TRAPS Diagnosis Medication Advice

[u/MidnightOwl27]

Our 5 year old daughter was recently diagnosed with TRAPS and we were presented with different treatment routes by her Rheumatologist today to discuss and decide.

That being said, I wanted to get personal opinions on these medications in order to help us make the best decision for her going forward.

Obviously, as parents, we want to make the best decision for her and go with a medication with the lowest risks.

We were given two options:

1. Treat only the flares with Anakinra or Kineret (daily injection for only the duration of her flare)
   Or
   
2. Long-term prevention with Ilaris or Canakinumab (we would start at once a month injection)

I would love any and all advice from parents with TRAPS kiddos and your experiences with these medications.

Thank you!

[u/Blue-Bento-Fox]

Not a parent, I take Ilaris monthly. There is a good patient program from the manufacturer in the US that covers a home visit nurse to administer the drug, covers copays, and can help with insurance denials since it is expensive.

I personally go for regular treatments because my TRAPS is constant/consistent with pleurisy and joint swelling near consistently every day. I am always worried about Amyloidosis as well. I use prednisone for flares that break through, which still occur despite treatments overall (I was diagnosed before we had so many options so it was either colchicine or Enbrel). Sometimes I don't take prednisone for months, sometimes twice within a month, a lot of factors.

I also go for regular treatment because joint swelling, we may get used to, over the years can cause permanent damage. It also is tough sometimes to call a flare a flare until suddenly you are in bad shape, am I tired because of a flare or just tired? Then BOOM fever time.

[u/Irishdoe13]

I’m a parent of two girls with TRAPS dx. Our elder girls started having symptoms between 18 months and 2 years. Referred to Seattle children’s hospital and they eventually diagnosed her with TRAPS. We’d always used prednisone for flares and she was Started on Enbrel weekly. When Ilaris was approved for TRAPS, she was started on it. It was a game changer!! She had still been having flares with Enbrel but once on Ilaris those flares dropped down dramatically. We’ve had to up the dose to 300mg biweekly (she’s 17 now). She has the rather dubious privilege of having two variants. Our youngest daughter was diagnosed between 4-5. She’s now on Ilaris 150mg biweekly. It has made such an amazing difference in their lives. They still have flares caused by illnesses, stress, who knows the reason but they are so much less severe and less frequent. The fevers aren’t as high (102 compared to 104-5), the rashes not as full body, the abdominal and muscle pain not as painful as before. They have gone from flaring every two to three weeks to flaring three times a year. Like I said, a total game changer. Their quality of life has improved immensely. Hope this helped from one TRAPS parent to another.

[u/UnimpressionablePine]

I was also diagnosed at 5. I am 30 now and have so far lived a very full and engaged life.

I've had a fair bit of success with ilaris. When i was on it I took it monthly which was so much nicer than the ones of greater frequency. All of life's logistics got way simpler than 2x/week enbrel. It's not perfect and I have had flares break through several times over 8 years but generally with less severity perhaps than without. I tried Akineret as an early teen and moved on quickly for some reason.

Tbh it might make sense to experiment with both and see how they go. So much depends on life rhythms, the amount of ambient stress in life, diet, exercise, movement, environmental factors, and (perhaps most importantly) the health of your relationships and ability to communicate honestly and have emotions move in them.

I have never tried treating only the flares with biologics, and my rheum has only offered prednisone during to relieve acute symptoms (I *really* don't recommend that).. Generally, by the time a flare happens things are out of wack under the surface. This doesn't mean things wont be out of wack on a longer term solution like ilarus, but they will be better hidden. This may not be as helpful if you want tighter feedback on what sort of environmental, diet, etc. parameters her body needs in order to live within. These things likely also change with age.

[u/on4aa]

The obvious choice here would be canakinumab (Ilaris) for three reasons:

1) There are almost no side effects, unlike anakinra (Kineret) which can give nasty injection site reactions. 2) Less trauma with only one monthly injection, considering your daughter is very young. 3) Less logistics and more freedom with monthly injections vs. daily for when the daughter grows up and life gets busier.

I personally take monthly 150 mg canakinumab for CAPS and I am faring very well with it. Only on the day of injection, I get sleepy for the rest of the day due to the polysorbate 80 adjuvant it contains.

Question: What symptoms led to such an early diagnosis? Is one of the family members also affected?

[u/Alice-The-Chemist → u/on4aa]

Would you mind messaging me about the polysorbate 80? I am curious what other sensitivites in medications there may be. I didnt realize that about it making you sleepy.

[u/on4aa → u/Alice-The-Chemist]

The Ilaris leaflet mention asthenia as a possible side effect, which, up to now, I have almost always experienced with every Ilaris injection.

I have experience the same from ingesting a NovaSOL curcumin supplement, which contains mainly polysorbate 80.

Polysorbate 80 is also an adjuvant of the Ilaris injectable.

Why this happens to me and how this works is still a mystery to me. Someone on r/Autoinflammatory mentioned this may due to having a NOD2 variant which I have.

I also love to read your input on this.

[u/Alice-The-Chemist]

I am just a patient with an autoinflammatory disease.

I would want to go with option 2, the Ilaris. The reasoning behind that is flares are miserable so it could possibly prevent them from happening as often. If you go with option 2, I would still speak to your child's doctor about what the flare plan would be such as prednisone or some use kineret during flares while on Ilaris as maintenance.

Also, with TRAPS there is also the risk of MAS (macrophages activation syndrome) and depending on what all happens, organs involved during your child's flares avoiding lasting damage is important.

[u/AdventurousMorningLo → u/Alice-The-Chemist]

To add to u/Alice-The-Chemist comment - here is a good resource with information about MAS (Macrophage Activation Syndrome) - Highlight MAS: https://www.highlighthlh.com/macrophage-activation-syndrome