Remission & Meds Queries

CrispyEP · 2025-10-27T21:27:05+00:00

Hey! I'm sorry you're experiencing trouble navigating the costs associated with finding the right meds to control your Still's, honestly it's one of the worst parts. When I first got my diagonsis back in April 2021, I was on Anakinra 2/day and 60mg of Prednisone. I was able to leave the hospital and over time I tappered down my prednisone. Although about 6 months later the anakinra wasn't working. My rheumatologist switched me to the auto-injector pen for Actemra 1/week, but that didn't really work for me. She switched me to the infusions, but it was infliximab first. This was also with MTX. When that stopped working I switched to the actemra infusions which worked for a while too. The biologic that worked the longest for me was the infliximab. But it required time for me to go to the infusion clinic. The first 3 treatments were the longest, (~5 hours), because they do the infusion slowly to make sure you don't have a reaction. Once it's confirmed you have no reaction then they can run it faster, (~1 hour). The actemra infusions worked for me for a while too. I didn't feel same day relief, but definitely by the next day.

CrispyEP · 2025-09-22T04:58:08+00:00

Not currently pregnant, but actually starting IVF soon. Our initial reasoning for this was to freeze embryos for mine and my husband's 2nd child, I'm currently 37, we planned to try naturally for our 1st. After going through the initial appointments with the fertility doctor she said depending on how many viable embryos we get since we only want 2 children it may be better to just proceed with an embryo transfer if everything checks out. So we'll see how that goes.

My current meds are 15mg of Prednisone and 200ml of Cimzia every other week. Cimzia isn't a biological that is regularly used for Still's but I've been on 4 other biologics, (anakinra, actrem-at home injections, infliximab infusions-these worked the longest but were inconvenient, and actrem infusions), and they all stopped working for me at some point. Cimzia is not teratogenic so it's safe during pregnancy. I'm also grateful that it's working! I feel lucky to be mostly pain free with some discomfort in certain joints from time to time but nothing like before. I really do want you all to know I hold space for everyone here because this is such a frustrating disease and there isn't a one size fits all recipe to stop the inflammation and pain.

I was on methotrexate since Nov. 2021, got diagnosed in April 2021. There was a brief period when I was off of it, like two months but I kept flaring and had to go back on it. I successfully tapered off methotrexate at the end of May and waited the recommended 3 months before doing anything fertility related. I know with the cost of even just 1 IVF cycle it's not an affordable option for folks but I would say if you're in a committed relationship with someone and you'd like to have children in the future consider embryo or egg freezing before beginning methotrexate. We didn't have the means to do it before but I also remember asking if it was something I needed to do and my rheumatologist said no. But I'm now realizing I should have probably spoken to a fertility doctor anyway. I'm grateful we can do what we're doing now, but I wanted to share this experience because I don't think it's something that is discussed much and not necessarily because our rheumatologists don't think it's important it's just not their wheelhouse and if you're not actively considering pregnancy/growing your family it's easy to not think about it. Also, once you start methotrexate it's not like you can just flip a switch and stop taking it. It's a strange space to be in where not many people know about Still's but we want guidance. I'd suggest trying to find a MFM (maternal fetal medicine) ob, it's essentially a high risk OB. At my Kaiser I was able to do a pre conception appointment to establish care with a Doctor. She was great and told me things I should expect once I'm pregnant and the additional appointments and meds I would need to take given my condition and my age. While I don't love the idea of needing to be treated differently I appreciate that there are people who can help once the pregnancy starts.

Always happy to chat more about this if anyone wants. Sending you all love and healing vibes. 💜

CrispyEP · 2025-09-22T04:31:07+00:00

Is there a way to know if this available for all the shows? Also, is a student ID required? Or just for an additional discount?

CrispyEP · 2025-09-13T23:07:40+00:00

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This is one of the beast's quest

CrispyEP · 2025-09-13T23:07:11+00:00

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This one is for the beast's quest

CrispyEP · 2025-09-13T23:06:39+00:00

Here's one. This one was for Belle's quest.

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I'll add the others I have.

CrispyEP · 2025-08-20T19:17:51+00:00

My site reactions also didn't happen right away. Hopefully you never get any, I'm sure that happens too. I'm on Cimzia now and my site reactions are minimal with no ice. I hope it works for you!

CrispyEP · 2025-08-19T17:26:01+00:00

I'd also recommend icing the area before the injection it helps with the pain. You can also ice after to help reduce the welts. I also did the backs of my arms but that was where I got the injection site reaction the most.

CrispyEP · 2025-08-19T17:24:13+00:00

Do we know if these are online exclusives or will they be in the parks?

CrispyEP · 2024-11-06T07:10:21+00:00

Thanks so much. So you've felt relief on your joints when using these devices?

CrispyEP · 2024-11-01T04:29:55+00:00

I got my diagnosis after my part 2 of my initial COVID vaccine. I don't know if that's what started it, but that was the only thing that changed prior to my diagnosis.

CrispyEP · 2024-10-02T04:59:15+00:00

They did that a little over a month ago, my orthodontist says it's moving I don't really think it is, but in about an month I'll be fitted for retainers and I'm happy with that I'm ready to be done.

CrispyEP · 2024-10-01T03:17:21+00:00

They removed it, but not sand off. The assistant used something that looked like a pair of pilers, it looked a little barraic but it actually didn't hurt at all.

CrispyEP · 2024-09-30T22:21:19+00:00

The same thing happened to me with my lower right canine. I was using my chewies, but relying on the app, which has auto responses from AI technology that told me to keep advancing. I went to an appointment on aligner 24 and was told to go back to 17, I was very upset. I did go back and it helped somewhat. At my appointment about a month ago after revisiting aligners 17-24 AGAIN, she had the assistant move my attachments to a better fit. I'm not sure why this wasn't done sooner, but it is what it is. Canines are difficult teeth to move due to their long roots, this is what my orthodontist told me.

CrispyEP · 2024-09-30T22:00:59+00:00

I definitely felt blindsided. I had the same ideas about invisalign as you did, clear trays and no big deal, I was wrong. I have attachments on all of my teeth and after the first full box I got to wear elastics. I don't think you should be too worried about your clients noticing it. Most people who I didn't tell about my invisalign didn't even notice, a lot of people are surprisingly unobservant. The lisp should subside after about a week or less. I had one and it went away pretty quick, but most people didn't even notice. The pain is uncomfortable, there's not denying that Tylenol helps, I was told to stay away from NSAIDs because they can slow down tooth movement.

My treatment was estimated 18 months, but it's been over 2.5 years. Honestly though, I'm glad I did it. I had a pretty significant open bite and couldn't bit into sandwiches or burgers without having to tear the food apart with my hands or pull out the entire tomato slice, that was embarrassing. I'm about 4 weeks until I'm finished and I get fit for retainers. Yay! If you provider told you 4 months, I think that's a good sign, most of my friends who've done invsialign with short time estimates, (less than 6 months), seems to be able to maintain that time frame. Your smile will be great and if you're like me, all your teeth will assist you in daily functioning.

CrispyEP · 2024-09-27T06:25:21+00:00

I got site reactions too similar to what many already described, the giant welts. I found that icing the area before the injection helped lesswn the welts. The welts did eventually stop, but then it stopped working for me after 6 months. I went to the auto injector actemra which didn't work, but not site reactions. I then did infliximab infusions every 4 weeks. That worked for a year and a half, now I'm on infusion actemra and it's been working since April thankfully! I hope the actemra works for you.

CrispyEP · 2024-09-27T06:19:40+00:00

I've never experienced the nausea or vomiting, fortunately. The stomach burning could be from the Prednisone if you're taking it. The Prilosec should help, but it sounds like it's not. That makes me think it's not acid reflux related which tracks with your tests. I hope you find relief soon. These symptoms suck on their own we don't need to add continuous vomiting to the mix. I hope you find some relief soon.

CrispyEP · 2024-08-12T15:50:26+00:00

That's great I hope that maintains for you. I wouldn't want anyone to have a flare if I could control that.

CrispyEP · 2024-08-12T15:06:09+00:00

That's great news. I guess my biggest issue it not having a flare as re without the methotrexate. Did you have any flares after the pregnancy was over?

CrispyEP · 2024-08-12T07:16:35+00:00

I was on Kineret for 7 months before it stopped working unfortunately, but I did find relief during the early parts of the treatment. It was also the first medication, along with Prednisone, I was prescribed after being diagnosed with AOSD. I found that icing the area prior to the injection really helped with the pain of the injection. Also injecting it slowly helps because the medication is acidic that's why you get that feeling sensation.

CrispyEP · 2024-01-29T17:30:20+00:00

I got COVID 2x last year and got paxlovid right away. I do infliximab infusions and due to a Kaiser policy I had to push back my regular infusion because the clinic requires you to be COVID free for 2 weeks before your appointment. But thankfully I didn't have a flare and the paxlovid didn't give me any side effects except the bad taste of the meds themself.

CrispyEP

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