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Stelara not working

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Crohn's Disease
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Posted 2/25/2019 5:46 PM (GMT 0)
I have just started Stelara-I had my 3rd injection last week-but so far it does not seem to be working. I know it must be helping somewhat, but I am still in pain and it does not last the full 8 weeks for sure. I know that the normal amount is 90mg and I am getting less than that because my insurance had to confirm that this dose was correct. I'm wondering if my dose should be increased, if I should try to start on pain meds or if this is just not working for me.
Posted 2/25/2019 8:55 PM (GMT 0)
Hi Mwild. You said you just started Stelara & you are awaiting an approval of the dosage being increased. Personally, if this were me, I would give it more time before throwing in the towel. Sadly, when we are feeling bad we all want to feel better as fast as possible. However, often it takes some time for the medication to reach it's therapeutic level. What were you on before Stelara & to what extent is your disease level considered by your dr? A lot of people are getting good results with Stelara.

Hang in there.
Posted 2/25/2019 9:02 PM (GMT 0)
Ive done Remicaide in the past and recently had a long, great run with Humira until it stopped working. You're right for sure, instant results are always wanted lol. I have an appointment this week with a pain management specialists, so maybe they can do something to help with the pain until the Stelara can set in. I have read some great things-but some people have said the wait is long, but worth it. Have you had any experience with pain management drs?
Posted 2/25/2019 9:03 PM (GMT 0)
I forgot to post the level of my crohns-its been pretty mild until this last fall and then it went all downhill. so im still trying to get back to a good place.
Posted 2/25/2019 10:53 PM (GMT 0)
Mwild, what kind of pain are you having, I am guessing joint pain? I have been under the care of PM drs for years for other conditions. Keep in mind our country is in what is called an "opioid crisis". Getting pain medication is very difficult these days. The dr will most likely ask why you are there, go over your medical history, an exam & you will be asked to give a urine sample. This is to check to see if you have any drugs in your system that you shouldn't have. He/she will determine if you will be accepted as a patient. Some drs will not give a script on the first visit. So, if this happens just don't be surprised. If you are accepted as a patient, you will be required to sign a Contract, which will state what you are required to do as long as you are a patient there. The important part of the Contract is you will agree not to accept pain medication from any other dr as long as you are his/her patient. Some drs do monthly UA's or at random. Just read the Contract before signing.

I hope your appt goes well!
Posted 2/26/2019 1:11 AM (GMT 0)
Intestinal pain-inflammation with the cramping that goes with crohns. It has me doubled over most of the day and has been severe for a couple of weeks now. I have no problem doing drug tests or contracts or whatever else they need from me! I honestly don’t even care what they give me-I just want some relief. Thank you for the information for sure!
I’m really hoping it goes well!
Posted 3/2/2019 2:02 PM (GMT 0)
mwild1021: what are your symptoms?
Posted 3/12/2019 3:24 AM (GMT 0)
Did you do the IV loading dose that approved for CD by the FDA or did you get the psoriasis dose? You didn’t mention the loading dose in your first post of this thread.

Prometheus Labs has a blood test to see if you have antibodies and the therapeutic levels for your body.

I’m doing great on Stelara. I originally started with the psoriasis dosage which didn’t work that well for me then I had to stop for 6 months due to another surgery. When I restarted Stelara I was given the loading dose and have been doing great ever since.
Posted 3/12/2019 10:24 AM (GMT 0)
Have you thought of asking your doctor for a short steroid course to help calm things while the Stelara has time to reach therapeutic levels? Sometime it is the only thing that will calm my Crohns flares.
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