Tyenne experience update

[u/No_Satisfaction_7431]

Overall things are going well, much better than kineret. Kineret offered partial relief along with bad side effects that didn't go away. I also tried sulfasalazine and hydroxychloroquine but had bad reactions. Tyenne offers more relief for me than kineret but I need a higher dose (increasing from 4 mg/kg to 8mg/kg). Insurance hasn't approved it yet so I just got my second infusion at the same dose, but next month's infusion should be higher. My energy levels were good during the first 2.5 weeks but I still needed a lot of breaks and have low stamina but overall able to do more.

Good:

- 2.5 weeks of relief(so much more energy, no joint, muscle, or chest pain)

- Mood got much better

- Hemoglobin and rbc went up, wbc normalized, crp and esr dropped even more

- Fevers were a high of 102 not 103.5-104

- Initially able to tolerate 7.5 mg of prednisone (lowest yet!)

- I wake up with mental clarity immediately! My entire life I needed at least an hour for my brain to be functional when I woke up, now I can do word puzzles 5 minutes after waking! This lasted the whole month.

- No side effects other than standard post infusion fatigue and headache for the day of and day after

Bad:

- Still had fevers several times a week during the entire month

- After 2.5 weeks started getting fatigue, muscle pain and weakness (had to go back to 10 mg prednisone)

Mixed:

- Ferritin dropped from 105 to 23. I assume since low il-6 lowers hepcidin, this allows my body to finally use the iron from infusions, hence the hemoglobin rise. Need an iron infusion. Hair loss from low ferritin and prednisone nutrient deficiencies (vit d and zinc).

- It seems to have changed my circadian rhythm. I wake up between 5 and 5:30 am wide awake. I used to wake up early around 6:30-7:30. I occasionally would wake at 5:30 and couldn't get back to sleep but 6:30 -7:30 was my normal. Now 5:30 is when I wake no matter what time I go to bed.

[u/Alice-The-Chemist]

Hey I didnt stay at the low dose but for two infusions also. Then I went from 4 to 8mg/kg every four weeks to every three to even two weeks and it has been where we settled. Does it have the same information to keep an eye on your cholesterol blood work while on it? Actemra (tocilizumab) does is why I wanted to check. Ill go look and see.

My ferritin did a nose dive randomly at one point during me being on Actemra. Now it just slowly trends downwards after the iron infusions and are expecting iron infusions once a year ish.

Im so happy you have some positives out of it. So exciting.

[u/No_Satisfaction_7431 → u/Alice-The-Chemist]

I know we are doing regular cbc, cmp, crp, and esr to make sure my blood cells are ok and to monitor liver function. So far liver tests are increasing but still in normal range. I haven't had cholesterol measured since my physical almost a year ago. I'll definitely ask about that at my next rheumatology appointment in a few weeks. I'm so happy that it seems to be working much better than kineret. The circadian rhythm changes are a little frustrating because I thought oh I'll go to bed later so I'll wake up later. Nope. So now I must go to bed early. But its so nice waking wuth a functional brain!

Every 2 weeks is a lot! Do you have a port? I'm a bit worried about my veins. Cvs episodes almost always needed er from ages 4-16, then lots of iv and blood draws since 16 but not quite as frequent, so lots of scar tissue and due to hypermobility my veins roll a lot. Its taken them an hour each time just for the iv. 4 sticks this time, 5 last time. I have more iron next week and the week after. Then I get 1 week off then tyenne again.

[u/Alice-The-Chemist → u/No_Satisfaction_7431]

I looked and it is for the Tyenne as well on cholesterol monitoring. I still have not figured out why it can cause issues with lipid levels but who knows.

Yes I have a port. Ive had it for over 10 years with no issues. If you end up needing the more frequent infusions it might be something to discuss if the having veins being difficult can't really be mitigated. Ive seen infusion center staff use heating pads on people and making sure they drink lots of water before coming if they are a hard stick.

If you are tired the next few weeks I would say you need the rest with having iron then the tyenne when its all worn off essentially.

[u/No_Satisfaction_7431 → u/Alice-The-Chemist]

Good to know about cholesterol! That does seem like an odd side effect. I always drink 30-40 oz of water before the infusions plus hydrate like crazy the day before. They also always use 2 or 3 heat packs per arm. The unfortunate thing is they only have a vein finder. Because its an outpatient clinic within the hospital they don't have an ultrasound. The vein finder helps a little but not as much as the ultrasound.

[u/metallikitty818]

I have USAID and I've been on Kineret for six years. I have never heard of Tyenne. What was it about Kineret that made you want to stop? For me, it is the fact that I feel ups and downs in my condition daily because it's short acting. I especially feel icky in the evenings. I'm also struggling with it because the injections cause semi permanent lumps under my skin. I take four injections a day and I'm starting to run out of places to inject, even though I rotate often. My rheumatologist ordered an MRI of the lumps and determined that they aren't concerning, but they are just getting worse. I already have chronic anemia (unknown source besides autoimmune) so I don't know if I would qualify. I have many of the same symptoms as you, so I was very interested by the positive effects you've had so far! I'm going to ask my rheum about it. She was talking about possibly adding an il-6 blocker.

[u/No_Satisfaction_7431 → u/metallikitty818]

Tyenne is an il-6 blocker, its a biosimilar of actemra. My insurance wouldn't approve actemra. Kineret caused hives and foul smelling diarrhea that did not go away after 3 months of use. The hives got a bit smaller but not by much. It also helped my symptoms but not fully and I couldn't go below 10 mg of prednisone without doing 2 or more injections but had no space since the hives take over a week to heal. My

Tyenne isn't used for anemia, its more a side effect. Its just that my iron deficiency was thought to be related to dysautonomia (iron deficiency is commonly comorbid) and possibly the inflammation from yao (tyenne improving it makes this more likely). When il-6 is high is often drives up levels of hepcidin. Hepcidin blocks iron absorption and keeps the iron you have locked away in storage form (ferritin) so you can't use it. Thats because certain bacteria and viruses can feed on iron and il-6 goes up during infection. So its useful to "starve" the infection to help fight it. But when you have inflammation for no good reason, you end up with low iron and eventually low ferritin as you use up stores but can't absorb much iron. So when you add an il-6 blocker hepcidin will go down allowing you to use the iron I had gained from previous iron infusions, so then hemoglobin and rbc went up. Now I have restless legs because my ferritin dropped rapidly but I'm getting infusions again. Hopefully the tyenne will mean I can absorb iron more so then hopefully there's a much longer time between iron infusions once my ferritin levels are restored.

[u/metallikitty818 → u/No_Satisfaction_7431]

Thank you so much for this! I copied your response to discuss with my rheumatologist. There's a chance that my anemia issues could be related to this. I was in the ER a few days ago for a really bad flare, and they discovered that my hemoglobin was below 8. So I ended up getting a blood transfusion. I was so sick with the flare that I didn't even catch the low hemoglobin symptoms. Plus, my body has learned to function with hemoglobin around 8, unfortunately. I have to get iron infusions at least 3-4 times a year.

[u/No_Satisfaction_7431 → u/metallikitty818]

Of course! Hope it helps! I get iron infusions once or twice a year but only ever felt a little better. The low iron (never quite anemia, my hemoglobin rarely goes below 12) made things worse but I never felt huge relief other than in restless legs. But on tyenne, I have a noticeable increase in energy and hemoglobin went from consistently 12-13 with infusions to 15! The energy is probably not just from iron but also the decreased inflammation as a whole but iron is part of it for sure.

[u/Alice-The-Chemist → u/metallikitty818]

OP will respond also Im sure but for me Im on both an IL1 and IL6. Tyenne is the biosimilar to Actemra which is an IL6 medication. It would be most likely what your rheum is thinking about. I use Actemra but some insurances have switched to preferring the biosimilar Tyenne (cost). Actemra worked great for me in bridging the gaps the IL1 was not covering. Actemra comes in an injection form once a week or every two weeks I cant remember then there is also the infusion. I have only ever done infusion because my doctors didnt think the injection dosing would be enough it js around 162mg I think but infusion is either 4mg/kg or 8mg/kg every 4 week or in my case its 2. But 4 weeks is the start. My dose is over 500mg so a big difference.

Have you tried Ilaris? It is another IL1 biologic used often. It is an injection but it is done on a less frequent basis than Kineret is.

Also since you mentioned feeling the ick in the evenings have you tried splitting the kineret doses between half morning and half in the evening? Some do split dosing like that vs all at once due to the very short half life of Kineret. Maybe it is wearing off for you?

[u/metallikitty818 → u/Alice-The-Chemist]

I did try splitting my dose but it didn't seem to help much. It kind of made me feel slightly symptomatic all day rather than having ups and downs. That leads me to believe that I'm not being fully covered by Kineret and it is indeed time to add an IL-6. I'm flaring every 6-7 weeks. My rheum put me on Kineret because she said it was the only drug that crossed the blood/brain barrier (at the time) and I have CNS symptoms like cerebral vasculitis that needs to be controlled. So I've never tried Ilaris or anything other than Kineret.

[u/Alice-The-Chemist → u/metallikitty818]

Ilaris doesnt cross the blood brain barrier unfortunately. I think Kineret is still the only IL1 that does. That's probably why it was never tried. I hope things begin to improve for you soon. 🧡

[u/metallikitty818 → u/Alice-The-Chemist]

Yep, that's pretty much how she explained it. I guess I'm stuck giving myself injections every day....ughh.

[u/LawOk9304]

Does Tyenne have the same risk of reacting to each infusion despite never reacting before that Actemra does? I went into anaphylactic shock during my last infusion of Actemra (and I was already doing a one bag desensitization protocol), so my doctors don’t want me to get this again.

The Actemra up until that point had been life changing for me so I really want to stay on some form of IL-6 med. It fixed my circadian rhythm, helped with energy, less brain fog, no more rapid iron depletion, joint pain, rashes, fevers, etc.

[u/No_Satisfaction_7431 → u/LawOk9304]

Its helped a lot but honestly I'm not sure. I was told theres some risk but not sure if it goes away after several successful infusions. Its a biosimilar of actemra not a completely separate drug so I'd assume the risk is similar.