Undecided about treatment

Stelara is MUCH safer than steroids. If you take steroids long term you risk osteoporosis, diabetes, weight gain and a host of other problems. Of all the biologics stelara is one of the safest and it may help your joint pains, uveitis and colitis in one.

Steroids were much worse for me than any biologics I've been prescribed. Steroids only cover up the symptoms and cause a lot of harm to other body parts. YOU have to decide for yourself, but for me...the less steroids, the better. Good luck to you.

RS2022, welcome to the forum. The other members has given you excellent information about prednisone. I ended up with osteoporosis at a young age. I've had treatment for it, not the best results, however, some results are better than none.

If you plan to go on Stelara, I would not do the SCD diet at the same time. The reason I say this is once you start improving you will not know which one is working.

Can you get copies of the scope & biopsy reports? You can request copies. I know it's frustrating when drs don't agree, however, Stelara is used for both diseases.

Take care.

The finding of granulomas in the biopsies is a strong signal that this is likely Crohn's and not UC.

The history and symptoms you describe (more constipation than diarrhea, mucus, and not all that frequent blood in stool, the longstanding belief it was IBS instead of IBD) also indicate Crohn's is likely.

In that case, the mesalamines like Lialda wouldn't have done much if any good for you anyway.

Since Crohn's disease is highly suspected, you should have further testing to help solidify the diagnosis and to assess the condition of of the other regions of your digestive tract. This means having a small bowel MRI or CT scan with contrast.

Also, the joint pains and tailbone pain and uveitis mean you should have a workup done with a rheumatologist. They may be secondary to your IBD (ie, extra-intestinal manifestations), but they also might be signs that you have a separate rheumatologic condition.

After all this, an appropriate treatment plan can be formed.

Steroids are to be avoided when at all possible and only used as a last resort when symptoms are flaring badly and you need to get the symptoms under control quickly.

Stelara works for both Crohn's and UC, and for some rheumatologic conditions, so it's a reasonable choice given what you know. But as I stated above, further testing should be done.

Post Edited (beave) : 1/6/2023 12:26:14 PM (GMT-8)

I’ll just pop in to add that those of us on biological really understand the angst that comes from looking at making the decision. I remember thinking the same thing about it seeming like such a big gun and maybe if I just try this or that I’ll find a cure or treatment. But looking back from remission land the decision seems so simple and most of us wonder why we suffered so much longer while hesitating. If stellar a puts you in remission you’ll see what I mean. Listed side effects will sound horrible and scary but just remember most people don’t get them. Plus for perspective read the posted side effects (which most people never read) of any common drug or anti biotic: not much different.

Good luck in your decision. If you post your biopsy results someone will most likely be able to interpret it for you. (Not me! 😂)

Oh, by the way, Stelara isn't really more gut-specific. It's also used for psoriasis and psoriatic arthritis. Entyvio is the one that is highly gut-specific. But I'm not sure if Stelara is useful for uveitis or whether that has even been tested. Humira and Remicade have been used for all of the above (IBD, some inflammatory arthritis, and uveitis).

I have had dry eyes since I was a teenager and had to stop wearing contacts because of it. I also get headaches from dry eyes. I only recently this year started having the dry mouth. I was positive for Anti-SS-A, but not B (the number was in the 60's if I recall). My ANA was negative (only had a positive ANA once in 2008 and the rheumatologist did other test and called me saying that I had Hashimoto. The ophthalmologist ordered all kinds of test looking for reasons for the uveitis (although she said they almost never find a reason). All of the tests were negative (had HLA-B27 gene test, sarcoidosis test, chest X-Ray, RA Factor, TB and you name it). Thank goodness the uveitis has not returned.

My GI doctor did say that as long as I was not having eye issues that she wanted to use Stelara. My son takes Humira for a skin inflammation issue (that many actually correlated with IBD) that I supposedly have too, but on a more mild basis. Thank God he has had a good experience with it. His advice was very similar as what I'm reading here. No one wants to have to take these meds, but they do help people to feel better and we have to be grateful for that. I know that I want to get back to work, but I need to know that these unpleasant symptoms that I experienced in the past will not flare up again (it was the most humiliating experiences I have ever had in life).

I go see my doctor next week and I saw the approval for Stelara in my portal, along with a script for a TB and Hep test. She asked me to get the flu and the pneumonia vaccine. I have not had the flu nor the vaccine before. Is that something that most people feel is necessary before starting a biologic? My son got Covid twice while on Humira and just stopped taking it for a few months after his first symptomatic Covid experience. The 2nd time he got it, he was asymptomatic. His doctor did not advise him to take any extra vaccines prior to starting Humira.

Post Edited (RS2022) : 1/6/2023 8:03:40 PM (GMT-8)

Thanks everyone for all of the excellent advice/recommendations. I greatly appreciate everyone weighing in. I feel much better just having someone to discuss these issues with. Have a great weekend!

Hello,
Update: So I had my follow up with my GI doctor. I was approved for the Stelara. I completely forgot to ask for a copy of my biopsy, but she did state that it was indeterminate I believe. She feels like I need the the Stelara due to me having other issues (joint pain and past eye issues). I'm frustrated that I've gained weight on the prednisone. She told me that I can go down to 10mg and she will take me off the prednisone and Lialda once I get the injection. I was trying to see if I could give the Lialda longer to work. She feels like it's not enough due to my symptoms.

I asked if she would check my blood levels (always been anemic even as a child but ferritin has been excessively low as an adult and I have had 3 iron infusions in the past). So she's checking the cbc and iron panel. The resident is always inquiring about skin issues. I have had them but currently I am not having issues. The last time I had issues with my skin was after I received my 2nd Covid shot (last April). So, my hep and tB test are all done. I do have to decide about the flu and pneumonia vaccines. Flu season is almost over, so I'm not sure if I need that one now or not.

Oh, she does want me to follow up with a new Rheumatologist. So, now I have to fit that into my schedule (while starting a new remote job). Once she confirms all my blood work is fine, then I can schedule to get the Stelara.

You are right, I do need to request a copy of the biopsy. I noticed that all of my paperwork (orders for blood work, etc) now says crohn's. The notes in the portal also said "patchy chronic colitis in different areas of the colon and Rectal - Chronic proctitis - moderate activity with mucosal ulceration granuloma". This is confusing.

Also, according to my blood work, it does seem that I am still iron deficient, but not too anemic (ferritin 8; hemoglobin 11 was 9 a couple months ago).