Funny Actemra experience: Last night was my third... - PMRGCAuk

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Funny Actemra experience

Linny3 profile image
20 Replies

Last night was my third Actemra shot. This morning I was in less pain and had a lot more energy than usual. I went out early this morning and washed my car windows. Then I took windex cleaner (that you attach to a garden hose) and cleaned all but 2 of my house windows on the outside. My husband came out and joking said, "I should take another shot of that stuff if it gets me moving like it did this morning." I think he would have liked to try it :)

Unfortunately it gives me a really horrible headache all night and makes my vision really odd. Luckily I take it before bed so the vision problem doesn't bother be too much.

Make it a Good Day

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Linny3 profile image
Linny3
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PMRpro profile image
PMRproAmbassador

I could do with some of that!!!!!

SheffieldJane profile image
SheffieldJane

Golly Linny3. I am still exhausted - Metformin I think. The headaches would scare me because of GCA. Talk to your Dr. I know it’s a funny story but we have only been using Tocilizumab for GCA for a relatively short period. Well in the U.K. anyway.

Linny3 profile image
Linny3 in reply to SheffieldJane

I always think about GCA. So sorry you have it! The headache I get from Actemra wakes me a few times and then I can sleep. It is usually gone by morning. I get headaches very easily and have had a pred. headache for years. Just one of the side effects I get.

SheffieldJane profile image
SheffieldJane in reply to Linny3

Sorry, it’s pretty on top for me right now. Consequently I am seeing it everywhere. I am also prone to headaches, at least a cotton wool head most days. My GCA headache was not severe like some people’s. I spoke to my Rheumatologist today, I am on Tocilizumab /Actemra (4 doses so far) GCA diagnosed for about 7 weeks, and down to 10 mgs of Pred. she always asks me about headaches. Of course you know your own body. I could do with an energy burst, like yours.

Longtimer profile image
Longtimer

I remember that feeling 8 years ago when I went on steroids....I`m jealous!

Linny3 profile image
Linny3 in reply to Longtimer

The steroids never gave me added energy );

Actemra is not a steroid.

SheffieldJane profile image
SheffieldJane in reply to Longtimer

Me too! I could have kissed my GP. No pain and a massive lift in mood. 😉

Longtimer profile image
Longtimer in reply to SheffieldJane

OH said I was like a car that had been given a new engine! (well he was a mechanic!)...alas a distant memory now....I certainly don`t ever expect that again, just normal energy to lead a relatively normal life........

Every time things get a tiny bit easier, something else crops up......

Hope you are coping, this weather isn`t helping!

SheffieldJane profile image
SheffieldJane in reply to Longtimer

I agree 100%. My diabetic eye test has come back with some background retinopathy and I’m exhausted and sick from Metformin. I think ( for the first time, ever) I am staying in bed today. My Rheumatologist suggested that some of the fatigue could be because of the psychological blows. It doesn’t feel like that, but it hasn’t helped.

Longtimer profile image
Longtimer in reply to SheffieldJane

Is there not an alternative to Metformin....I know someone else that was taken off and given something else....I have said all along, as does my sister many years younger than me with RA.......fatigue can be the biggest battle.....😕

SheffieldJane profile image
SheffieldJane in reply to Longtimer

All diabetic meds sound as bad as each other. I am on it though. Coming off Pred may do the trick and that’s going well. Thanks! X

Longtimer profile image
Longtimer in reply to SheffieldJane

Well done with the pre d lowering....any tips for a struggler??.......

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Actemra/tocilizumab!!!!

Longtimer profile image
Longtimer in reply to PMRpro

I wish!!.....I shall beg for it if I see the doctor at Rheumatology later in the year...would get down on my knees, but wouldn't get up again....

SheffieldJane profile image
SheffieldJane in reply to Longtimer

I am afraid PMRPro is right. It has been remarkable so far. I still worry about GCA though. I will be off Pred in about 15 weeks at this rate, then it’s just Toc and me flying alone.

Longtimer profile image
Longtimer in reply to SheffieldJane

🙏

Rugger profile image
Rugger

I started Actemra just before lockdown and it has given me so much energy that I have been gardening like never before. After 3 months, I was coming in for lunch after a morning's gardening, tripped and fell and fractured my humerus - not at all funny! 7 weeks on, I've just got rid of the sling and have started exercises to try and get my arm back into shape.

Take care Linny and the rest of the Actemra clan!

Linny3 profile image
Linny3 in reply to Rugger

That is the danger for us now. We get the energy, over work or hurt ourselves and get put back in recovery. YIKES! Old age is not made for the weak.

scottygirl73 profile image
scottygirl73 in reply to Rugger

Oh gosh how awful for you,glad you on mend.xx

scottygirl73 profile image
scottygirl73

I always get a headache for couple days after Actemra,but i have not had the energy you had ☹ mabey next time though i have been on it for 17 months now.xx

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