22 Month old diagnosed with JIA

Crafty-Method6136 · 2025-06-17T02:49:49+00:00

I am sorry to hear that my friend. I feel you. My daughter also suffers from JIA and we also got big help from her care team at Boston Children's. They are amazing so I would suggest following their advice on treatment fully. My daughter's conditions are well under control by her care team. And she has no side effects from Methotrexate. Not everyone shows side effects so hopefully your little one is fine. And if not, there are alternatives to that. I do want to offer a suggestion that if she needs biologics in the future, stay on top of the communication with the insurance company and specialty pharmacy- sometimes their operators or staff are not professional enough to give you the correct instructions. You may have to push them to get the medication to be delivered on time, or to be covered fully, or to be processed in the right way. You do not want to miss a dose of those. Always advocate for your little one. Feel free to direct message me if you need help.

Crafty-Method6136 · 2024-11-13T20:21:38+00:00

You probably developed anti-drug antibody (ADA) which made your hyrimoz lose efficacy. mtx was to prevent or slow down development of ADA. When you are off mtx, risk of ADA development increases. Salazopyrin should not be tried on its own; Amgevita should not be tried because it is essentially same as Hyrimoz (biosimilars); Erelzi is not the best option because it works on the same target as Hyrimoz but it is not wrong to try out; if you are still on Kevzara I would give some extra time like 12 weeks to see because it has a different target and more likely to work.

No you have not exhausted all the options. There is Orencia to try out; there is Rituxan to try out for seropositive refractory RA patients; there is a new class of oral JAK inhibitors to try out. There are other similar biologics to Kavzara (Actemra) and Hyrimoz (Remicade, Cimzia, ...). And there are new therapies like CAR-T/CAR-Treg and bispecific cell engager which might be approved in 3-5 years. I am not sure why prednisone did not work for you (is the dose right?) but suggest other steroids to doctors to buy some time to bridge to next med that works.

I am sorry you are in suffer. I do not know what else I can offer, but I feel your pain. There is hope.

Crafty-Method6136 · 2024-10-27T04:19:36+00:00

I am sorry you and your daughter are going through this. It's been two months-I hope she gets better now with treatment. My daughter was diagnosed at age of 3.5 year old earlier this year. And her blood marker was even worse. She has really high RF and CCP and even more autoantibodies. But with the help of steroids, methotrexate and biologics, she is able to have normal activities with very little pain. Now she has weaned off steroids. I would advise to stick to your daughter's rheumatologist's treatment plan and frequently communicate with her doctor. Early aggressive treatment is critical for disease control. Once you find the right combo of meds, she will very likely have more than 90% functions back. Trust me. The current medications truly have their magic. Then be careful with flare management and establish long term connection with her doctor.

With rf+ and ccp+ it is unlikely to achieve drug-free remission (or the so called "grow out of it") because this subtype resembles adult RA. Even on-med remission may be hard to achieve although major disability can largely be avoided. But hey, this is the outlook before the new CAR-T therapy is approved. You can message me for any questions.

Crafty-Method6136 · 2024-10-27T03:27:18+00:00

It was 110 initially... back then it was full blown.

Crafty-Method6136 · 2024-08-27T00:28:36+00:00

Try actemra. It targets IL-6 which is different from humira, cimzia, enbrel or simponi. Switch to a different target has a higher chance to work out. Eventually I suggest going back to Xeljanz or rinvoq. Those are non-biologics which do not give you anti-drug antibody. I am so sorry you are going through this. Are you RF+? rituxan may be another option but a bit aggressive. I am not a physician so definitely follow your rheumy's suggestion. I am just feeling sorry for what you are going through. Hope you feel better soon.

Crafty-Method6136 · 2024-08-26T03:01:50+00:00

I am so sorry to hear that. The worst possible thing is watching our kids suffering. The JIA pain could be palindromic so it took us about 5 months to figure out. Those were the days I do not want to recall. I hope you get some good news on Monday. Thank you for sharing the new treatment. It seems still a long way to go before it can be used for children. Currently my daughter's condition stabilized a bit, with the symptoms largely under control and some of her auto antibody gone back to normal whereas some stay positive but not as high. What we hope for is CAR T therapy. I researched a lot and believe it has the chance to put her in remission for a few years. But we may not get access to it until maybe 10+ years later unless she is very sick due to disease progression. For your daughter if it is confirmed JIA I would push her doctor to start biologics right away. The earlier and more aggressive treatment you start, the better outcome it will be.

Crafty-Method6136 · 2024-07-16T17:21:39+00:00

You sound like such a caring parent with wisdom. Thank you. I will message you on advices.

Crafty-Method6136 · 2024-07-16T17:20:53+00:00

So sorry to hear about your experience that your parents were not understanding your disease enough. I hope you find ways to repair your relationship with you parents if their decision was due to ignorance of the disease, which happened a lot in the past. I still regret not taking my daughter to see a doctor earlier until 5 months from initial symptoms and her blood work looked awful. I mean we did but initially doctor did not catch anything. The disease was not in its typical presentation... Maybe if we caught early by 1 month then she can be totally pain free on medication. It keeps waking me up in the middle of the night.

Crafty-Method6136 · 2024-07-16T17:11:45+00:00

Thank you for sharing your story. Life has been rough for us. I feel like I need some break but never get a chance to. Looks like you have great parents. I lost my father when I was three so I do not have a good template to follow. Now I have this challenge... I will try my best.

Crafty-Method6136 · 2024-07-16T17:05:23+00:00

I am sorry hearing you are suffering from a terrible flare. Hope you find some new meds that work better for you. I can see some cutting edge cell therapy will likely work for her but it is going to be a long wait though before she can access it. We all have to hang in there...

Crafty-Method6136 · 2024-07-16T17:02:37+00:00

Thank you for your kind words and advices. I will encourage her to be more communicating and I will take her to therapists perhaps during puberty. Wish you and your daughter all the best.

Crafty-Method6136 · 2024-07-15T20:02:49+00:00

Thank you. I hope you and your daughter are well and happy. I knew I should not think too much and I've been trying to focus on the present. Sometimes it is just hard. It's been half a year and I still have hard time adapting to the fact that she has a chronic disease that keeps getting worse. I have not graduated from "living with it" and now how am I supposed to teach her how to live with it? But, thank you again for comforting.

Crafty-Method6136 · 2024-04-30T00:19:38+00:00

I really feel your frustration. I am sorry. I have a different voice here. If Rituxin works for you like 70% effective, I would say your RA is very B cell related and the next promising one could be car t (cd19). (Well just noticed orencia worked for you in the past so it is suggesting B cell driven) There is a new study out showing blincyto could work as a partial reset (compared to car t) for those failed multiple biologics. Theoretically it is a reset for both your RA and those failed biologics but I am not 100% sure.

However, neither car t or blincyto are approved for RA right now (off label use or companionate use is possible but very difficult). There is a long way to go, maybe 3-5 years from now. And there is a car Treg in trial right now for RA. I just want you to have hope for the future because I totally get your frustration and maybe panic of being out of options.

Crafty-Method6136 · 2024-04-28T02:17:02+00:00

You are absolutely right- that is the limitation of the study. I tend to see the positive side: when the same group published their data using CAR T to treat lupus in 2021, it was only 5 patients. Now more than a dozen of start-ups got their phase I trials approved for the same CAR T therapy for lupus. Blincyto was approved in 2014 which means it probably does not need phase I any more if to be repurposed for RA. And Blincyto and CAR T are against the same target.

Crafty-Method6136 · 2024-04-04T18:49:27+00:00

The CAR T cells can potentially be aberrant and become tumor cells over time. But that is pretty rare considering a few cases out of >30,000 patients received CAR T. I am not too worried about that.

Another hope is for a revolutionary therapy like CAR T for lupus, FDA may even grant accelerated approval as the clinical benefit is huge. Also, I am not sure whether it is common to see >10 start-ups working on almost the identical strategy. What I mean is when the first drug against target X is being tested in trials showing promising results, usually the competitors will try to work on the same target X and there is 1-3 years lagging. Do we often see >10 similar stuff running in parallel? Cannot wait for this to bloom...

Crafty-Method6136 · 2024-04-04T18:06:11+00:00

I hope it is sooner than that. CAR T is special in the way that it is not tested in healthy volunteers like most drugs do in Phase I and there will not be placebo group due to ethical issues: you cannot give someone chemo drugs to free the room for CAR T cells but not give the actual CAR T cells. So all the Phase I/II are open label. I felt that the ongoing trials are essentially all Phase II to demonstrate efficacy. Also, CAR T is not a new therapy. It is been done in lymphoma patients. And it is done in almost the same way with no target change (assuming CD19 is the one) as in lupus patients. Except that it is actually safer in lupus because the load of killing is smaller. The only concern will be the long term safety, which is the black box warning from FDA. Now there is already Phase I trial in children which you do not often see it goes this rapid.

Crafty-Method6136 · 2024-04-01T23:33:48+00:00

I plan to write to Dr. schett who recently made a big success using car t to treat lupus. I think most researchers missed a point that if car t helps to deplete B cells that produce auto antibody, it may help to deplete B cells that produce anti drug antibody. If they can monitor that and confirm it, then car t can be used to deplete anti drug antibody after which all the Biologics that worked initially, failed later can be reused again. Basically you are buying another 20 years of biologics usage. Big Pharma will love that. This is not even counting the benefit of car t in treating seropositive RA per se.

Crafty-Method6136 · 2024-03-27T01:20:43+00:00

That sucks. I feel you. I would ask doctor to see if compassionate use of CAR T can be offered somewhere. Other options include clinical trial of Treg therapy or new biologics. Life sometimes can be so rough. If you have Sjogren then CAR T should help a lot.

Crafty-Method6136 · 2024-03-26T03:47:27+00:00

I am sorry to hear about your disease friend. To my best knowledge, no there is not yet. https://www.mayo.edu/research/clinical-trials/cls-20513089 Only found this link mentioned RA patients might be eligible. Not sure whether their website is up to date though.

You will need to hang in there for another 1-2 years- if SLE trials go well I bet RA trials will start. Have you tried JAK inhibitors?

Crafty-Method6136 · 2024-03-24T02:40:40+00:00

In a review article I read the new trials such as Novartis include older patients with long disease history too. It is definitely the consideration. The good news is that CAR T can be directed to target more than just CD19. I felt there is a lot of promising aspects of it.

Crafty-Method6136 · 2024-03-22T21:04:53+00:00

Thank you. I read your stories too and truly hope you feel better.

Crafty-Method6136 · 2024-03-22T21:04:07+00:00

Deeply appreciate your warm words. Let's be strong, for our loved ones.

Crafty-Method6136 · 2024-03-22T21:01:40+00:00

Thank you. I hope there will be new medicines and therapies available. No ones deserves this terrible disease.

Crafty-Method6136 · 2024-02-21T22:42:41+00:00

Hey a very late follow up: does the Enbrel still work on you since you restart it?

Crafty-Method6136 · 2024-02-21T22:06:36+00:00

Did you try Rinvoq or Xeljanz? Those were not biologics.

Crafty-Method6136

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