My Things 2 Do Entyvio week one

On September 28, 2016 I started Entyvio infusions for my Crohn’s.  You know what I’m going to quit calling it my Crohn’s. I didn’t ask for it, I didn’t buy it. I don’t want it.

So I thought I’d make  a sort of diary of how things are going with Entyvio for the first 6 months since that is how long my doctor told me it would take before the medication would start working. I’ve decided I’m going to type all this out daily and edit it as I go. I’m not sure yet how often I will post updates on this so.

For those who don’t know what Entyvio is let me give you some information on it.

ENTYVIO is a prescription medicine used in adults with moderate to severe
ulcerative colitis (UC)
or Crohn’s disease (CD).

How can ENTYVIO help patients with CD?

ENTYVIO treats gastrointestinal (GI) inflammation that occurs in adults with moderately to severely active CD. If you have not experienced the results you are looking for from other treatments, including steroids, immunosuppressants, or biologic therapies, ENTYVIO may help you:

Relieve symptoms caused by flare-ups

Achieve remission—early remission is possible

Reduce or eliminate the need for steroids

 Patients with CD taking ENTYVIO showed significant improvement in their disease:

  • 15% achieved clinical remission at 6 weeks, compared with 7% who took a placebo
  • 39% achieved clinical remission at 1 year, compared with 22% who took a placebo
  • Twice as many reached steroid-free remission at 1 year versus those who took a placebo

Important Safety Information about ENTYVIO® (vedolizumab)

  • Do not receive ENTYVIO if you have had an allergic reaction to ENTYVIO or any of its ingredients.
  • ENTYVIO may cause serious side effects, including:
    • Infusion and serious allergic reactions can happen while you are receiving ENTYVIO or several hours after treatment. You may need treatment if you have an allergic reaction. Tell your healthcare provider or get immediate medical help if you get any of these symptoms during or after an infusion of ENTYVIO: rash, itching, swelling of your lips, tongue, throat or face, shortness of breath or trouble breathing, wheezing, dizziness, feeling hot, or palpitations (feel like your heart is racing).
    • ENTYVIO may increase your risk of getting a serious infection. Before receiving and during treatment with ENTYVIO, tell your healthcare provider if you think you have an infection or symptoms of an infection, such as fever, chills, muscle aches, cough, shortness of breath, runny nose, sore throat, red or painful skin or sores on your body, tiredness, or pain during urination.
    • Although it has not been reported with ENTYVIO, it may be possible for a person to get progressive multifocal leukoencephalopathy (PML) (a rare, serious brain infection caused by a virus). People with weakened immune systems can get PML, which can result in death or severe disability. There is no known treatment, prevention, or cure for PML. Tell your healthcare provider right away if you have any of the following symptoms: confusion or problems thinking, loss of balance, change in the way you walk or talk, decreased strength or weakness on one side of the body, blurred vision, or loss of vision.
    • Liver problems can happen in people who receive ENTYVIO. Tell your healthcare provider right away if you have any of the following symptoms: tiredness, loss of appetite, pain on the right side of your abdomen, dark urine, or yellowing of the skin and eyes (jaundice).
  • The most common side effects of ENTYVIO include common cold, headache, joint pain, nausea, fever, infections of the nose and throat, tiredness, cough, bronchitis, flu, back pain, rash, itching, sinus infection, throat pain, and pain in extremities. These are not all the possible side effects of ENTYVIO. Call your healthcare provider for medical advice about side effects.
  • Before receiving ENTYVIO, tell your healthcare provider about all of your medical conditions, including if you: have or think you may have an infection or have infections that keep coming back; have liver problems; have tuberculosis (TB) or have been in close contact with someone with TB; have recently received or are scheduled to receive a vaccine; or if you are pregnant, breastfeeding, plan to become pregnant, or plan to breastfeed.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

©2016 Takeda Pharmaceuticals U.S.A., Inc.

Ok so we know what it is now for my diary portion of this post.

Day One: I’m getting my infusions at the infusion clinic near by.  Since it’s my first treatment the head nurse has to go over my records and prior blood test.  Well along with my dads tiny veins that run not roll but actually run and hide, I now also have a high platelet count like he did. UGH. Thanks Daddy.

I don’t know about anyone else but the commercial I saw for Entyvio was wrong wrong wrong. The commercial said that the infusion would take 30 minutes and shows a woman walking down the street all happy and stuff. HA  What it should have said was that after your infusion you will sit for 30 minutes and then go home. Total time there was 3 hours.

Day two: Well as far as side effects go I still have headaches. To be fair I was having headaches with Humira as well. Around 5 pm I had a wicked fever. It was 102.  I contemplated telling my supervisor that I had to leave work early but my wallet had a heart to heart with me and I stayed at my desk in my office until it was time to clock out.

After a cool shower and wrapping my body in layers of blankets I was able to break the fever by morning.

Day three: Feeling slightly drained from the fever of last night and all.  I decided to rest on the couch and rest until having to drag myself into the office to work.

Day four: All of a sudden I am full of energy and risking TMI I had a bowel movement this morning! For those with Crohns you know that there are terrible things but being constipated hurts like a….. well you fill in the blank. So back to having extra energy; I spent 5 hours cleaning every nook and cranny in my house.

Day five: Guess what?! Another bathroom moment for me! I might add that I haven’t had any pain the last 3 days! No pain gives me more focus. I’m able to work on my blog again! I haven’t  posted anything  in over a month. Honestly I was just in so much pain all I wanted to do most days was go from the bed to the couch and back to bed. Those with Crohns know exactly how this feels.

My appetite is picking up! I put a pork roast in the slow cooker this morning.

Day six: Still feeling good. I decided to pick up my walking again.  Taking it a little slow today and only walked 1/2 mile. River was happy about that. Appetite still good. Still having bathroom moments. Those moments haven’t become fully formed yet but I’m not complaining.  Still no pain.. I think this medication is working faster than anticipated. Tonight I’m going to start meditating again. I was ding it in the mornings, bp, (before pain). I want to see if meditating at night will help me sleep better.

Day seven: I walked an entire mile this morning! I hadn’t done that in over a month. I waling with River even if she gives up after a mile. I swear the dog has her own pedometer implanted inside her. Before getting so sick I wanted to do 2 miles. I’ll have to ditch the dog after the first mile and then go back for the second mile. Not today though. I’ll work up to that  who knows maybe I can talk her into doing it with me.. LOL No pain!

Day nine: Ok wow nearly an entire week of no pain! I haven’t had any more fevers so far either.

So other than totally looking at my clocks wrong today and going into work an hour early, (oh no is this how the brain infection starts?? let me stop I’m just kidding I just simply had a pre-senior moment), I’m doing awesome.

I’m still taking steroids. I will be until my gastro doctor says I’m good enough to come off of them. Ugh I’ve been on them for 6 months now.

So after t

 

 

 

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