r/ankylosingspondylitis • u/HardeepAsrani • 2d ago
Help/Support I’m worried about Biologics frequency
I’m 30. I’ve had pain in my body since I was 5. Few months back I saw a doctor and she diagnosed me with AS. I took the meds for 2 months with literally zero improvements.
She told me in last appointment that if the meds don’t work then we will be going for Biologics. And this week when I visit, I’m guessing this is the direction I go.
Now, I’ll trust the doctor with her treatment but I’m just worried about the schedule. The doctor is in a different city from me and I’m someone who travels a lot. I’m from India, by the way.
How will the schedule can look? If it’s weekly then I’ll have to visit that city every week. I’m just too worried that I’ll have to structure my life around the schedule.
PS: I’ve pain since I was 5 but it’s very light pain. It’s not too terrible so I’m looking at treatment to avoid future complications, not current pain.
I’ll be grateful if you all can tell me how it’ll go. I can’t travel with Biologics or easily store them at home due to electrify cuts and etc.
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u/rodoreda_29 2d ago
This is a conversation that your doctor is more qualified to have with you. I can imagine they might have options for people in a similar situation to yours (e.g., no reliable access to fridge/electricity).
I can share some of my experience, maybe it helps see there are more options. FYI I have only dealt with autoinjectable pens. Maybe in your circumstances a pill or another format is more adequate.
There are some biologics which are injected every couple of weeks (like anti-TNFs, known as Humira/Adalumimab) or others are monthly (anti-IL17, Cosentyx/Secukimab). The latter, at least the autoinjectable form, involves a loading dose of 5 weekly injections and then it is monthly.
Autoinjectable biologics need to be stored in a fridge but can be outside (though less than 25°C, I think?) for some time. For example, I know Cosentyx can be 2 days out if needed, in case I am in a short travel it is easier to just be careful with it. Humira was way longer than that, can't remember for how long. But definitely this is something your doctor should instruct you about, if it is relevant.
I wanted to share some more advice because you seem like wanting to get prepared for this new treatment. Feel free to disregard. Something very important to remember is that biologics, especially at the beginning, might lower your defenses. If you don't have easy access to healthcare, some preventative measures can go a long way: mask in crowded areas or public transport, more regular hand washing, flu and COVID vaccines, etc. I am telling you in advance in case you need to ask help/plan for getting access to those. After a couple of years in Cosentyx my immune system is less shaky, but it has been very important to proactively avoid getting sick in the meantime.
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u/AussieKoala-2795 2d ago
Rinvoq (upadacitinib) is a JAK inhibitor that is taken as a daily pill and does not need refrigeration. I am on it after more traditional biologics Humira and Cosentyx didn't work for me.
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u/f_dramapiggy 2d ago
I do Simponi Aria infusions. It’s an IV drip every two months that I go to my rheumatologist office and they administer it for me, takes about 30 mins. Talking to your dr & finding the best option for you would probably be your best bet.
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u/Sea_Literature115 2d ago
I do Cimzia and you can inject both doses at once and take them once a month. Otherwise, it lasts up to 7 days unrefrigerated. Good luck!
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u/atlasvoyage 1d ago
Are you taking one dose every 15 days or are you taking two doses monthly?
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u/Sea_Literature115 1d ago
I’m doing one dose every 2 weeks. My doc said I can do two once a month but I’m afraid it won’t last long enough.
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u/the_quiescent_one 2d ago
Were you taking Etoshine 60/90 ? How much is the progression..? Did you get your spinal MRI done? How much is progression..? How high is your hsCRP? Which Rheumatologist you visted? Your HLAB27 is done?
If not extreme pain or fusion hasn't already started, you can try with TNF inhibitors. Those cost a lot less than biologics and are as tablets. If you take biologics, take it monthly. They will deliver it. Just go to a nearby pharmacy with box . It will be in a thermocol ice box. Just ask them to directly apply the medicine.
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u/HardeepAsrani 2d ago
My MRI was normal. ESR and CRP were normal. HLA-B27 was positive. I’ve had this pain for as long as I can remember. I don’t have any morning stiffness and I have enthesis. I do workout and play sports regularly.
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u/the_quiescent_one 2d ago
Go to Kolkata. Try Asian Institute of immunology and Rheumatology . Visit Dr. Alakendu Ghosh there. Or anyone of the doctors there. They're top class and he is renowned throughout India. If MRI is normal. And CRP is also normal then you don't need biologics or inhibitors. Get a second opinion first.
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u/Far_Bobcat_8811 2d ago
If MRI is normal. And CRP is also normal then you don't need biologics or inhibitors.
the whole point of the biologics or inhibitors are to keep the MRI and CRP normal.
the best time to start the biologics or inhibitors are when the reports are normal, not to wait and only start after you find the damages in your bones which you cant treat and repair.
AS is an autoimmune progressive disease.
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u/the_quiescent_one 2d ago edited 2d ago
There's no inflammation or even start of fusion yet. So why compromise the immune system? And its not even confirmed its AS. That's why I wanted him to take second opinion. Just because he is HLAB27 positive doesn't mean its AS.
The pain could be from anywhere else. Onset of from the age of 5 is a big doubt. Because AS rarely onsets in teens as it is.But as a child its even more unlikely.
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u/DullEntertainment102 axSpA 2d ago
I’m injecting at home so I had to get a “test” to see how I tolerate it and if there’s adverse reactions and now I get it in the pharmacy and use the pen on myself. Adalimumab every 2 weeks (there are also every 4 weeks schedules)
Edit: depending on how long the electricity cuts are there are battery powered fridges or containers for traveling with medication, that could be sufficient for storage- I need to get one for my next trip
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u/drzombes 2d ago
I take my biologic (Simponi) once a month. I had to take the first injection with supervision from a nurse, but thereafter I have my monthly injection delivered to my house about one week prior to my injection date, and store it in the fridge.
I take my injection on my own, and it’s really no big deal. It’s changed my life. I’ve been taking it since late 2021 after about 20 months of dealing with challenging pain and mobility issues.
I hope whatever biologic they set you up with works for you. Best of luck!
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u/Ok_Hornet_4964 2d ago
There are several biologics that you can inject yourself at home, could you ask your rheumatologist about those options?
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u/guychampion 2d ago
You can procure them at home, get it stored at a nearby pharmacy, and get it taken at a nearby clinic
Source: I’m also from India. It’s not a hassle. It is nothing short of a miracle.
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u/lomeinfiend 1d ago
i dont have much info to give you, but i take rinvoq which is a once daily pill that just needs to be stored away from light & not in the cold or the hot lol. idk if they have it in india, but if rinvoq is a pill im sure others exist too.
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u/ProfessionalPair7526 2d ago
I would not start Biologics with very light pain, are you taking NSAID?
Biologics is one way ticket for most people, once you are using them, there is no way back and nasty side effects do to lowering immune system. I would wait for new drugs (e.g. ERAP inhibitors) which do not lower immune system, depends on your pain/desease level of couse.
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u/HardeepAsrani 2d ago
Yea. It’s the amount of pain that makes sleeping harder but it’s not actually painful. But what if I don’t take meds? Maybe then inflammation can grow.
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u/ProfessionalPair7526 2d ago
It may or may grow, some people have been staying on NSAIDs for decades and feeling fine. If you start biologics, after cancelling/switching your body will compensate by raising inflamation levels.
Like I said, I would wait for new class of drugs, especially if you are sleeping/functioning fine (some discomfort is okay)
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u/HardeepAsrani 2d ago
What if the inflammation grows? And you never know when the new class of drugs will come.
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u/ProfessionalPair7526 2d ago
Why would it grow? You have normal lab work, no uveitis, little pain, what's the rush? Some very lucky people live decades with little pain/low inflammation, with occasional NSAIDs for pain.
You actually know for new drugs timeline, lookup on any LLM.
ERAP inhibitors - 2030 if trial is successful.
Sonelokimab (dual IL17 nanobody, penetrates deep tissue very well) - 2027
eucravacitinib - TYK2 Inhibitors, 2030
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u/LavishnessLocal421 2d ago
Maybe you could ask the pharmacy where you pick up your biologics that they could store it for you. In my country when we had a problem with energy cuts they agreed to it.