Current Condition

[Jeffer05]

Re-posting due to previous typographical error.

It's been a while since I posted here. Generally over past 10 years my
UC was mild to moderate so I was accustomed to living with it.

About a month ago I developed a really bad flare. My usual diet
modifications did not help. Normally it would.

Now I'm having severe symptoms and on the dreaded Prednisone for
treatment. I want to try a Biologic but not sure which one.

10 or so years ago I did some Remicade and that worked well. I only did
it for about 6 months or so.

Now I have a choice between Humira, Stelara and Remicade.

Does anyone have any advice as to which one is best for severe UC? What
experiences have people had?

I've read up on them and it's hard to distinguish any one as clearly
being better than the others.

thanks in advance
Jeff N

[Rufus]

I've been on Humira at max dose (weekly) for many years for a
combination of Crohn's/Iritis/Spondylitis and it's worked very well for
me. But from what I've been able to observe here and among friends,
which one does best really depends on the individual. Some people are
allergic to Remicade, some aren't, forex.

So you simply have to try them until you find the right one for you.
Hopefully your Rheumatologist will support you in this. A good
Rheumatologist is an essential asset.

--
- Rufus

[Jeffer05]

Thanks! I ended up getting Stelara as my GI kind of pushed me in that
direction I think only because as she said having to inject it once
every 2 months was better than once every 2 weeks for Humira.

It does seem to be working now after my 3rd dose. First dose was an
infusion which took about 1 hour to get it all in. The 2nd and 3rd doses
I did at home with self injection needle. I studied acupuncture a long
time ago so I had no problem jabbing myself. They have a specially
designed needle that has a sleeve that automatically slides down over
the needle after you are done pushing the plunger on the syringe. I
somehow didn't get all of the medication into my body when I was
pressing the plunger, I think due to my tissue compressing. When I
removed the needle about 5 or 6 small drops shot out. That was probably
about $300 worth since it cost me $3,600 for that 1 shot. The next shot
was only $1,300 as I went right through the donut hole from the 1st one.

Anyway it does seem to be working now but I don't know how long I will
take it due to the massive cost of it. If I get my diet under control I
think I can manage the symptoms better. I had the worst flare ever this
January and went on Prednisone for a couple months then got on the
Stelara after that. I also took some Asacol, Cipro, and lots of Imodium
during that time. Also I've been taking Vicodin for many years for a hip
problem, bad hip replacement left me with lingering pain. But strangely
enough the Vicodin has some beneficial effects on my colitis. It tends
to move the needle between constipation and diarrhea more towards
constipation which is a good thing, and also cuts down on the feeling of
needing to go! That is one of the worst parts of UC for me is the
feeling you may need a bathroom. It has prevented me from doing many
things. Even just a 15 min trip to the store, let alone going out for
dinner or a movie. It's had a severe impact on my social activities. But
I feel things are changing now and I'm starting to get out more. In
spite of turning 70 last month. Haha!

Hope you are well. I wonder how the old gang here is. It's been so long
since I posted here. Back in around 2003 in my early days of having UC i
was here a lot. Boy we used to have some pretty lively flame wars back
then. I do hope everyone has found therapies that work for them.

[Rufus]

Glad to hear it's working for you, at least for now. I had to pre-load
my Humira as well, so not surprised that you needed to get to a second
dose to show real results. I'll have to look up Stelara - that's a new
one on me. The doc that first put me on Humira was instrumental in the
development of Enbrel, but said Humira was a "better molecule". Enbrel
and Humira are both TnF Alpha agonists.

Also - check and see if there is a patient assistance program for your
Stelera. The raw cost on my Humira is $1200 a dose, but I'm on an
assistance program and I get a 3 month supply (12 doses in my case) for
just $5 out of my own pocket. Worth an ask!

--
- Rufus

[Rufus]

Rufus wrote:
> Glad to hear it's working for you, at least for now.  I had to pre-load
> my Humira as well, so not surprised that you needed to get to a second
> dose to show real results.  I'll have to look up Stelara - that's a new
> one on me. The doc that first put me on Humira was instrumental in the
> development of Enbrel, but said Humira was a "better molecule".  Enbrel
> and Humira are both TnF Alpha agonists.
>
> Also - check and see if there is a patient assistance program for your
> Stelera.  The raw cost on my Humira is $1200 a dose, but I'm on an
> assistance program and I get a 3 month supply (12 doses in my case) for
> just $5 out of my own pocket.  Worth an ask!
>

YES - there is a $5 copay available for Stelara!

https://www.rxpharmacycoupons.com/stelara-manufacturer-coupon

And it seems there are a few options available -

https://www.janssencarepath.com/hcp/stelara/affordability/helping-patients-afford

I know my assistance is direct from the manufacturer...so check the
Janssen site - and ASK!

--
- Rufus

[Luke Luke]

Hi Jeff,

I'm in the USA and on Medicare due to disability. When you said donut hole" you made me think of Medicare Part D.

I was able to try Stelara despite the huge cost by going to an infusion center and having them do the injections. It took awhile to set up and make sure it was proper but since they did the injections, my Part B plan covered it which brought the cost down a lot.

--
Luke