DID my first shot of Stelara today

It was easy and didn't hurt at all! Small needle, you wouldn't believe it! Humira was so painful!!! So I'm 8 weeks in on Stelara and doing great! Not perfect, but so awesome!!

I'll have my second dose of Stelara in 2.5 weeks and they are going to show me how to inject myself.

I'm a bit scared to inject myself, but really really glad to hear it doesn't hurts

Since a week (so about week 4-5 after starting dose), I really feel better... Like Stelara could be working! (so exciting!!!)
But I have to stay realistic too, I'm still on 25 mg of Pred and I am easily symptoms free between flare with special diet of mine (but absolutely no cheating allowed).

Can't wait to do my blood works at 10-5mg of Pred and see how low my CRP is now.

Keith and Miracles : Do you guys have normal CRP with Stelara?

climbsnowgirl,

My crazy infectious disease doctor didn't do a CRP on me last week but she did run a Sed Rate per my request, it's the best that I've ever seen it. My SED Rate was a 5

Do you take b-12 shots?

I would get energy when I would tapper above 20 mgs but when you get below 20mgs it's another ball game. the last 20 mgs are the trickiest, especially below 10 mgs.

My vitamin b was tested and was normal . Would u still take some then?

Hey Keith how did ur shot go? Are you still taking doxy for lymes? How have you been feeling? Let me know if u feel tired too after shot please.

Miracles,
As you said, there's many factor to consider with your fatigue : Stelara shot, pred got down to 5mg, low iron and low vit D.

If it would be my body, I would first attack the iron problem. I got anemia recently and eventhough I'm on a good amount of pred, I could feel the energy coming from iron pills (not even infusion!). Finally, from a day to another, my cheeks got red again and hair stopped falling.

I get adrenal fatigue too, but only few days after stopping completely Pred. I usually have it for a week, after that, my body starts producing his own cortisol again, yea! But like, you could have it right now, so checking your adrenal gland is not a bad idea either.

If you're struggling like this then you probably need to taper slower. Maybe you can get pills at a smaller mg dosage.

Miracles,

I'm really tired, don't know what it is but I had some blood work last week and all of it came back pretty good. Just borderline anemic. They took 5 vials of blood from me.

GI wise I'm pretty good. I'm almost 4 weeks out from my last dose.

I take Pepto and it really helps me with gas and bloating; if I don't take it then I'm in some discomfort.

I doubt there will be many HW people on Stelara for a while, it's more of a medication of last resort because it is so expensive. My insurance company is billed $40K every 8 weeks; their discounted pay rate is ~$19k.

climbsnowgirl said...

On the other side, this week I already feel that the Stelara get a bit weaker, but my nurse told me that we could do the stelara every month if necessary.

What would the monthly dosage be? 45 mgs or 90 mgs? I'm on 90mgs every 8 weeks. Previously I was on 45 mgs every 8 weeks.

My sed rate is 12. My CRP is .7

I was at my GI yesterday, I forgot to ask him about future dosing changes if needed. I was late for the appointment, got stuck in traffic...errr.

He said there is a next gen small molecule drugs that are on the horizon and he is really excited about them.

Hey guys,

So this is the update about my situation with Stelara :

I've got some test results mid-July, they were my first results since I completely stop pred (and easily, thanks to Stelara!). My CRP got down to 10, which is really good, my best result in 2017 On the other side, my Calprotectin level was high (600). Don't know what to think about it... This is kind of high for the symptoms I have...
My GI have decided to prescribe me Stelara every 4 weeks and I'll have crp, calprotectin and Stelara concentration level checkout often. It is also done for a clinical trial that I'm participating.

In general, I do feel better, but it's not always perfect. I do have some bad days. I was feeling awesome after my second shot, but 5weeks later some symptoms came back and the third shot didn't seem to be efficient as the second one. Since a week, I saw mucus again, everyday. I even got blood. Only once, but the toilet was all red. It got away quick and I think it's from what I eated the day before (must be peperonni (first time I've got this meat since a lonnnnng time) or a kombucha brand that I tried for the first time).

Also, my brother and father have Crohn's Colitis (recently diagnose). I did order a first bottle of Isatis Cooling to give it a try as I see so many good comment about it on this forum. Have you tried it? I asked my brother to try it and he have some improvement (usually, nothing works on him). So I did order more, for me and my father. We'll see, maybe it will help with Stelara!

therearmiracles, Keith : How are you doing?

therearmiracles : Oh, I saw your post about popcorn recently, I hope you are doing better!! Personally, I don't think I could ever eat popcorn again

I'm feeling pretty good. Some ups and downs but overall very happy with it.

I'm off to my cousin's wedding this evening, not worried about food or UC thanks to Stelara