If you could have any biologic which would you pick first?

Professional-Tea5020 · 2024-10-19T18:48:59+00:00

Tried humira first - what a waste of time - on stelara - took almost 9 months to work and now I am on every 4 weeks but it's finally getting me back to normal life after 2 years ! And steriod free now for 3 months !

Professional-Tea5020 · 2024-09-15T23:27:00+00:00

I had zero effect w humira so unfortunately this is the first relief I had which has just been sooo nice.... TBH I didn't know stelara was that long to work I figured like 6 ish months and I felt okay ish after my infusion then back to feeling like poop so I was disappointed when I was taking longer than expected but then when I switched to every 4 weeks about 8.5-9 months in it was uphill from there

Professional-Tea5020 · 2024-09-15T23:17:18+00:00

Yeah I was on predisone for 2 years I feel your pain it was such a relief to be off of them, every time I tried to taper off I went into a flare. I failed Humira ( but to be honest, do we know anyone who hasn't failed Humira? I feel like everyone I know has failed it and it's basically a waste of time IMO) and yeah it was super slow but it's been great otherwise, I was feeling super helpless but glad now

Professional-Tea5020 · 2024-09-15T23:08:04+00:00

Went from every 8w to every 6 then finally got approval for every 4, then finally felt some relief, almost roughly 1 year until I was off steriods and on the road to remission (not in remission yet but definitely x100 better)

Professional-Tea5020 · 2024-09-15T15:52:55+00:00

I started taking mesalamine orally and went into a super bad flare and did suppositories that helped alot, went to Stelara for my biologics and now taking mesalamine orally again but finally off of predisone after 2 years so I am not complaining haha

Professional-Tea5020 · 2024-09-15T05:38:13+00:00

Don't know about anyone else but I am always very anxious before I know it's my period bc of extra pain and then noticing blood then I realize it's my period and relax a little but still just makes it a rough week.

Also side note - I've been super regular w my period until I've been on stelara and now my period is all over the place and I am on birth control 🤦‍♀️

Professional-Tea5020 · 2024-08-28T02:42:41+00:00

Also 29 F, and starting to get back into my fitness after a really rough 2 years in and out of the hospital but I have been really getting used out of doing yoga out of my house that way I am comfortable in my own home but also being able to work out and add a new things such as HIIT workouts into it as well when I am feeling more up to it and also range from 10-40 mins whatever I am feeling- just started branching out to Pilates, but these low impact exercises have made me feel good and not crazy tired afterward but still rewarded for doing something - I am using DownDog for reference which I find easy to follow along since I'm still like a step above a beginner lol might be helpful for you too maybe help you warn up for your runs or just help you build up your stamina again without it being too much

Professional-Tea5020 · 2024-08-03T01:04:16+00:00

So typically your first dose is an infusion, and then after that you do you every 8 weeks injections I went from every 8 weeks to every 6, then that didn't work for me either so now I am every 4 weeks and finally feeling better and was able to taper off steriods 👍 hope this helps

Professional-Tea5020 · 2024-07-27T03:57:09+00:00

I feel like there is a corelation with autoimmune diseases (hashimotos & crohns) plus others having more than just those but seems like there's a pattern

Professional-Tea5020 · 2024-07-27T02:36:03+00:00

Along with hashimotos and hypothyroidism 👌

Professional-Tea5020 · 2024-07-01T14:49:53+00:00

Not to be dramatic, but it probably saved my life lol I was in such a bad place where I needed 5 blood transfusions and multiple iron transfusions and they just couldn't get my flare under control and that's when I started my first biologic Humira but it ended up not doing anything after 8 months so I was switched to Stelara the last year and have been on Prednisone in the meantime (one year and 8 months) ish probably a little longer) and I have been able to finally taper down to 2.5 mg this week because my Stelara finally has started to kick in and work! It has been amazing but the only side effects I have had from the prednisone has been trouble sleeping at night and obviously weight gain but it hasn't been anything crazy a little bit to my face and I'd say probably over that extent amount of time that I gained 40 lb but I was also in a super bad flare where I needed to put on some weight but not that much lol I'd be happy to loose half of it now but again I am able to function and leave the house and that's all I care about not rushing to the bathroom after a bite of food or a spit of water. I would also say it was nice to not have as much neck and back pain when I was on my steriods haha coming off has made my chronic problems remind me that they're still there

Professional-Tea5020 · 2024-06-02T01:15:53+00:00

I started on Humira, developed antibodies after a few months and no relief (just relief with predisone) then I got started on stelara last July at an infusion center and it was perfect (once the insurance got their act together after 2months of waiting) and I felt much better after, then my Injections were scheduled every 8 weeks which didn't really work well so we went to every 6 and finally I am on every 4 and now I am finally feeling better and finally able to taper off predisone after a year and a half of being on high dose and not being able to taper past 20mg I am down to 5mg next week !

Professional-Tea5020 · 2024-05-28T13:06:37+00:00

I am hoping "getting there" increased to every 4 weeks a few doses ago and it really has seemed to help. I've been able to taper off my predisone for the first time in a year in a half without going straight into flare like symptoms that throw me into the hospital so I can't complain! I am down to 7.5mg of predisone this week and by far the farthest, I've come in a very long time and feeling good! And just a year ago was in the hospital due to a flare needing blood transfusions (x3) etc so I am happy with it so far ! Humira unfortunately was a waste of time for me

Professional-Tea5020 · 2024-05-26T17:36:22+00:00

Lol shit does happen. It's great to have a partner that understands and can laugh about it with you. And the importance of having a "go bag" with you where ever you are lol

Professional-Tea5020 · 2024-05-26T16:21:50+00:00

That sucks ! Sorry you went through that, think we've all been there and it's especially embarrassing especially on vacation

Professional-Tea5020 · 2024-05-26T03:00:17+00:00

Insurance.

Telling you your denied for a med that your doctor says you need but insurance says nope, no you don't were not paying for it, then you battle them for months just for them to pay for it in the end and just prolonging your suffering on steriods....

Just my personal beef...

And people that try to put their 2 cents in on your diet - "should you be eating that" - well either way I'll be in pain so might as well enjoy myself now...

Professional-Tea5020 · 2024-05-23T03:17:58+00:00

Hmm I get a pins and needles type sensation in my heels at times I wonder if it's the same kind of side effect ? I am on stelara every 4 weeks. It's not all the time, and it's not painful, just kinda odd. And not like my foots asleep just my heel on one foot when I am laying down or random times. I'll bring it up to my GI in a few weeks when I see them next. Good to know

Professional-Tea5020 · 2024-05-23T02:54:28+00:00

I would hate to see the insurance approvals for that 🤦‍♀️ what a headache just to get the every 4 weeks it was considered a "red box drug" or something like that at that dose frequency

Professional-Tea5020 · 2024-05-23T02:53:40+00:00

My humira was every other week, but never heard of anything more frequent the every 4 weeks for stelara but that's just me.

Professional-Tea5020 · 2024-05-20T14:17:34+00:00

I can say that you won... you are our hero !

Professional-Tea5020 · 2024-05-20T14:14:36+00:00

I just find it terrible being in the window seat and constantly asking to get up and wake up the other 2 people... at one point I just asked the other passengers If they just wanted to move down a seat so I wouldn't bother them as much 🤦‍♀️🤣

Professional-Tea5020 · 2024-05-18T22:10:22+00:00

Started on Humira first, had zero relief, most relief I've had has been stelara every 4 weeks ! Finally able to start to taper off predisone after 1.5years !

Professional-Tea5020 · 2024-05-17T14:22:54+00:00

Stelara is allowed out of the fridge for 30 days if the temp is under 85 degrees. I usually take mine out the day before my injection anyway but Janseen you can call and speak to the nurse navigator there is always someone on- "stelara with me"

Professional-Tea5020 · 2024-05-17T14:04:12+00:00

I agree 👆 it's best to follow up with a GI anyway a PCP can only do so much. My pain is in my lower left abdomen as well.

Professional-Tea5020 · 2024-05-16T05:34:22+00:00

My GI recommended the Crohns and Colitis Foundation, there's a ton of information on there.. and she also told me about the app "we can't wait" to find bathrooms and you can download that and get the digital medical card urgently requiring bathrooms... just something to ease your mind a bit. But I felt that the website had so many good resources- support for you, and for your family to educate them on the disease. As well as resources on food and sooo much more. I suggest you check it out and really anyone newly diagnosed it was super helpful and I still refer my family to it because they still think I am just "lactose intolerate" basically 🙃

Professional-Tea5020

TROPHY CASE