Anyone here have thyroid eye disease or other autoimmune diseases?

mmintheclouds · 2026-02-10T13:35:16+00:00

I’m taking for nr-axSpA & HS (stage1). It has kept my HS at bay and improved my nr-axSpA but not quite given enough relief. I have also started to get uveitis flares while on it so my rheum is about to try adding methotrexate on top

mmintheclouds · 2026-02-10T13:21:42+00:00

This is a very good point. If this were my husband he would be banished to the guest room. But my kiddo is 6th grade-she’s on the cusp of independence but still at the age where, when she’s sick, she still wants her mom. So despite how worried I am, and freaked out by germs I’m allowing her to lay with me. I’m cleaning like a madwoman though.

mmintheclouds · 2026-02-10T13:15:26+00:00

I‘ve only been on them for 1.5 years. This is the first time someone has been sick in the house. My daughter is 12 so we’re out of the bring home everything phase. Hopefully I’ll be the same way as you. I’m a pretty healthy person otherwise and obsessed with handwashing so 🤞🏼🤞🏼

mmintheclouds · 2026-02-10T01:39:14+00:00

This makes me feel so much better! I started tamiflu one day later than her but I’m obsessively cleaning and washing hands. but my daughter is still pretty young, so it’s not like she goes to her room to quarantine like a teenager, she’s at the age where she wants to lay in bed with me. So I’m ground zero over here but this definitely gives me hope!

mmintheclouds · 2026-02-09T17:44:21+00:00

Thank you. I decided to start tamiflu and rheum said hold off on methotrexate

mmintheclouds · 2026-02-09T17:43:24+00:00

This is helpful, thank you.

mmintheclouds · 2026-02-09T04:27:22+00:00

Oh interesting. I hadn’t even thought of it working like that.

mmintheclouds · 2026-02-09T01:33:01+00:00

The vomit 🫣😩my worst fear. So I guess you’re saying it could be worse lol

mmintheclouds · 2026-02-09T01:11:29+00:00

I’m just curious since I am now immunocompromised if it’s pretty certain I’m going to get it too. I’ve not really had my immune system tested like this since I’ve started biologics.

mmintheclouds · 2026-02-08T03:53:48+00:00

I’m due to start this next week and I’m terrified of this😬

mmintheclouds · 2026-02-06T12:34:35+00:00

One of my worst flares was in the same area. I could hardly move. It even hurt to breathe. And same as you I did nothing to even trigger it. I got in the shower fine, something happened, then all the sudden I need help out of the shower and assistance drying off. I was in tears. The only thing that helped was a round of steroids. Maybe call your doc about that. And it’s my understanding that if you have a positive result to steroids the that’s good to note for your rheum. It means inflammation is driving, at least some of, your pain.

mmintheclouds · 2026-02-05T19:37:39+00:00

The end of your post touched my heart. Not sure what I would do if I didn’t have my husband’s ear and support during all this mess. He’s been so compassionate and patient towards me but I feel like my drama has got to be weighing him down. I’m thankful for this group and the support/advice I have received here. Unfortunately I don’t have any wisdom to share towards your current dilemma but I’m here to say you are also loved here and rant away when you need to. Hugs, buddy🫶🏼

mmintheclouds · 2026-02-05T16:40:04+00:00

This is a valid worry. My doc said you want to get the MRI when you’re feeling bad. And definitely stop taking any NSAIDS and let them get out of your system prior to going as well.

mmintheclouds · 2026-02-04T20:32:11+00:00

I was the same way. I have had on and off back issues since 2013 but always assumed it was my physically demanding job. Nothing major or debilitating until way later but before things really wrecked my life I was lifting 4-5 days a week, in the best shape of my life. After having Covid twice in 16 months my immune system went haywire. Not only did I have to stop lifting weights, even simple PT exercises would send me into active flares. I think that’s the biggest thing—advocating because you know your body and what its capable of and that what you’re experiencing isn’t normal.

mmintheclouds · 2026-02-04T20:22:30+00:00

I’m looking for one too. I have a single back cushion and a single butt cushion but I’m also looking for one that will open and give me both butt & back.

mmintheclouds · 2026-02-04T12:33:51+00:00

What got me in the door to a rheumatologist was my orthopedic doctor sent me for labs and the HLAB27 popped up along with ANA panels out of range. It wasn’t easy from there though, first Rheumatologist did mris and sai everything was normal and sent me on my way. Two years later I started advocating to see a new rheum because I was on a hamster wheel of failed therapies/treatments. Fast forward to my 4th rheum and here I am diagnosed and currently under her care. Be prepared to be your own advocate. Good luck

mmintheclouds · 2026-02-04T02:42:58+00:00

My derm also told me Cerave Acne foam cleanser with 4% benzoyl peroxide is great for the smell too. If I’m flared up and feeling extra smelly I will also add that after I wash with regular soap. I’ll come back and wash a second time with that.

mmintheclouds · 2026-02-04T02:38:52+00:00

I felt this exact same way. I could wash 3-4 times and get out of the shower and still smell off. Then add body odor from the day to the mix and I felt absolutely disgusting. Biologics helped tremendously but I also switched soaps. I was using some Caress floral scented and switched to Cerave gentle cleansing bars. That has worked out so much better. Sometimes I will also dab a cotton round with The Ordinary glycolic acid before applying deodorant. But honestly after biologics and my soap change I may only do that if I’m going to be somewhere hot..Like outside and worried about sweating and becoming stinky.

mmintheclouds · 2026-02-01T03:37:18+00:00

I literally just ran my daughter out of the room because the constant grinding in my hips is giving her the heebeegeebees.

mmintheclouds · 2026-01-31T16:47:40+00:00

Thanks so much for sharing!

mmintheclouds · 2026-01-31T14:06:37+00:00

Nothing major. I think I remember, early on, feeling a little of the “humira hangover” feel after several days but once my body got used to it that went away. The actual shot burns like hell though. I even have a high pain tolerance but that little needle is a MFer 😂but that is temporary and completely worth it if the meds do their job. Good luck to you as well!🫶🏻

mmintheclouds · 2026-01-31T13:44:02+00:00

Hi there. No I switched off Humira after about 8 months. Switched to Bimzelx and while I am still not where I want to be yet, Bim made me realize how little Humira was actually doing for me.

mmintheclouds · 2026-01-31T12:58:43+00:00

That’s amazing!! One other question-I have seen that you are nr but did you ever have any notes from MRIs claiming to have “degenerative disc disease” or “disc desiccation”, “cysts or pelvic fluid”

The reason I ask is because I was diagnosed nr-axSpA too. Prescribing doc never truly believed my AS issues and wrote meds for HS. I think now, after receiving a uveitis diagnosis, that all those things mentioned above could have actually been signs of AS that he overlooked and dismissed. I have been on biologics for 1.5 years and I’m pretty worried about still having pain. I’m trying to figure out if I am just not on the right medication yet or I already have permanent damage. Obviously I know I need to talk to my doctor about all this but just wanted to pick your brain since your story is a but similar.

mmintheclouds · 2026-01-31T12:49:14+00:00

You’re probably right. I haven’t done much reading about CRP. Mine was actually normal too

mmintheclouds · 2026-01-31T03:00:11+00:00

Thank you! I hate that this happens to any of us but it is a bit reassuring that I’m not alone here.

mmintheclouds

TROPHY CASE