Rheumy appointment outcome. Tocilizumab is it good? Any actual experiences I would love to hear?

[Brushwork]

I had a really good visit to the hospital, actually saw my consultant rather than one of her team. She is good, she listens.

First though, I am amazed at the MRI scan I had on my left hand. That technology is awesome, the lady who did it was excited about the capability of it and chatted throughout explaining the images. It seems that I have severe inflammation and some sponginess and erosion but not much, thankfully. Apparently, it was only necessary to scan one part of me as that gives a clear picture overall.

I had a steroid injection and already feel better. I slept without pain.

My mouth ulcer infection is getting better. Apparently I am on a hiding to nowhere with these. high levels of inflammation in the body prevents healing, but so do many of the medications we take including biologics. It is a balancing act.

No more Methotrexate, a medication that causes depression in me is no more acceptable to the Rheumy than it is to me.

There was a trainee in the consult, (ARI is aligned with the university). My blood works can cause confusion it seems CRP & ESR are never high despite the obvious (now) inflammation. My last CRP a week ago came back at 6, Dr said she would expect it to be very much higher than that, so advised the trainee that bloods alone are never to be used. Though it is unusual.

Tocilizumab to start as soon as can be arranged, but probably a month. Meantime, I need to have a chest Xray my breathing is not quite as it was, also will need to have video chat with the biologics nurse.

Anyway, thank you all for your feedback and support.

It is a bright but frosty morning and I have a mountain of jobs to do, while I can.

Go gently through the day and stay safe.

[Boxerlady]

That sounds like a really positive outcome 👍 Great that the student was getting good training too. I thought of you yesterday evening and 🤞

[Mmrr]

A good appointment and outcome 💐

[oldtimer]

I have often found that consultations that include someone in training are better! The consultant explains the thinking behind decisions and is better at discussing the options.

[Lolabridge]

So pleased you have a Rheumy who listens and does not just focus on blood test results. MTX caused me lung problems including breathlessness so maybe you will see an improvement now you’re off it. 🤞🏻

[springcross]

That's really great news Brushwork. I'm glad you had a really good appointment and that you at least have some relief now after the steroid injection and also that your mouth ulcer is getting better. Onwards and upwards now hopefully once you get the Tocilizumab. xx

[Marionfromhappydays]

That sounds great, now you have a plan of action.

💪

[Vonnie10]

I'm on tocz it's been about 5 months now but I've had steriod injection twice one into my knee joint and one overall I do feel better not a 100 percent not as much stiffness but still not the old me ...I cant decide if this is the new me or is the tocz not working fully i fear this is the new me.. but I'm better than what i was hope this helps you.. goodluck. X

[Kalimera57]

The day or 2 after I take methotrexate I’m usually very tearful and down. That’s very interesting what you wrote.

[Brushwork in reply to Kalimera57]

My mental health improved dramatically when I stopped Mtx. I honestly preferred the extreme pain of a serious flare to the darkness of Mtx. I had the same problem on both tablets and injection. I won’t be going back it.

[Kalimera57 in reply to Brushwork]

Depression/ feelings of sadness aren’t on the side effects list. They should be.

[Brushwork in reply to Kalimera57]

Totally agree. It is apparent that we are not alone