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05-11-2017, 05:29 AM   #1
Norseman
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First dose done

Went and got my first dose of Ventyvio today. It all went fine. So far i feel quite normal, so no acute side effects as a result of the treatment. Will see how I feel the next few days, and they gave me 24/7 phone number to call if I have any reactions.

Good free wi-fi at the hospital too, so I basicially sat there and enjoyed a couple of hours of movies on Netflix, while chatting up the cute nurse
that kept an eye on me in case I had a bad reaction :-)
So I am probably inscribed in her book of morons to avoid now,
lol
05-11-2017, 05:32 AM   #2
ronroush7
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I hope it continues to go well for you. Keep us updated.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-11-2017, 11:24 AM   #3
Norseman
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Also been pain free, and with much less diarrhea after since I started on Prednosonol and Questran. My pred doage is now down to 4 tablets a day...I started on 12...


But the nurses at the infusuin centre at the hospital was worried enough about the level of infection in my body after the blood works, that they discussed with my surgeon if I should recieve my dose today. Also got a letter from him about upping my vitamin D dosage considerately as I have a serious lack of Vitamin D...
05-11-2017, 12:09 PM   #4
ronroush7
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Did they do blood work at the infusion center? I am due for an infusion tomorrow?

05-12-2017, 07:05 AM   #5
Norseman
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Did they do blood work at the infusion center? I am due for an infusion tomorrow?
Yes, I had it done the day before as my appointment was at opening hours. They need a couple of hours to process the blood work. The tell me I have to get my blood work done every time i come in for an infusion. Next is in two weeks. Then one 4 weeks afetr that, and then I will be on one infusion every 8 weeks.

The reason is that if my inffections levels are too high, they cant give the infusion.

ther ewas also a questionaire that asked me how I was feeling, if I have had any medical trouble sinc elast time...even if I was pregnant, had to laugh at that one since I am male which earned me another death glare from that cute Nurse :-)
05-12-2017, 07:11 AM   #6
Norseman
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Oh and I still feel quite normal..i.e no side effects that I can detect. No other effect eitehr at this stage, but that is not suposed to happen yet either.
05-27-2017, 03:59 PM   #7
Norseman
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No ill efefcts after second dose either, except a big blue bruise on my arm aftera couple of failed attempts to get a needle into my not very cooperative veins, lol

They had to call in a nurse from the ER to get a needle in me...and even she had trouble.


No positive effects that I can tell either. Supposed to send in some stool samples next week...

Next entyvio treatment in 4 weeks time, after that, its every 6 weeks...
05-27-2017, 04:27 PM   #8
ronroush7
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No ill efefcts after second dose either, except a big blue bruise on my arm aftera couple of failed attempts to get a needle into my not very cooperative veins, lol

They had to call in a nurse from the ER to get a needle in me...and even she had trouble.


No positive effects that I can tell either. Supposed to send in some stool samples next week...

Next entyvio treatment in 4 weeks time, after that, its every 6 weeks...
I hope good things for you
06-24-2017, 04:10 PM   #9
Norseman
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Third doze done a couple of days ago. Some light headache and insomnia the first night, but no problem after this.
Went in for a routine chat with my gastro surgeon, and he had some good news for me.
The last faecal calprotectin test taken before my 3rd dose of Ventyvio shows that my faecal calprotectin level is down to 278 from around 1300 before I started the new treatment in April.
He told me this is the lowest level since I was diagnosed. The goal is to get me bellow 200 and keep me bellow that mark. The level for healthy people is around 50....
He wants to keep me on a low level prednsolon (5mg) until he is sure the Ventyvio is having an effect though.
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