3rd injection

[pwalker801]

I've took my 3rd injection of Acterma yesterday and have been lightheaded/dizzy ever since. Has anyone else experienced this and do I need to be concerned?

[SheffieldJane]

Hi, poor you. I hope it has gone off. The lightheaded dizziness is a side effect that needs to be reported to the doctor. Are you in the U.K.? You could ring the 111 NHS advice line if you are still worried. I only know what I have read. I have no personal experience of taking it. These things always happen on a weekend.

[enan-illuc]

pwalker,

I have been on Actemra/Tocilizumab for about a year and have not had any lightheadedness or dizziness. I do get anxious when I have to give myself the shot. I hope this helps.

EI

[PMR2011 in reply to enan-illuc]

Hi pwalker801,

I’ve found it’s extremely important to stay well hydrated the day of my injection. I usually drink 12 ounces of water just before and after. I also inject in the evening so am not active for at least 12hrs letting my body get used to the medication.

Many folks also get a headache just after injection. In any case it would be good to let your rheumie know. Be safe.

Me: PMR 2011, GCA 2017 down to 4mg Pred and weekly Actemra injections. currently feeling really good.

[pwalker801 in reply to PMR2011]

very good suggestions---thanks--I do think the injections are helping so I don't want to quit, my last sed rate was 2 and the CRP was.2 so hoping these are temporary side effects and my body will adjust.

[enan-illuc in reply to PMR2011]

PMR2011,

Thank you for the great advice. I will hydrate more and give myself the injection at night. I do the Actemra injection once every two weeks and I feel it really helps.

[shazstep]

I also had reactions after my 3rd injection. My light headiness was a result of low blood pressure. I would get headaches 2 days after the injection. While on the injections my numbers were great but then I got all kinds of side effects. I had a 3 week break from injections. When I went back on the injection I finished up in hospital. My skin was so dry and I started coughing which sent my blood pressure up over 200. Actemra is not for me. I hope you keep having success with it.

[pwalker801 in reply to shazstep]

ohhhhhhhhhhhhh dang, did not want to hear this. how long were you on Actemra?

[shazstep in reply to pwalker801]

I had 7 injections all up. Just because it does not suit me there are many people who have success with it.

[Jim-CJ]

Hi pwalker801,

My wife (GCA) has been on Actemra for 3 1/2 months and has successfully gone from 20mg to 11mg of prednisone. After fighting tapering for over three years, Actemra has shone the way. She does get a little dizzy sometimes, but it comes and goes. However, she is on a lot of pain meds, also. 14 bone fractures as a result of prednisone.

Stick With It,

Jim & CJ

[LMAR]

what is Actemra?

[PMRpro Ambassador in reply to LMAR]

Google it for a full explanation. It is a monoclonal antibody drug which has been used for rheumatoid arthritis for about 7 or 8 years and which was recently approved by the FDA for use in GCA. In many patients it allows a very speedy reduction in pred dose when used at the same time. It costs IRO $17K for the drug alone and when administered as infusions once a month it can be up to $40K.

In the UK approval was denied initially but the decision has been revised and it may be used for certain patients subject to strict criteria.