local chapter. Mark is the guy that is in charge of the meetups, cool guy, also suffers from Crohn's. My wife has quite a few spasms throughout the day, she takes Bentyl twice a day (although it makes you a bit groggy).

 

[sehart717]

Does anyone get entyvio and is on Tricare Prime?

 

[tricia_c]

Can anyone provide a phonetic pronunciation for Vedolizumab? Its just not rolling off my tongue.

vay dough LIZ you mab

 

[jtwist01]

Sehart717, Entyvio is approved for use through Tricare Prime, with prior authorization of course, it says on their website to contact them. Usually most insurances will want you to have tried other options before Entyvio, at least that's how mine worked. I'm a little familiar with Tricare (used to be in the military). Hope you get approved!

 

[doglover1]

I spoke with my doctor, he did not recommend changing my treatment plan in any way until I am able to get back on Entyvio. Right now I only have steroids and Lialda, neither of which are helping much. I really appreciate all the great support I've received here

 

[mamabird]

Hello everyone. Unfortunately a set back for me as my 5 days of feeling pretty good went to mild obstruction in the rectal area. Two days of so much pain that fighting hard for my kids was the only thing getting me to recovery today. It's so very depressing and anxious to have a complete turn around from no where. Anyway, thankfully better today and hoping all of you are managing to have a good day. Thanks for listening

 

[jtwist01]

Hang in there mamabird, there are better days ahead, just keep telling yourself that! Just know that you are not alone!I'm still optimistic about this drug, my wife actually had a decent day yesterday and not much pain. The nausea has subsided a bit, but still some cramping/bloating. It's also hard because she's weaning off of prednisone right now (currently at 15mg, was at 30 initially, was all the way up to 60 at one point).

 

[rosewrite]

how long to stick with it and antibodies

Hi All. I am new to the Forum and very excited to connect with everyone and learn more. I have a few questions:
1. I have had four infusions, with no noticeable improvement. My doctor is now recommending I stick it out for two more infusions over the next four months, just to be 100% sure it is not working. Is anyone else getting a similar recommendation? I had originally been told that if it didn't work by the fourth infusion, it was not going to work.
2. I have heard that Methotrexate might help prevent the build up of antibodies to Entyvio. Does Entyvio trigger the development of antibodies in the same way that Humira and Remicade do? If so, would something like Methotrexate as a helper drug help prevent that?
Thanks so much and wishing everyone good health and comfort. I have Crohn's by the way, not colitis.

 

[Robrich]

Rose write try the MTX INJ. After 3inf the Entyvio wasn't doing much we added MTX and saw steady improvement after a month.
It's not just the antibody prevention but it augments the immune suppression from another angle.

 

[rosewrite]

Thank you Robrich. Makes me wonder if MTX on its own might do the trick (versus with the Entyvio). I saw that you had very long term success with remicade. That's encouraging as I have not tried that yet. I went straight to Entyvio for a variety of other health issues, but remicade is still an option. I also se that you have tried SCD, paleo and bone broths, all of which interest me too. What results did you have with that? I would love to know. Thanks again for responding.

 

[kimmidwife]

My daughter is having horrible pain. Has anyone else had worsening pain with entyvio?
Her doctor thinks she has IBS as well causing this pain but she has never had this amount of pain before this.

 

[Memmy29]

Going in for my first infusion of this pregnancy and I'm terrified. I'll report back. Wish there were others that could give me some positive stories but I haven't found any pregnant people on it. I'll report back...

 

[kimmidwife]

Memmy,
Fingers crossed for it all to go well!

 

[mamabird]

Kimmidwife I am so sorry your daughter is still suffering. I am finally on the improvement side but still have horrible gas pain and rectal pain and D.
Memmy29, you are so brave!
Sending positive thoughts to you both!!!

 

[rosewrite]

I have had four infusions and I am experiencing terrible rectal pain, swelling and bleeding. I haven't had these symptoms before Entyvio. I wonder if this drug causes that problem...hmmm....

 

[mamabird]

Rosewrite, isn't it awful! Sometimes I can barely sit. I have been using lidocaine jelly but doesn't last very long. Do you have leakage too. Very embarrassing and self limiting activity wise. Ugh!

 

[CD mom]

My son started Entyvio after failures with Remicade, surgery, Humira, Cimzia, methotrexate, 6mp and everything else that was tried at Mayo. Diagnosed at age 7 and he is now 24. Never really has experienced remission. His experience with entiviyo has been that he got worse before he finally experienced some healing of deep large colon ulcerations. While the pain and constant diarrhea continue, a colectomy is now off the table for the time being. He is now suffering from PTSD. His GI doctor said this is something that has become found in CD patients, especially those that were diagnosed as children with refractory CD, and are now adults.

 

[kimmidwife]

CD MOM,
I heard about some other people suffering with PTSD also from this. I am sorry to hear. Glad he is finally doing better!

 

[CD mom]

Thanks. He begun the long journey of applying for disability. For the last 3 years he has had to quit 5 partime jobs due to frequent hospitalizations and constant flaring. He has also had to discontinue his college education 4 times. He still suffers from pain and diarrhea. He remains on iron infusions and is extremely underweight, extremely fatigued, and has multiple small intestinal strictures. But we are thankful Entiviyo has healed his large colon. Surgery for his perianal fistulas is scheduled for next month.

 

[kimmidwife]

CD mom,
We are praying for the entyvio to work I am so glad it has helped him!

 

[mamabird]

CD mom, thinking of your son And hoping he heals from his surgery. I have suffered with crohns in the perianal region for about 12 out of the 26 years with this horrible disease and the pain is excruciating at times. Today is not a good day for me and I hate to hear of others suffering as well . Best to you and your son.

 

[jtwist01]

Thanks. He begun the long journey of applying for disability. For the last 3 years he has had to quit 5 partime jobs due to frequent hospitalizations and constant flaring. He has also had to discontinue his college education 4 times. He still suffers from pain and diarrhea. He remains on iron infusions and is extremely underweight, extremely fatigued, and has multiple small intestinal strictures. But we are thankful Entiviyo has healed his large colon. Surgery for his perianal fistulas is scheduled for next month.

Took my wife 2 tries to get approved for disability, but it is possible. Just keep all medical records! I think a diagnosis of PTSD for anyone that has Crohn's is definitely warranted. Our bodies weren't meant to go through this type of suffering and stress. It affects more than just your gut! Wife's 3rd infusion is this Saturday, she's been doing a bit better pain/gas/bloating wise, but the fatigue is still there, and nausea from time to time. Still frequent bathroom visits though, although she says she's going less, the urge to go is still there. Well wishes to everyone!

 

[duh panda]

Thanks. He begun the long journey of applying for disability. For the last 3 years he has had to quit 5 partime jobs due to frequent hospitalizations and constant flaring. He has also had to discontinue his college education 4 times. He still suffers from pain and diarrhea. He remains on iron infusions and is extremely underweight, extremely fatigued, and has multiple small intestinal strictures. But we are thankful Entiviyo has healed his large colon. Surgery for his perianal fistulas is scheduled for next month.

Wishing your son all the best in his upcoming surgery and treatment pursuits. Very promising to hear he's been able to heal some since starting Entiviyo. It is difficult to say the least to be learning how to manage a disease on top of basic life skills transitioning into independent living - I was just approved for disability after 10 months and it's been such a breath of fresh air knowing I'm doing everything I can for myself at this given point in time. Best advice is for him to be a pain in the ass - to call every month to check the status of his application. If he is still in touch with some employers have them write "witness" letters. It can go a long way in highlighting his everyday well-being and limitations in addition to how he looks on a medical chart.

 

[Memmy29]

First infusion of the pregnancy went well. No side effects so far, but I won't feel better until my next ultrasound

 

[Fernando1]

I have perianal Crohns and use Prax lotion several times a day. Prax is a special order from your pharmacy, does not require a prescription and costs $40 for a 3 month supply. It contains Pramoxine which is an anesthetic. It instantly stops the itching and reduces pain significantly.

 

[kimmidwife]

They decided to admit my daughter after her infusion this morning to try to figure out what is causing her terrible pain.

 

[duh panda]

Had 5th infusion yesterday and feeling pretty good - well I wouldn't say good, but I'm at my base "normal" and almost seems like joint pain is LESS then it was the past two weeks or so. No excess fatigue/ exhaustion and the headache was a breeze and easily managed with a couple Tylenol before bed.

These infusions seem all over the map, hoping the next couple start showing more of what it'll consistently be (and steady improvement at the gut level). Hard to say what, if anything the infusions are doing since there are so many other elements in the mix right now but next couple of months should determine where things will go.

 

[BlueSky]

Can anyone provide a layman's introduction to Vedolizumab? How is it similar or different from TNF blockers like Remicade--Cimzia--Humira? I've read scientific descriptions of how the medication works but I don't have the science background to follow. Is it an immune suppressive drug? What are the major risks or side effects? How long has it been in use?

I know this is a bit of a tall order. Thanks to anyone willing to jump in.

 

[mamabird]

@kimmidwife my thoughts are with you and your daughter as she gets through her hospitalization.
@duh panda congrats on your fifth infusion. I feel like I am a few weeks behind your schedule so it's good to hear of your "successes".
Wishing all entyvio peeps a good night. Hopefully tomorrow is a better day!

 

[duh panda]

Can anyone provide a layman's introduction to Vedolizumab? How is it similar or different from TNF blockers like Remicade--Cimzia--Humira? I've read scientific descriptions of how the medication works but I don't have the science background to follow. Is it an immune suppressive drug? What are the major risks or side effects? How long has it been in use?

I know this is a bit of a tall order. Thanks to anyone willing to jump in.

The way I've come to understand Vedolizumab is that TNF blockers act by preventing/ blocking a portion of the immune system found in a protein that results in inflammation. They are immunomodulators. Vedolizumab on the other hand focuses on interfering with the immune response in white blood cells within the colon (which may be part of why it is so slow and gradual) and is considered an immunesuppressant.

The idea behind Vedolizumab is that the immune response is triggered by white blood cells in their designated "area" of duty - they're the foot soldiers. Vedolizumab interacts with White Blood Cell A's message to surrounding cells that an immune response is needed. Eventually, all cells carrying that call to arms like White Blood Cell A will be interrupted/ suppressed by vedolizumab so it can't pass off the message; the cells will die and cycle; and with the reduction of white blood cells calling for action an inflammation free (or reduced) colon should commence.

 

[KMoose]

Hi Everyone!

I posted long ago, when I was first starting on Entivyo (in September). I just had my 6th infusion yesterday. I've read a lot of people unsure of the drug and if it is working. If you're still in the early stages, definitely hold out! I didn't feel a difference until my 5th infusion, and my lab work coincides with this!

My CRP before I started Entivyo was at 53.4 and now as of yesterday is at 16.2! There was a larger leap between my 4th and 5th infusions with my CRP being 46.9 and moving to 17.3. I'm starting to feel (almost) like my old self. I still have less of my colon from surgery in 2013, and still some symptoms depending on if I eat something funky, but my energy has improved tremendously, and I rarely experience that gutting pain we're all accustomed to.

I hope it begins to help you all!
~Kelly

 

[mamabird]

kmoose, congratulations and that is such inspiring news!!

 

[kimmidwife]

Kmoose, that is great to hear!

 

[kimmidwife]

My daughters had scopes today. They showed severe inflammation from her mouth to her anus. They are unsure why they think possibly an infection or reaction to the entyvio.
That is why she has been having such severe pain. They were very surprised since she only just finished weaning off the steroids a few weeks ago and was on them since October.

 

[Robrich]

]/I]IThank you Robrich. Makes me wonder if MTX on its own might do the trick (versus with the Entyvio). I saw that you had very long term success with remicade. That's encouraging as I have not tried that yet. I went straight to Entyvio for a variety of other health issues, but remicade is still an option. I also se that you have tried SCD, paleo and bone broths, all of which interest me too. What results did you have with that? I would love to know. Thanks again for responding.]

Rose write MTX might do it on its own. We never know about any of these drugs until we try them. For the most part I,ve been fortunate that I haven't had bad reactions to many of the drugs. i attribute that to not having other issues and taking good care of myself. Diet is a big part of that as is stress. I've had success with SCD maintaineding remission for several years but not in achieving remission on its own. The bone broths are great. Definitely feel it helps heal the gut and it's very nutritious and goes down easy. I use it as a soup base and add organic veggies and grass fed beef.
Remicade was the closest thing to a magic bullet. I thought this disease was history but no such luck!

 

[CLCH87]

It's been a while since I've posted. I got really sick in January before my 4th infusion and had that one stuck in my foot, which resulted in a blood clot. They added Entocort to get me through the flair. Now every month by week 5 or 6 I am getting sick again. Tuesday is my next infusion and I'm in bad shape. Has anyone increased the frequency to six or four weeks instead of eight? I have an appointment that same morning with GI and I think I'd like to increase it to six weeks instead of doing steroids. I gain weight from looking at steroids let alone taking them. I'd appreciate any input. oo:

 

[CLCH87]

First infusion of the pregnancy went well. No side effects so far, but I won't feel better until my next ultrasound

Have you talked to Takeda directly? I'm having surgery next month and they've never had anyone on it with this surgery so they want to keep in contact and write up my experience. I'm sure they'd be interested in your experience with it and pregnancy, and it can help a lot of others too. When's your next ultrasound?

 

[Memmy29]

Have you talked to Takeda directly? I'm having surgery next month and they've never had anyone on it with this surgery so they want to keep in contact and write up my experience. I'm sure they'd be interested in your experience with it and pregnancy, and it can help a lot of others too. When's your next ultrasound?

Will be in about a week and a half (13 weeks). I'll get in touch with them.

 

[kimmidwife]

Finally got the prelim results back. No infection was found as of yet. It appears to be severe Crohn's inflammation. They are wondering if the entyvio is actually making things worse instead of better. I don't know what the next step will be we are running out of drugs here.

 

[mamabird]

Kimmidwife, my heart hurts for you. Probably steroids is the next step for now. I am having a few set backs myself symptom wise. This disease is such a mystery. Wishing you and everyone well.

 

[kimmidwife]

Mamabird, they did start her on steroids. I meant next step for maintenance meds.

 

[LandShark]

kimmidwife, I'm sorry to hear that your daughter is having such a rough time. I don't know what drugs she's tried, but Stelara should be approved soon (from what I hear - and my gastro has had success getting approval for off-label use from insurance companies), and there are drugs in trials (Xeljanz, and other JAK3 inhibitors). I hope that there is something out there that works for her...

It's been awhile since I last posted. I'm doing pretty well, but am back on Uceris after a small flare-up (a month ago, following a GI bug). I do so well on it (though much better on it + Entyvio than Uceris alone) that I haven't really felt like trying to taper down lately. I'm only two weeks out from infusion #7, and this infusion seems to be holding up longer than the last one, so I'm hopeful that I'm going in the right direction.

 

[CLCH87]

I had my sixth infusion today. It went okay, except I felt really sick after, very nauseous. Now I'm having severe joint pain, back pain, and headaches. My doctor added Azasan to go with the Entyvio since it's only lasting six weeks before I begin to flair. It just seems like nothing I take touches this joint pain. Anyone have any suggestions on what could help?

 

[jtwist01]

Wife had her 3rd infusion last Saturday, she's made it a point to ask for Benadryl as a pre-med before every infusion. She's had reactions in the past to Remicade so it's just a precautionary measure (even though the nurses said it wasn't necessary). I would say that she is doing a tad bit better, able to do more activities around the house and the nausea has subsided a bit! Her doctor keeps telling her to hold out, but her colorectal surgeon said surgery may be an option. She said the entyvio seems like its causing her to "feel like she has to go" but when trying, it's usually just bile. Wondering if this is the med working? She does have an ulcer in her j-pouch though. Surgeon said that as of this point he wants to do surgery to basically "disconnect" the j-pouch, perform a loop ileostomy and let the j-pouch heal. I know a certain percentage of folks that have crohn's and a j-pouch, the j-pouch will eventually fail (just hoping that's not the case!) Wishing everyone the best, and praying for good health for all!

 

[sehart717]

First Entyvio Infusion

My nurse that administered my 1st Entyvio infusion was being very cautious and administered 25mg of Benadryl with an extra prefilled syringe in a baggie near me just incase we needed it quickly, 10 mg of Decadron, 500mg of Tylenol. I got the standard 300 mg and had some minor non threatening side effects, chills and sweating during, I had itching 30 minutes afterward, 4 hours after I am having a runny nose, a little back ache still sweating. None of the severe nausea or muscle pain others have reported thankfully. I had some weird stomach contractions or movements that I could feel, it felt like when I was pregnant and the baby was moving or kicking, very weird and I am def not pregnant.

Now having a bad headache and muscle/joint pain-5 1/2 hrs afterwards:shifty: hope this stuff stops, taking more tylenol 500 mg and going to take a nap with my kitty she always makes me feel better.

 

[sehart717]

I am not concerned about PML because Entyvio has not been shown to cause PML in any of its studies or with current patients. It is similar to a drug that does cause PML, but I find the PML hysteria to have little to no medical statistics proving it is a viable risk. I will still monitor myself for the symptoms but I do not fear that I will ever have them.

 

[sehart717]

Update 8 hours after first Entyvio infusion... Massive headache owwwie. Pain at a 7 yuck

 

[kimmidwife]

Sehart,
My daughter gets the really bad headaches after too. They seem to last about five days for her.

 

[rosewrite]

Just want to thank those who are further along with entyvio and seeing results for continuing to post. Given how new the drug is the more information shared the better. I know that once you are feeling well the last thing you want to think about is this darn disease so thanks again for checking back in. We need your information. After four infusions, I see no improvement and maybe even a worsening of pain and other symptoms, if that is possible. Both my local doctor and my mayo doctor are encouraging me to stick it out for another 2 or more infusions with mayo doctor suggesting going to a four week schedule. This just shows you how new the drug is because when I started they were saying if you didnt see results after four infusions it was unlikely to work. Now my doctors at least are pushing that number to six or seven infusions and talking about increasing frequency from 8 to 4 weeks. This is not a criticism but a reminder that we are pioneering a new drug making this forum and the info we share critical. Of course I have to survive the pain, fatigue and diarrhea in order to continue. Could someone just wake me up in four months?

 

[kimmidwife]

I agree rosewrite!
Are you on anything else to help it kick in?
They just started my daughter on methotrexate as a bridge. Her doctor said the studies show it could take eight months to a year to work.

 

[duh panda]

My gut has been feeling generally pretty good after the 5th infusion - with Methotrexate injections. No side effects really and what fatigue/ lack of energy is going on seems to be from a systemic yeast infection.

Had an MRI to check the status of a fistula/ abscess and since there's been no change got the go ahead to drop both antibiotics.

Will be having blood work done soon to check inflammation levels as well as for Remicade anti-bodies so if the Entyvio still isn't working to our satisfaction and/ or I still can't get off of Prednisone without symptoms flaring in the next couple months will go back to Remicade.

 

[CLCH87]

I've been admitted to the hospital with a confirmed allergic reaction to Entyvio. I can no longer take it and basically have to wait for the medicine to wear off. Ill be kept on a high dose of Prednisone and benadryl until it does. Good luck to you all, I hope you all reach remission.

 

[jtwist01]

I've been admitted to the hospital with a confirmed allergic reaction to Entyvio. I can no longer take it and basically have to wait for the medicine to wear off. Ill be kept on a high dose of Prednisone and benadryl until it does. Good luck to you all, I hope you all reach remission.

Eek! So sorry! The doctors were almost certain my wife wouldn't have any type of reaction although she was sent to the hospital in an ambulance after her first Remicade infusion! Keep your chin up! There are better days ahead!

@Sehart, my wife also has the horrible headaches after the infusion, usually starts for her the day after, tylenol usually doesn't help, but a cold pack on the back of the neck & a heating blanket on her feet seems to do the trick lol.

 

[sehart717]

Now I am having a fever and headaches but this seems to be the norm for most people.

 

[Octobergirl]

Hi everyone. I started Entyvio a week and a half ago. I get my second infusion next week. Is the consensus that you don't notice a difference until about 12-14 weeks? Or is it that it doesn't reach its full potential until then?

I'm on Imuran and prednisone, but neither are helping my gut at this point. I'm trying enteral nutrition again but feel like I'm going to go crazy since I was on it for 6 weeks not too long ago. I keep getting conflicting ideas as to when it should work. It seems like such a long time to hold out if you're doing poorly and steroids can't bridge the gap.

 

[duh panda]

Hi everyone. I started Entyvio a week and a half ago. I get my second infusion next week. Is the consensus that you don't notice a difference until about 12-14 weeks? Or is it that it doesn't reach its full potential until then?

I'm on Imuran and prednisone, but neither are helping my gut at this point. I'm trying enteral nutrition again but feel like I'm going to go crazy since I was on it for 6 weeks not too long ago. I keep getting conflicting ideas as to when it should work. It seems like such a long time to hold out if you're doing poorly and steroids can't bridge the gap.

Hey! Hoping Entyvio is the one for you.

So I felt amazing during the loading doses then not so much for the maintenance dosing, this last infusion (5th) I've slowly been feeling a bit better again - gut pain is certainly more then half of what it was 6 months ago but there's been a trade off with more joint pain. Still been unable to taper off 20mg of prednisone and we did add in MTX around the first maintenance dose to address upper GI concerns. Have discussed a shorter dosing schedule at 4 or 6 weeks but insurance won't approve. At 12-14 weeks might start seeing a difference at the cellular level and in blood work (I had a scope at that point that did show some improvement in the colon), however I didn't start experiencing consistent improvement till the 6 month mark with lower pain levels, more regular stools, interest in food, etc.

I figured it's a long time to hold out... but if I've already made it this long might as well go all the way to the year mark and make a decision there since I certainly don't want to try something else, have that fail quickly, and have to start over with Entyvio. If I were having to work or try to maintain school etc. I don't think I would have been willing to give it this long, but who knows.

 

[sehart717]

What type of insurance do you have?

 

[duh panda]

Blue Cross of Idaho but switching to Colorado County Medicaid since moving and dropping the Blue Cross once everything goes through.

 

[sehart717]

What non-narcotic drugs do y'all prefer to deal with your Crohn's pain? I used to take Levsin and Bentyl when I was younger. I preferred levsin for all over stomach pain, but Bentyl was very good with cramping pain. The levsin is sublingual so it dissolves under the tongue and works very quickly. I tried another one that had hyoscyamine (levsin), phenobarbital, atropine and scopolamine sulfate and helps with diarrhea, cramping and pain.

:sign0085:The only problem is that I am under methadone treatment and most doctors will not prescribe me narcotics or controlled substances. Plus I get tested for barbituates. I have to get special approval from the methadone clinic to take any controlled substances.

 

[LandShark]

sehart717, I know it sounds crazy but...heating pad. I've tried Bentyl and Levbid, Tylenol, etc. Nothing works as well as a simple heating pad (my pain is usually of the crampy variety).

Also, I've found that for mild pain, peppermint (tea, usually, but Altoids are good too, and you can usually find enteric-coated peppermint capsules in stores) and chamomile are good as well (and ginger is good for nausea that isn't quite bad enough to warrant phenergan or zofran).

 

[mamabird]

This has pain is outrageou and unbearable at times. What does anyone do?

 

[duh panda]

I'm with Landshark. Heating pad and various teas has been the best for the daily achy/ cramping pains. For the sharper pains or when it gets really bad I stick with that, gentle leg massages from family, and grit my teeth through it (Not the best plan according to my dentist) but ever since my initial hospitalization at 16 and over a month of IV morphine (and the withdrawals that came with getting off of it) I've struggled with any prescribed opiates/ pain killers and prefer not to walk that fine line.

In college during rough times usually a friend would offer up a joint or bowl but that always just passed me out - I never found it to really be good for pain management. Curious about looking into the medical side of marajuana since I'm now in CO but frankly don't think it's worth the effort, time and money. There's just come a point where I'd rather be clear headed and accepting of the pain however it might present itself at any given time then try to suppress or find someway to eradicate it from my life. Then again - I currently don't rely on work to make ends meet and have a bit more freedom now regarding meeting responsibilities where I can take the time to let everything run its course and adjust my days accordingly.

 

[Octobergirl]

Hey! Hoping Entyvio is the one for you.

So I felt amazing during the loading doses then not so much for the maintenance dosing, this last infusion (5th) I've slowly been feeling a bit better again - gut pain is certainly more then half of what it was 6 months ago but there's been a trade off with more joint pain. Still been unable to taper off 20mg of prednisone and we did add in MTX around the first maintenance dose to address upper GI concerns. Have discussed a shorter dosing schedule at 4 or 6 weeks but insurance won't approve. At 12-14 weeks might start seeing a difference at the cellular level and in blood work (I had a scope at that point that did show some improvement in the colon), however I didn't start experiencing consistent improvement till the 6 month mark with lower pain levels, more regular stools, interest in food, etc.

I figured it's a long time to hold out... but if I've already made it this long might as well go all the way to the year mark and make a decision there since I certainly don't want to try something else, have that fail quickly, and have to start over with Entyvio. If I were having to work or try to maintain school etc. I don't think I would have been willing to give it this long, but who knows.

Thanks for sharing your experience. It's interesting that you felt great during the loading doses. From what I've read it doesn't seem to be the norm. Were you at a higher dose of prednisone at the time? I'm sorry to hear your insurance won't approve a shorter dosing schedule. How frustrating.

I hope this works for me. Of corse I wish that it would work much faster. My GI is discussing IV steroids and TPN if I can't hold out. It makes me wonder how people who don't respond to oral steroids bridge the gap to when it finally kicks in. I guess I don't have many options left so I'll need to hold out anyways.

 

[duh panda]

Were you at a higher dose of prednisone at the time? I'm sorry to hear your insurance won't approve a shorter dosing schedule. How frustrating.

I hope this works for me. Of corse I wish that it would work much faster. My GI is discussing IV steroids and TPN if I can't hold out. It makes me wonder how people who don't respond to oral steroids bridge the gap to when it finally kicks in. I guess I don't have many options left so I'll need to hold out anyways.

When I started Entyvio we started tapering down from 40mg but I'd been sitting at that for over 6 months with minimal response - basically it was just keeping me out of the hospital. Have been threatened with hospitalization for IV antibiotics for a fistula/ abscess, and TPN due to poor nutrition/ calorie retention but have been able to dodge that bullet with the help of my mom (she's great at bringing me food every couple hours and helping me stay on track during the worst days).

Got down to 5mg over the first 8 weeks of Entyvio feeling generally ok but started seeing blood and experiencing high pain levels so we bumped the pred. back to the minimum that seemed to hold me (20mg) and added in methotrexate. I've been there ever since. The methotrexate was huge once it built up in my system (about 5-6 weeks) and has been managing the upper GI issues I was really struggling with and not noticing any changes in from the Entyvio. I think there are quiet a few whose drs. have also added MTX into the mix as a means of combination therapy with Entyvio.

Have been feeling pretty fantastic all things considered after this last infusion (5th) much like I was during the loading doses. So perhaps that shorter infusion schedule won't be necessary! Keep your head high and know you've got people to lean on to help get you through however things may play out - and have a wonderful day that summer weather is finally arriving!

 

[Octobergirl]

When I started Entyvio we started tapering down from 40mg but I'd been sitting at that for over 6 months with minimal response - basically it was just keeping me out of the hospital. Have been threatened with hospitalization for IV antibiotics for a fistula/ abscess, and TPN due to poor nutrition/ calorie retention but have been able to dodge that bullet with the help of my mom (she's great at bringing me food every couple hours and helping me stay on track during the worst days).

Got down to 5mg over the first 8 weeks of Entyvio feeling generally ok but started seeing blood and experiencing high pain levels so we bumped the pred. back to the minimum that seemed to hold me (20mg) and added in methotrexate. I've been there ever since. The methotrexate was huge once it built up in my system (about 5-6 weeks) and has been managing the upper GI issues I was really struggling with and not noticing any changes in from the Entyvio. I think there are quiet a few whose drs. have also added MTX into the mix as a means of combination therapy with Entyvio.

Have been feeling pretty fantastic all things considered after this last infusion (5th) much like I was during the loading doses. So perhaps that shorter infusion schedule won't be necessary! Keep your head high and know you've got people to lean on to help get you through however things may play out - and have a wonderful day that summer weather is finally arriving!

Thanks, duh panda. I'm sorry to hear you were on 40mgs of prednisone for that long. I'm glad the methotrexate has been a help for you. I'm wondering if Imuran may also have similar effects as a combination therapy with Entyvio. I'm on Imuran right now but have been on Methotrexate in the past.

You seem to have a very great attitude about this. I'm glad you're doing better after your last infusion. I really appreciate your support. And yes, yay for the nicer weather. It is definitely easier to be positive when the weather is nice and the sun is shining.

 

[CD mom]

I'm with Landshark. Heating pad and various teas has been the best for the daily achy/ cramping pains. For the sharper pains or when it gets really bad I stick with that, gentle leg massages from family, and grit my teeth through it (Not the best plan according to my dentist) but ever since my initial hospitalization at 16 and over a month of IV morphine (and the withdrawals that came with getting off of it) I've struggled with any prescribed opiates/ pain killers and prefer not to walk that fine line.

In college during rough times usually a friend would offer up a joint or bowl but that always just passed me out - I never found it to really be good for pain management. Curious about looking into the medical side of marajuana since I'm now in CO but frankly don't think it's worth the effort, time and money. There's just come a point where I'd rather be clear headed and accepting of the pain however it might present itself at any given time then try to suppress or find someway to eradicate it from my life. Then again - I currently don't rely on work to make ends meet and have a bit more freedom now regarding meeting responsibilities where I can take the time to let everything run its course and adjust my days accordingly.

This is something I have heard from other Crohn's patients:
http://naturalsociety.com/marijuana-reverse-woman-crohns-disease/

 

[sehart717]

I've been using my heating pad for a long time now, and yes it works way better than any pill, non-narcotic of course. I even get so bold as to wear my big blue bed buddy one in public when I run out of the thermacare thin ones. I don't care as long as I can participate in life I will look goofy with my heat pack. Peppermint tea did feel good when I was younger, I will have to get some.

I have Levsin and I am waiting for the doctor to call in the Bentyl. I told them I was trying to stay away from tylenol, they were giving me problems for asking for a med that wasn't on my meds list. I told them my liver enzymes were up and I had been on them previously, so I think they will call it in for me. I am trying desperately to avoid prednisone because of the psychiatric side effects it has on me, namely triggers my bipolar and makes me suicidal, depressed, and very impulsive.

 

[sk12383]

It's been a while since I've posted. I got really sick in January before my 4th infusion and had that one stuck in my foot, which resulted in a blood clot. They added Entocort to get me through the flair. Now every month by week 5 or 6 I am getting sick again. Tuesday is my next infusion and I'm in bad shape. Has anyone increased the frequency to six or four weeks instead of eight? I have an appointment that same morning with GI and I think I'd like to increase it to six weeks instead of doing steroids. I gain weight from looking at steroids let alone taking them. I'd appreciate any input. oo:

Hi there --

I have moved to Entyvio every 4 weeks and I am cautiously optimistic about it. It definitely turned things around for me when I had my first 4week infusion. I had been struggling the entire prior week and this helped a lot.
Definitely recommend increasing it.

I just got the second one but not doing so well. I think it takes a while for the new doses to catch-up, just like it takes the 8week dosing several months before it starts working. So I think it's definitely worth increasing it. I don't know about 6 weeks but to my thinking I'd go as often as possible. hope this helps!
Very curious as to whether others have gone to 4weeks and your results?

 

[sk12383]

My daughter is having horrible pain. Has anyone else had worsening pain with entyvio?
Her doctor thinks she has IBS as well causing this pain but she has never had this amount of pain before this.

YES to Entyvio causing abdominal pain. Ultimately it has helped me a lot (at least until more recently), but it was very painful during the first couple months. And recently having moved to every 4weeks, it's also painful again. Not sure why it's like that but I do think it will improve.

Entyvio also caused IBS-like symptoms in me. It made me change to the low FODMAP diet in addition to existing restrictions, which along with a couple supplements and HCl is effective.

 

[Gary]

Howdy Entyvio people.
4 surgery's, failed Humara, Stelara and too many other drugs to list. Knockin it down with prednisone for now, Entyvio's next.Thought I'd come over here to see whats up. Entyvio working for anyone. Hope it works for me.
I hate crohns!
Gary

 

[mamabird]

Hi everyone! Entyvio definitely stopped working after five weeks! All symptoms back and it is so discouraging! Getting fifth dose last week of May and dreading/looking forward to it at the same time. Maybe that will be the dose that turns everything around? Sending well wishes out there!

 

[Dunerfool]

I've been following the posts, but have not posted in a while. Going in for my 7th infusion later today (including loading doses). Still having to remain on Prednisone to minimize the symptoms -anything below 20mg/day and I start having issues. I talked with my doctor-who is still insistent that I "simply" have my colon removed due to his "concerns" of me be at high risk for colon cancer since I have had the disease for so long (about 26 years now). I told him that I am aware of several patients who have had success by reducing the 8 week interval to 4 weeks. He said he would research it to see if the change and documented research would support it. His answer via email a short few hours later was a resounding "no". I guess like many here, I have been hanging my hopes on Entyvio to work as nothing else seems to except prednisone, and we all know that is not a good long term solution. I will be approaching my 1 year time-frame of treatment this July/August and wish I had better news.

For those still on Entyvio, hang in there! Give it a chance-hopefully it will do the trick if given enough time for you.

 

[sk12383]

Hi everyone! Entyvio definitely stopped working after five weeks! All symptoms back and it is so discouraging! Getting fifth dose last week of May and dreading/looking forward to it at the same time. Maybe that will be the dose that turns everything around? Sending well wishes out there!

It can take 7 doses at least before it works. And don't forget there's always the chance of getting it reduced to 4week intervals.

It's so weird how long Entyvio takes to work compared to other biologics but I suppose the good news is that every day that passes is another step closer to it working.

 

[GABoy]

Hello everyone,

I was diagnosed 10/2013 with peri-anal Crohn's. I've been on Humira for over a year. A couple of weeks ago, I was in surgery again. My gastro has decided it's time to switch to Entyvio or however else you spell this medication, along with 6MP. If this doesn't work, I'm looking at a proscectomy and illeostomy.

I guess my question is does anyone here have peri-anal Crohn's and how effective has this medication been in bringing it under control. What side effects, if any, have been the worst? Has anyone taken it with 6MP? Thanks in advance.

 

[mamabird]

Hi GAboy, I have peri anal crohns and I have noticed some improvement with the fourth dose of Entyvio. I have been on every biological, 6mp, steroids and enemas and three
bowel resections. I am holding on to some hope that dose five of Entyvio will help. It is horrible with the pain and leakage. I wish you the best. What topical agents do you use?

 

[Robrich]

I Have PA Crohn's.
Had to add MTX to the Entyvio to get results. Able to lower pred from 40 to 5mg/d.
6 mp could help but takes a long time to kick in.

 

[gardeniagirl]

My son who is now 24…was diagnosed with severe Crohns at age 15 and has been on Entyvio since Nov of 2014. After his first 3 infusions he started experiencing severe back pain. In Jan 2015 he had to be admitted to the hospital with a severe flare and had to be put on pain meds for the back pain. At that point we felt Entyvio was not working for him. Since he has had 2 maintenance infusions and while he is finally off Prednisone and feeling better from his usual Crohns symptoms…he started experiencing just about every common side effect of Entyvio …like itchy rash on face and chest, bad headaches, extreme fatigue especially right after infusion, extreme joint and back pain even with pain meds, fever and slight nausea. On top of that he tested positive on his ANA test….and was told by the Rheumatologist that it might be Drug Induced Lupus. While his experience with Entyvio has not been that positive…it may be for others …just wanted to post for those that are curious about its possibilities and wish success with all that want to try it. My prayers go out to all of you who suffer everyday…like my son...with this horrible disease…may we always stay hopeful for a cure<3

 

[Gary]

Amen to that Gardeniagirl.
Sorry it dosnt seem to be working for your son. Hopefully it works for some of us. Stuff is stupid expensive too.
Cheers,
Gary

 

[GABoy]

I thought I was pretty well controlled with Humira until 4/22, when I abscessed again and had to go into surgery the next day. They put a Seton in again and a separate drain that was removed on 5/1. My MEDS are just now being changed. I do not know what topical I will have or if I'll be back on Pred in addition to the 6MP and Vedolizumab. My disease is pretty much restricted to the rectum at this point, so I have not had any resections. Thank you all for the advice and I will look to you more, I'm sure, as I start the medication.

 

[Crohn2357]

If anyone gets tachycardia and frequent, severe headaches after starting entyvio, you may be allergic to it. These symptoms disappear 2-3 months after stopping the medication.

 

[sk12383]

Hi all,

I'm curious as to how many of you were also put on an immunomodulator like Imuran at the same time as starting Entyvio. My doc wouldn't b/c there was no prior evidence of efficacy (of course not, I said today, it was brand new!). But certainly it couldn't hurt to try to stop the antibody formation.

Now the docs are saying it's too late to add immunomodulators and my only hope is basically to see if the 4 week entyvio kicks in.

Are those of you on immunomodulators + entyvio doing well?

I was going to have my anastomotic stricture dilated but my new GI went on and on about the risks of performation/ostomy and wants to send me straight to the surgeons to have the anastomosis repaired (my surgeon says he can repair it once more before going to an ostomy).

My thinking is: give the entyvio some more time if possible and go on the strictest diet I can possibly handle, which I'm guessing will be cutting out all grains. Sorry to get off topic, just wondering if anyone had thoughts on all this. I do think 4 week entyvio is better than 8 but doesn't seem to be for everyone. Thanks!

 

[mamabird]

Hi sk12383! I am on a low fodmap diet as per a dietician specializing in IBD and it has definitely helped. (Of course not 100% because what does?!) also it is a modified version b/c I can't do high fiber or nuts b/c of multiple bowel resections. I follow Kate Scarlata's blog (she is the pioneer of this diet). Best to you and all!!

 

[Robrich]

Hi sk12383
I added MTX to ENTYVIO after 3rd infusion and no improvement.
Helped a lot
MTX works faster than 6/mp I mm urban. 4-6 weeks vs. 4-6 mos.
Inflammation cleared up able to get off entocort and down to 5mg pred from 40.
Definitely worth a try
Go for the injections, works better less side effects, painless.

 

[duh panda]

Hi all,

I'm curious as to how many of you were also put on an immunomodulator like Imuran at the same time as starting Entyvio. My doc wouldn't b/c there was no prior evidence of efficacy (of course not, I said today, it was brand new!). But certainly it couldn't hurt to try to stop the antibody formation.

I was also put on MTX (1 ml injections/ weekly) right around the third infusion since things were not moving fast enough/ I wasn't staying stable. It helped tremendously in treating the upper GI tract since I was experiencing ulceration in stomach in addition to small intestinal issues. Saw reduction of the upper GI pain and slowly colon has settled a bit - not where we'd like it to be and I remain on 20mg prednisone but there has been limited improvement since adding the MTX.

My doctor's line of thinking is with yours - not sure whether or not immunomodulator's with Entyvio slow antibody formation but it couldn't hurt.

She figures since the immune system was already compromised/ modified from over a year of prednisone and introduction of Entyvio adding a third medication to stabilize and improve odds of management outweighs the potential cons. Personally the rate and struggle of managing various infections from a lower immune response has been consistent with when I was on Humira alone.

That combined with diet sticking to plain simple foods has kept me out of the hospital so far and is offering me the time needed to give Entyvio the length of time it requires to see the full picture.

 

[Gary]

Ive been on mtx seems like forever.
With humira, stelara, prednisone and by itself.
Pretty sure doc will keep me on it when I try entivio next month.
Good health to us all. :0)
Gary

 

[Octobergirl]

I'm on Imuran with Entyvio right now. I'm on the full dose since that's what I was trying to maintain on before I started Entyvio. I'm not sure if my GI will lower the dose once the Enytvio kicks in (I've only had 2 infusions).

I am also on prednisone right now too, and I think the Imuran is helping to keep my extra intestinal symptoms at bay, at least the skin issues, no erythema nodosum. I did have to start the prednisone for breakthrough arthritis, but thankfully I've been able to taper down.

As much as I hate to be on so many meds, I'm a little scared to taper down from the Imuran in case the arthritis comes back.

Is anyone who is on Imuran or 6mp staying at the highest recommended dose, as in the dose that you would be on if you were using it as your sole medication?

 

[duh panda]

Met with doc. today. Dropping entyvio and going back to Remicade since I never technically failed but rather switched after 6 months to humira years ago for convenience in college. Will remain on MTX with Remicade for combo treatment. Sounds like she is generally unimpressed with entyvio, and in studies a 4 week dosing schedule didn't show wide enough results across study groups to be approved hence such difficulty getting most insurances to approve. I feel the 8 months I've given it without much improvement at most basic levels in blood work is enough for me to call it at this point. Best of luck to those getting further along and seeing it through or just getting started!

 

[lgpcarter]

Any Canadians on Entyvio? Talked to my GI today and it looks like Stelara might not be doing the job. Will know more after tests, but since I have been on basically everything else, he mentioned Entyvio, which has finally come to Canada. Also wondering if anyone's insurance has approved it? I have Manulife who has been good to me, but did deny Stelara.

 

[Gary]

I'm Canadian,
Not on it yet. Next month I think.
Not sure who's paying. Stuff is ridiculous expensive. If it's been approved in Canada, then I think I have to pay at first and then pharmacare insurance kicks in. I'm Self employed. Glad we got universal health care in this country.
Hope it works.
Gary

 

[GABoy]

SK12383,

I'm going on 6MP with Entyvio. I have my first infusion scheduled a week from today. I will let you know if it helps at all. I was on Humira, which did nothing. I've been off Humira since last month. I fell pretty crappy right now as I'm on nothing. I feel rather lethargic and I'm having pain in the right side of my abdomen and rectal pain (no abscess, thank god). Anyway, I will let you know how it goes with the 6MP + Entyvio.