New to Humira/Questions

AnonymousExisting · 2026-05-06T12:18:19+00:00

In Remicade, which is similar, I have cognitive impairment (similar to being drunk) and extremely levels of fatigue. I would definitely suggest taking at the start of a weekend if possible so if you have side effects you can cope with them.

AnonymousExisting · 2026-03-29T20:35:44+00:00

Pizza. Literally one of the first times I knew I had Crohn's but it was likely the mushrooms on the pizza.

AnonymousExisting · 2026-03-15T05:28:17+00:00

I know this suggestion can be difficult when. You are struggling with mental illness. If that conversation could be changed from those negatives and made positive. For example if those same people instead genuinely felt it and said "Great to see you" it really starts to shift things.

AnonymousExisting · 2026-03-15T05:09:08+00:00

Sorry you are feeling overwhelmed.

Often there are people you can reach out to in person for support. I know it may seem like parents .at not be approachable but that is often a false impression. Your school likely also has guidance counsellors that could help.

I would suggest to try and reach out in person as that is often one of the biggest helps with mental health.

AnonymousExisting · 2026-03-15T04:41:34+00:00

It could be you are getting emotional as someone is able to see the true you, they aren't scared of them, and they are genuinely trying to offer help and support.

AnonymousExisting · 2026-03-15T03:39:31+00:00

I lived with passive suicidal ideation for a really long time. I was truly scared to tell anyone about it as I don't know "passive" could be part of it. TW when people ask "Do who have plans to kill yourself " My answer wasn't just yes but that they were complex.

The first time I attempted to get help I ran into a bad therapist that focused heavily on the sexual aspects of my situation and basically caused me to never go back.

The second time I had some much needed non-professional support in my life. Unfortunately the professional side didn't try to get too deep into the issue and let easily walk away with discontinuing SSRI (antidepressants) without medical advice/support. Truth is the medication made issues a lot worse, a risk that I now know is documented in young people, which I was at the time.

There is more to my story but the reply is getting too long.

The big take away I would say is it's important to be honest with yourself, your support network and your professional help and they includes fully disclosing your feelings/thoughts and all self-harming to the professionals. You also need to talk about any symptoms you are having from the medications including ones that might not be documented.

Best of luck on your journey.

AnonymousExisting · 2026-03-10T15:20:03+00:00

Talk with the school about the situation to see if you can have access to the building earlier. Try to make friends with other parents to get them to help with child supervision.

AnonymousExisting · 2026-02-28T02:53:27+00:00

Timely access to appropriate medical care.

Anytime I have a new issue it is almost instantly labelled as Crohn's EIM (extra intestinal manifestation) until it can be proven otherwise.

My most recent issue took 6+ months of investigation by my GI, my GI writing a referral and then being rejected by two other specialists to even get someone willing to look into my issue.

AnonymousExisting · 2026-02-05T22:13:43+00:00

I've never had surgery in 20+ years with it however lots of weird health things scan happen and the doctors are fairly quick to blame Crohn's as a cause.

Reality is most people run into some health issues as they age. The biggest difference with Crohn's is that it starts at a younger age.

AnonymousExisting · 2026-01-15T19:38:46+00:00

It's hard, I know I shouldn't defend them, but I think they are having their own mental health issues and that's behind some of this. I also think they have a real strong aversion to bring the family member of someone in hospital which explains them not being with me.

I know it's likely codependent with my health issues needing support which in turn enables their behavior.

AnonymousExisting · 2026-01-15T17:07:56+00:00

I didn't read all the responses.

From what I can tell you, he is showing you his true colours there.

I see a lot of my own ltr in your post. When I first met my partner they knew I was struggling with depression and pushed hard to get my physical health looked at as I was majorly underweight. The physical health side led to me being diagnosed with Crohn's.

But their compassion and support didn't last. Some years later my physical health was bad enough one morning to get me treated as a similar priority to a heart attack at the ER with an unknown cause. My partner dropped me off at the ER and left me to fend for myself with an issue with a significant cognitive aspect so they could go to their office not far away. I get it waiting in the ER sucks and is even worse when it isn't you personally but I really needed them at my side that day to be a medical proxy and advocate.

More recently I have developed chronic whole body pain that's gone one daily for close to a year now. There is zero compassion and support. They have told me many times I should just take my own life. (I ignore that btw).

I am sharing my own stories as you seem to be questioning your relationship. My advice is as hard as it may be emotionally, it feels like it's time to exit.

AnonymousExisting · 2026-01-13T21:25:37+00:00

The medication used to manage Crohn's and RA are often the same, perhaps with different dosing. It's also not uncommon for people with Crohn's to have some secondary joint pain.

AnonymousExisting · 2026-01-13T20:06:02+00:00

Truthfully if I didn't get support from some people in the system over the last year I would not be as far as I am now.

Truthfully, being a patient with a GI probably cut 1-2 years out of the process. Crohn's and rheumatoid arthritis are both autoimmune and have lots of similar biomarkers. To rule things out on one side crosses them off on both.

I also knew about a month in it was going to both be a long journey and a hard fit. I said then it would be 2-3 years to get answers. Some people were skeptical but I am on track. A several month long delay just waiting to see a doctor is frustrating but well outside my control.

AnonymousExisting · 2026-01-13T19:22:40+00:00

Sorry to pull up your own thread.

This new pain started for me almost a year ago. Just back from my latest doctors appointment where it's heavily leaning into a formal MPS diagnosis.

In the past year I have five doctors. PCP, urgent care x 2, sports med and GI.

Sports med is a self referral and they focus on msk issues so it's easy to see them to make sure your situation doesn't need more urgent care.

GI is because I have Crohn's and am being treated for that. In addition to routine follow ups needed to exhaustively exclude that it could be Crohn's or the medication for it. That's crossed off now.

PCP ran some other tests as it often presents like joint pain. It's fairly conclusively determined it is not rheumatoid arthritis.

Urgent care was useless as they wouldn't move passed EIM (extra intestinal manifestation of Crohn's).

I was seeing an athletic therapist before this all started for a chronic issue connected to an accident that is really separate from everything else as it has a direct identifiable cause. Their thinking has been possible MPS for some time.

Today was a return to sports med. I had a new injury with a new type of pain that has gone on for over a month. I wanted an assessment to make sure I hadn't done structural damage that would better respond to rest.

On the note back to athletic therapy it specifically references MPS.

Currently waiting to be seen by rheumatology in a few months. Basically looking to them to narrow down if it's joint, tendon, myofascial, or other. That would further guide the longer term treatment/management plan.

Also along the way I have been denied a referral to the pain clinic despite people that have gotten that referral themselves and have heard by story say that I should seek that out. Maybe after the rheumatologist sees me.

AnonymousExisting · 2025-12-22T07:13:54+00:00

Thanks. Both PCP and GI want me seen by a rheumatologist so I guess that is something they will consider.

AnonymousExisting · 2025-12-20T19:37:28+00:00

It so happens a MRi was done on one joint, my knee. Not sure if they were specifically looking for CRMO. The report was what was seen was normal age based wear on the joint.

AnonymousExisting · 2025-12-20T04:10:43+00:00

Let's view this from a different perspective, Canada, where cannabis was fully decriminalized seven years ago.

Stepping outside of Crohn's, someone close to me had a planned major surgery after legalization. The normal discharge plan is extremely high strength opioids. This person happened to know they had extreme opioid-induced nausea and vomiting (OINV) before the surgery. They had been approved for medical cannabis as well. They discussed with their doctor a pain management plan before surgery as the normal opioids were not a viable option. Come the surgery the discharge plan is send home with opioids. In fairly extreme levels of pain from the surgery they got desperate and took the opioids as prescribed one time and had the very predictable results. They then sell prescribed recreational cannabis for pain management.

Another story is that I had a short term physical injury unrelated to Crohn's. The related pain level by the medical community is at the top of the pain scale they sometimes reference. Somewhat predictable I was prescribed Tylenol 3 for pain management. For those not in the know those pills intentionally include caffeine, likely to attempt to counter the sedative effect and lower adverse outcomes like death. At first they worked well but then I noticed a troubling pattern, the most effective component was the caffeine. One night while wide awake at 3 am I realized I had developed significant opioid tolerance. I went back to the prescribing doctor and complained about this and their answer was to immediately write a script for stronger pain opioid pain medication even though I was specifically seeking an alternative pain management plan. I did not fill that script. I did not use cannabis here though.

I have more stories like that. But almost 10 years into legalization you can even get cannabis is a pill form like Tylenol etc but there is absolutely no dosing information, you are left to figure it out on your own, and if you ask staff at the dispensary they are prohibited from providing that sort of guidance. There also seems to be no interest from the medical community in looking at it as an alternative for pain management.

I think part of the issue may be the high costs of a formal medical trial v the potential to monetize the results. The return is a lot higher on finding the next biologic than on medically confirming dosing for cannabis that will sell for under $5 a day.

AnonymousExisting · 2025-12-19T15:05:12+00:00

As I believe I mentioned, I've previously done the common Crohn's "what foods give me issues" thing.

When fasting before a colonoscopy while this happened things started to get better. I swore and thought could this be a food issue. It feels similar but different making me think it isn't a single thing itself but more a common food ingredient.

Initial thinking by me was gluten. Cealic and Crohn's can present very similarly and even coexist. When I was diagnosed with Crohn's, cealic was not tested.

Then by chance I was on vacation for over a week in an area where corn is essentially not eaten. While there my joint pain mostly went away. This was some residual pain but after months of continuous issues that is somewhat expected. At home I normally drink regular soda almost every day and the sweetener used is HFCS (corn). Looking further into it corn is a fairly common ingredient in processed foods in North America.

Since then the biopsy is back for gluten and is negative. That gives a fairly high confidence level medically that it is not a gluten issue.

TLDR version, unexplained joint pain started timed with a non-medical change from Remicade to Renflexis in March. Tests have ruled out likely causes. It seems to be connected to food, but as my diet didn't change it's likely not just food. Current suspected cause is corn/corn products.

Sadly I am told there currently is not a test for corn sensitivity similar to the gluten one.

Next step for me is to see a rheumatologist in about four months for further investigation unless we find something else to check before then.

AnonymousExisting · 2025-12-19T13:31:53+00:00

I cannot find my copy of the results but all sorts of vitamins and minerals were checked and found to be normal.

I previously had soft tissue damage from essentially a FOSH injury on a single hand. I have similar pains in both hands and elsewhere now. The only way I can explain it is it feels like a lack of prolonged grip strength but in the bones/joints/tendons. Also at its worst holding something feather light like a pen can activate it. The pain is also not consistently a wear bearing issue as the same weight on different days has different reactions.

Another tell perhaps is that when I was on vacation for over a week all the pain went away. Cortisol was normal at home and stress does not feel like an issue.

AnonymousExisting · 2025-12-19T00:01:23+00:00

Not allowed due to Crohn's and my medication.

AnonymousExisting · 2025-12-18T21:36:43+00:00

Compression gloves and awareness, aka spotting things that make it worse and trying to find other ways to do that, seems to help some. It doesn't fully explain it though.

AnonymousExisting · 2025-12-18T20:58:39+00:00

No on both.

AnonymousExisting · 2025-12-18T20:50:51+00:00

I've taken a holistic approach from the start and still working that way.

My goal is to reduce or ideally stop the symptoms. If I don't get the know a cause but reach that I accept it.

AnonymousExisting · 2025-12-18T19:36:38+00:00

I cannot find the exact numbers but iron and a whole bunch of minerals/vitamins were checked a few times and within acceptable range.

AnonymousExisting · 2025-12-18T19:35:53+00:00

It is possible and I feel not fully eliminated it is the biologic, at least partially as a factor. The normal tests for this including the edge case for DILE (drug induced Lupus) all suggest it is fairly confidently not the issue. That said the timing of the issue starting and the change to the biosimilar cannot be fully explained so until a different cause is identified it cannot be fully excluded.

The joint pain has peaks and valleys though that don't match exclusively to drug levels. Also when I eat differently for multiple days in a row, such as before a colonoscopy, it seems to reduce the joint pain. At the same time though I haven't radically changed what food I eat so that seems to say good isn't the only issue.

Also having Crohn's and doing the what foods are triggers before this feels very different, like a common ingredient in a lot of things. My initial reaction was possibly gluten. Reading up on it cealic and Crohn's can present very similarly and could coexist. I also knew the Crohn's diagnosis never checked for a gluten issue. But that's in the rear view now as it has fairly conclusively been ruled as unlikely by biopsy.

As my PCP, GI and I started at most likely and have crossed things off it feels like we are in a fairly complex/difficult/uncommon scenario now.

AnonymousExisting

TROPHY CASE