When meds wear off two days before next dose… - NRAS

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When meds wear off two days before next dose…

Brushwork profile image
14 Replies

Tocilizumab has been my silver bullet for the past almost 3 years. However, I have been getting break through, mini flare in the year. Recently, there’s trend of pain and stiffness occurring in my hands and feet two days before my next injection…

I’m putting off contacting the Rheumy team, dread the process of changing meds, the pain, the trial and error…

Go gently

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Brushwork profile image
Brushwork
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14 Replies
vonniesims profile image
vonniesims

I have this with Amgevita. They have increased my Methotrexate to see if that helps.

marvalusxoxo profile image
marvalusxoxo

The same is happening to me with my Embark for my RA yet my rheumy increased my sulfasalazine to 3 pills. I would speak with your health team

Luludean profile image
Luludean in reply tomarvalusxoxo

Can you speak with your’s ? Thet is good!!

I can leave a message on rheumztology phone but minimum of 5 days to get a reply.

marvalusxoxo profile image
marvalusxoxo in reply toLuludean

well I'm in the US our health care system is different. I see my rheumy every 3 months...he orders blood lab work and other tests and we discuss my progress with meds and so on.

Luludean profile image
Luludean in reply tomarvalusxoxo

You are lucky in that respect !

marvalusxoxo profile image
marvalusxoxo in reply toLuludean

I am blessed indeed :) ...nice talking with you ma'am/ sir

marvalusxoxo profile image
marvalusxoxo in reply toLuludean

also in my other post, the name of the medication i was talking about was wrong. it is Enbrel that he has me on for my RA and my spondyloarthritis.

Lolabridge profile image
Lolabridge

I’m also on Tocilizumab (no methotrexate) but haven’t had this problem (yet!). I inject weekly but I know some people are on two-weekly. Which is your dose?

I had to stop TOC for three weeks when I had a bad lower respiratory infection and boy did I miss it! Thank goodness I’m back on it again now.

Hope you can get some relief soon.

Brushwork profile image
Brushwork in reply toLolabridge

I’m on weekly also no Methotrexate. Hoping it won’t get worse.

ruth_p profile image
ruth_p in reply toBrushwork

Maybe they need to add a dmard if you’re only on the biologic. I take mtx alongside my tocilizumab although I’m not sure the mtx does much for my RA. My rheumatologist said that it helps to stop your body from building antibodies against the biologic so I dutifully injected each week even though it gives me headaches hey ho.

Brushwork profile image
Brushwork in reply toruth_p

I have the option to add Hydroxy, but can’t tolerate the others. I maybe will give it a try.

I’m hoping it’s a blip, and this is still better than pre Toci.

Whezziewhoozie profile image
Whezziewhoozie

I am on TOC and I know when it’s injection day… or near there. Hoping it won’t get worse and I start having symptoms a few days before hand.

aliplayspiano profile image
aliplayspiano

I’m on tocilizumab too and have been for about five years. About a year ago I felt as though I was getting quite frequent minor flares. I was reluctant to mention it to the rheumy nurse as it has worked so well. Eventually I did tell her when she rang about my blood results and she made me an appointment for a few weeks time. Typically over that time it began to settle down so when I saw the nurse we agreed to leave things as they were and see what happens. So far it has been ok. I only inject fortnightly as it does send my white cells/neutrophils pretty low. Low enough to freak out the GP if I have blood tests at the surgery which is rarely as most are done at the hospital! The consultant is more relaxed about it!

Angels54 profile image
Angels54

Hi , I’m the same as I inject Benapali usually about 3 days before the niggles start , 👍

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