u/FlareUps_FinishLines

I’ve been on Simlandi (Adalimumab) since Dec 4. I’ve been sick 4 times in last 6ish months (including right now). This is my third round of antibiotics since February due to being so sick. I’ve never struggled this badly with catching things. I literally just can’t fight anything off now that I’m on these injections. But here’s the thing, I don’t feel like it’s helping my main symptoms either. My biggest symptoms are horrible SI joint pain and really really bad fatigue. The other pain in my hands, wrist, ankles, feet and every now and then my knees are mild. My back has improved a little but I’m still taking naproxen for it when I need to, and my fatigue has not improved. So to me, it’s not really helping - it’s simply hurting me by making it harder to fight acute illnesses. I felt good in December and January and had high hopes, but then I was sick for all of February, then felt ok for 3 weeks in March, including more energy, but then got sick and just nose dived. Fatigue has been so bad since then and I’ve been sick a few more times since.

My rheumatologist told me to take the shots weekly for 6 weeks to see if we could dig me out of this fatigue flare. I took a shot May 5 and May 12, and then boom, super sick starting May 15. Had to go to urgent care (again - this urgent care has seen me 3 times in a 2 months now) bc I felt like death warmed over. I skipped today’s shot because I’m actively sick.

I’m considering stopping the injections for 6 months to see what happens. I’ll of course talk to my rheumatologist about this idea, but anecdotally I am curious if anyone has a similar experience? If so, what happened when you stopped your injections? I just don’t think this is a good treatment for me.

So my question is - does anyone here have experience taking their biologic or biosimilar weekly? Did you see improvement?

I had a follow up with my rheum today and expressed all of my concerns. I've been in a flare for almost 6 weeks, with a huuuuuge crash in energy. Its been a really rough time. After a lot of discussion and questions she had for me, she recommended I take my Simlandi injections weekly rather than every other week (I didn't even know this was an option). As well as naproxen twice a day for 2-3 weeks for stiffness/joint pain. The joint pain and stiffness has not been the worst I've experienced, thought its not minor - the fatigue is the worst symptom I'm experiencing with this flare. I have to claw my way out of it somehow. As an example, for the past few weeks, I will sleep 8-9 hours at night, and then midday I will also take a 3 hour nap, and then sleep another 8-9 hours the next night. It doesn't help me feel less exhausted. I'm tired all day. Ugh.

I (42F) was diagnosed like 8 months ago after more than 2 years of not fun symptoms popping up and doctors having no idea what to tell me. Mainly, I deal with extreme and persistent fatigue, general body aches, a general feeling of “being run down” where you feel “sick” but you have no acute illness like the flu, horrible SI joint pain, pain my my feet, right wrist, ankles, knees, and right hand, and headaches. I also get tendinitis easily, including plantar fasciitis and patellar tendinitis. I’ve been on a biosimilar (Simlandi) since December 4, so coming up on 6 months. I was showing improvement for a short time, but since mid March, my symptoms have gotten worse. I’m seriously questioning my diagnosis and wondering if I have something else. Or maybe I just need a different medication? I messaged my rheum about all of this, with details of how my symptoms have worsened significantly, and asking if my appointment in June 15 can be moved up.

Has anyone else gone through something similar?

I should also note, I eat a pretty healthy diet. I cook 99% of my meals, and I rarely eat out (2-3 times a month). I am allergic to gluten and dairy, so I’ve been gluten free and dairy free for 15 years. I eat lean meats, beans, lots of fruits and veggies, and I have a healthy macro balance. I also take specific supplements like vitamin d as I have struggled with that one for 16 years. My level is currently ok. I also take b12, omega 3, turmeric, sarsaparilla, magnesium at night, and a probiotic as I have gut motility issues due to pelvic floor dysfunction. My rheum is aware of this and supports all of this based on my lab work and physical exams. I used to be a triathlete and trail runner but these changes in my health have put all of that on hold. I struggle to walk up 1 flight of stairs some days. Other days I can walk a bit before I get tired. I have a 5k coming up in June as a goal but I have no idea if I’ll actually be able to do it - at minimum I can walk it - hopefully.

Hi! I made this soup today - the original recipe was just for a simple ham and potato soup, but I decided to add white beans and kale for more fiber:

Ingredients

• 1 Tablespoons olive oil
• 1 onion, diced
• 4 stalks celery, diced
• 8 Yukon Gold Potatoes and diced (I don’t peel mine)
• 32 ounces low sodium chicken broth or vegetable broth
• 3 cups water (can do additional broth)
• 2 ham steaks, diced
• 1 cup non-dairy milk (I used soy milk - unsweetened)
• 3 Tablespoons gluten free flour blend/3 Tablespoons water
• 2 cans white beans, drained
• 1 bunch of kale, chopped (you can also use spinach)
• Salt and pepper to taste (I used about a teaspoon of pepper, but measure with your heart)

Instructions

1. In a large saucepan, sauté the onions and celery in the olive oil for about five minutes until onion is translucent.
2. Add the diced potatoes, diced ham, chicken broth, black pepper and enough water to ensure everything is covered well with liquid, and bring to a boil. Reduce to low heat and simmer for 15 minutes.
3. Add the chopped kale and drained white beans, bring back to a boil and simmer for another 10-15 minutes minutes.
4. Add the non-dairy milk and salt to the pot if you want it saltier (I did not add any - the ham is salty enough for me), then stir. Bring back to a slow boil, then reduce heat again.
5. Put the gluten free flour and the tablespoons of water in a small container with a lid, and shake well. Drizzle the mixture in the soup while stirring. Simmer for another 3-5 minutes.

I got 6 large portions. Hope you enjoy!

Notes:

Leftovers will keep in the refrigerator for 4 days.

If you aren't dairy free, go ahead and use regular milk. If you are not gluten free, you can use regular flour.

You could also leave the ham out if you need to make this vegan, but may need additional salt or chicken bouillon, as a lot of the flavor comes from the diced pork. You can add diced tofu as well for additional.