1. < Polymyalgia Rheumatica (PMR)

Actemra sef Injection

Posted by frenchfrank51 @frenchfrank51, Mar 31 10:00am

Hello all.

I know it's a fairly simple question but, can anyone offer any advice on how to use the self injection pen for Actemra? I've not done it before and, although my rhumatologist gave me a prescription to have it done at home by a nurse, I'm having difficulty getting a nurse to do so. For a variety of reasons access to the village in which we live can be difficult so they tend to do their best to to avoid doing so.

The thing is that I feel really, really rough at the moment and don't feel I'm even up to starting a new medication never mind administering it myself without having a good idea about the do's and dont's beforehand, simple as they might be. Most of you, I Imagine, will know how that feels and any advice will help a lot.

Thanks in advance.

Frank

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DadCue | @dadcue | Mar 31 11:28am

Do you have the ACTpen autoinjector?
https://www.actemrahcp.com/content/dam/gene/actemrahcp/ra/pdfs/ACT1209140083(6)a_How_to_Use_Your_ACTPen_Patient_Brochure.pdf
or here is a video


-----------------------------
You can't really go wrong except maybe pushing the button too soon or without holding the needle part of the pen close to the skin long enough for the medication to be injected. Does it have a button to push?

I have only done the other type of injection where I needed to push the plunger myself. It was called a pre-filled syringe.

I used to give shots to people all the time. I'm skittish giving shots to myself. It doesn't have to be a nurse giving it. Is there any chance someone else can do it for you? A friend or almost anyone might be willing to do it for you.

REPLY
1 reply
jeff97 | @jeff97 | Mar 31 11:33am

Frank, I have always been skittish about medical things, so I was very uneasy about the idea of injecting myself with Actemra. But I got through the initial few shots, and now I'm very calm about it. I have given myself 32 injections so far.

There are some videos on Youtube that are helpful. I watched them a few of those before trying it myself.

The first thing to realize is that the injecions are almost completely foolproof.

I follow this sequence for my weekly injections:

1. Take the Actemra out of the refrigerator and let it warm up at room temperature for at least 45 minutes.
2. Wash your hands good.
3. Use an alcohol swab to clean the area where you will take the injection. I always inject in my abdomen, because I'm very thin and that's where I have the most fat. If you have some fat on your thighs, you can also inject there.
4. After the alcohol dries in a minute or so, put the injector pen on your skin. I am right handed, so with my left hand I pinch the area around the pen for support. The pen won't inject the Actemra if it is not pressed firmly against the skin. I think of it as cocking a gun. The pen won't inject if it isn't cocked. Then press the plunger on the pen with your thumb. The Actemra will be automatically injected. It is very important to keep your hand steady while the pen is injecting and to maintain the pressure against your skin. You can watch the purple indicator of the plunger as it moves. It takes a few seconds. You will hear a click when the plunger completes injecting the Actemra. I wait a few seconds more to make sure it has completed. Then I take the injector pen away from my skin. You should see the purple indicator of the plunger inside the pen, and that shows it completed the injection. I check my skin where I injected for any small amount of Actemra or blood, and if necessary wipe it away with the alcohol wipe.
5. You can do this any way you like, but I send myself an email after every injection. I include where I injected and any issues. Since I inject in my abdomen, I use a clock notation for where the injection went in my abdomen (12 o'clock, 3 o'clock, etc). The benefits of the email are that I have a record to ensure I took the shot, and also it allows me to vary the position of the shot. I read that you shouldn't inject at the same location week after week.

That's it! Like I say it gets much easier after you've done it a few times.

REPLY
2 replies
tuckerp | @tuckerp | Mar 31 12:24pm
In reply to @jeff97 "Frank, I have always been skittish about medical things, so I was very uneasy about the..." + (show)
@jeff97

Frank, I have always been skittish about medical things, so I was very uneasy about the idea of injecting myself with Actemra. But I got through the initial few shots, and now I'm very calm about it. I have given myself 32 injections so far.

There are some videos on Youtube that are helpful. I watched them a few of those before trying it myself.

The first thing to realize is that the injecions are almost completely foolproof.

I follow this sequence for my weekly injections:

1. Take the Actemra out of the refrigerator and let it warm up at room temperature for at least 45 minutes.
2. Wash your hands good.
3. Use an alcohol swab to clean the area where you will take the injection. I always inject in my abdomen, because I'm very thin and that's where I have the most fat. If you have some fat on your thighs, you can also inject there.
4. After the alcohol dries in a minute or so, put the injector pen on your skin. I am right handed, so with my left hand I pinch the area around the pen for support. The pen won't inject the Actemra if it is not pressed firmly against the skin. I think of it as cocking a gun. The pen won't inject if it isn't cocked. Then press the plunger on the pen with your thumb. The Actemra will be automatically injected. It is very important to keep your hand steady while the pen is injecting and to maintain the pressure against your skin. You can watch the purple indicator of the plunger as it moves. It takes a few seconds. You will hear a click when the plunger completes injecting the Actemra. I wait a few seconds more to make sure it has completed. Then I take the injector pen away from my skin. You should see the purple indicator of the plunger inside the pen, and that shows it completed the injection. I check my skin where I injected for any small amount of Actemra or blood, and if necessary wipe it away with the alcohol wipe.
5. You can do this any way you like, but I send myself an email after every injection. I include where I injected and any issues. Since I inject in my abdomen, I use a clock notation for where the injection went in my abdomen (12 o'clock, 3 o'clock, etc). The benefits of the email are that I have a record to ensure I took the shot, and also it allows me to vary the position of the shot. I read that you shouldn't inject at the same location week after week.

That's it! Like I say it gets much easier after you've done it a few times.

Jump to this post

good idea on the email. I inject a cholesterol medication. That tip helps.

REPLY
frenchfrank51 | @frenchfrank51 | Mar 31 2:21pm
In reply to @dadcue "Do you have the ACTpen autoinjector? https://www.actemrahcp.com/content/dam/gene/actemrahcp/ra/pdfs/ACT1209140083(6)a_How_to_Use_Your_ACTPen_Patient_Brochure.pdf or here is a video https://www.youtube.com/watch?v=WzmuwgEQI4Y ----------------------------- You can't..." + (show)
@dadcue

Do you have the ACTpen autoinjector?
https://www.actemrahcp.com/content/dam/gene/actemrahcp/ra/pdfs/ACT1209140083(6)a_How_to_Use_Your_ACTPen_Patient_Brochure.pdf
or here is a video


-----------------------------
You can't really go wrong except maybe pushing the button too soon or without holding the needle part of the pen close to the skin long enough for the medication to be injected. Does it have a button to push?

I have only done the other type of injection where I needed to push the plunger myself. It was called a pre-filled syringe.

I used to give shots to people all the time. I'm skittish giving shots to myself. It doesn't have to be a nurse giving it. Is there any chance someone else can do it for you? A friend or almost anyone might be willing to do it for you.

Jump to this post

Many thanks for your reply.

Yes, I think it's an autoinjector pen. I've not looked yet as I've not felt well enough to even go to the fridge and check it out.

I've been lucky this afternoon and picked up a canceled appointment with a local doctor online for tomorrow afternoon. I'm supposed to go anyway for a tetanus jab which was prescribed by my rhumatologist because of my low autoimmunity levels (it doesn't end does it?). So I'll ask the doctor to do it or show me how. I just hope it doesn't make me feel any worse. But thanks again for your advice. Much appreciated.

REPLY
frenchfrank51 | @frenchfrank51 | Mar 31 2:38pm
In reply to @jeff97 "Frank, I have always been skittish about medical things, so I was very uneasy about the..." + (show)
@jeff97

Frank, I have always been skittish about medical things, so I was very uneasy about the idea of injecting myself with Actemra. But I got through the initial few shots, and now I'm very calm about it. I have given myself 32 injections so far.

There are some videos on Youtube that are helpful. I watched them a few of those before trying it myself.

The first thing to realize is that the injecions are almost completely foolproof.

I follow this sequence for my weekly injections:

1. Take the Actemra out of the refrigerator and let it warm up at room temperature for at least 45 minutes.
2. Wash your hands good.
3. Use an alcohol swab to clean the area where you will take the injection. I always inject in my abdomen, because I'm very thin and that's where I have the most fat. If you have some fat on your thighs, you can also inject there.
4. After the alcohol dries in a minute or so, put the injector pen on your skin. I am right handed, so with my left hand I pinch the area around the pen for support. The pen won't inject the Actemra if it is not pressed firmly against the skin. I think of it as cocking a gun. The pen won't inject if it isn't cocked. Then press the plunger on the pen with your thumb. The Actemra will be automatically injected. It is very important to keep your hand steady while the pen is injecting and to maintain the pressure against your skin. You can watch the purple indicator of the plunger as it moves. It takes a few seconds. You will hear a click when the plunger completes injecting the Actemra. I wait a few seconds more to make sure it has completed. Then I take the injector pen away from my skin. You should see the purple indicator of the plunger inside the pen, and that shows it completed the injection. I check my skin where I injected for any small amount of Actemra or blood, and if necessary wipe it away with the alcohol wipe.
5. You can do this any way you like, but I send myself an email after every injection. I include where I injected and any issues. Since I inject in my abdomen, I use a clock notation for where the injection went in my abdomen (12 o'clock, 3 o'clock, etc). The benefits of the email are that I have a record to ensure I took the shot, and also it allows me to vary the position of the shot. I read that you shouldn't inject at the same location week after week.

That's it! Like I say it gets much easier after you've done it a few times.

Jump to this post

Many thanks Jeff.
Many thanks Jeff.

Really good information and advice. I'd probably feel a lot more confident (but still skittish as you describe it) having read your post. Really appreciate it.

However, as it happens, I was lucky this afternoon and picked up a canceled appointment with a local doctor online for tomorrow afternoon. That never usually happens. I have to go anyway for a tetanus jab because of my now low autoimmunity levels so I'll ask the doctor to do the Acemetra at the same time and ask her to teach me how to do it too. Your email routine sounds like a brilliant idea. I'll make sure I do that too. Many thanks again for your advice. I'll print off your instructions so I'll have them at hand once I start to do the injections myself. The only thing I'm concerned about is taking a new strong medicine when I feel so ill.

Frank

REPLY
1 reply
jeff97 | @jeff97 | Mar 31 2:52pm
In reply to @frenchfrank51 "Many thanks Jeff. Many thanks Jeff. Really good information and advice. I'd probably feel a lot..." + (show)
@frenchfrank51

Many thanks Jeff.
Many thanks Jeff.

Really good information and advice. I'd probably feel a lot more confident (but still skittish as you describe it) having read your post. Really appreciate it.

However, as it happens, I was lucky this afternoon and picked up a canceled appointment with a local doctor online for tomorrow afternoon. That never usually happens. I have to go anyway for a tetanus jab because of my now low autoimmunity levels so I'll ask the doctor to do the Acemetra at the same time and ask her to teach me how to do it too. Your email routine sounds like a brilliant idea. I'll make sure I do that too. Many thanks again for your advice. I'll print off your instructions so I'll have them at hand once I start to do the injections myself. The only thing I'm concerned about is taking a new strong medicine when I feel so ill.

Frank

Jump to this post

For what it's worth, I've never felt much from the Actemra. I know it's working, because I've been able to taper down on the prednisone to 5 mg so far, but it's not like prednisone that makes you feel hyper, causes insomnia, etc. Early on I felt a little tired sometimes the day after the Actemra shots, but it was never very bad. Now I don't feel that anymore.

REPLY
1 reply
DadCue | @dadcue | Mar 31 3:25pm
In reply to @jeff97 "For what it's worth, I've never felt much from the Actemra. I know it's working, because..." + (show)
@jeff97

For what it's worth, I've never felt much from the Actemra. I know it's working, because I've been able to taper down on the prednisone to 5 mg so far, but it's not like prednisone that makes you feel hyper, causes insomnia, etc. Early on I felt a little tired sometimes the day after the Actemra shots, but it was never very bad. Now I don't feel that anymore.

Jump to this post

"Some patients will start to see improvement within a few weeks, but it may take several months to take full effect."
https://rheumatology.org/patients/sarilumab-kevzara
-------------------
oops ... same for Actemra
https://rheumatology.org/patients/tocilizumab-actemra
--------------------------
I didn't suddenly feel better either. The way I knew Actemra "might be working" was because I could taper my prednisone dose lower.

As a general rule, my rheumatologist said I needed to give any biologic 3 months to know if it is going to work or not. I only tapered my prednisone dose by 1 mg per month for the first 3 months. I wasn't sure Actemra was working except for not having a flare during this time. After 3 months I decided to taper my prednisone dose by 1 mg per week. I felt the same until I started to "feel worse" when my prednisone dose was less than 5 mg.

My symptoms were NOT the same as a full blown PMR flare but I had some relatively minor muscle aches and pains. Overwhelming fatigue was my main problem along with dizzy spells and "black out" spells upon standing. Everything combined made my doctor suspect adrenal insufficiency. When my cortisol level was low, I was told to stay on 3 mg of Prednisone until things improved.

My adrenal function improved with time and eventually I was able to taper off prednisone a year after starting Actemra. I was on Prednisone for a total of 12 years to treat PMR so I had forgotten what it felt like to be off prednisone.

Now my rheumatologist asks me how long I have been OFF prednisone. I'm losing track but it is getting close to 5 years.

REPLY
trina24 | @trina24 | Apr 1 8:14am

I get an infusion with Actemra..No problem. You should ask about it.Theresa

REPLY
papas | @papas | Apr 1 8:29am

Frank:
I began my self-injecting(one/week) Actemra July 10,2024. I read the direction watch videos and have had minimal adverse reactions to the shot. One piece of advice - do remove the pen 45minutes before you inject or you will feel the cold Actemra. It is a simple procedure, with no pain and takes about 2 minutes. I inject in the belly area rotating around the belly button as described in the instructions. During this time I was on a 15day river boat cruse with no problem no refrigeration required all this is in the instruction. I did have to skip two shots, one during a bout with COVID and the other during a tooth extraction procedure. NOTE: I am on 2mg Prednisone having come down from 15mg when I started the Actemra.

REPLY
1 reply
frenchfrank51 | @frenchfrank51 | Apr 1 8:51am
In reply to @papas "Frank: I began my self-injecting(one/week) Actemra July 10,2024. I read the direction watch videos and have..." + (show)
@papas

Frank:
I began my self-injecting(one/week) Actemra July 10,2024. I read the direction watch videos and have had minimal adverse reactions to the shot. One piece of advice - do remove the pen 45minutes before you inject or you will feel the cold Actemra. It is a simple procedure, with no pain and takes about 2 minutes. I inject in the belly area rotating around the belly button as described in the instructions. During this time I was on a 15day river boat cruse with no problem no refrigeration required all this is in the instruction. I did have to skip two shots, one during a bout with COVID and the other during a tooth extraction procedure. NOTE: I am on 2mg Prednisone having come down from 15mg when I started the Actemra.

Jump to this post

Thanks papa's

You say you paused the shots during a bout of COVID and for a tooth extraction and I see that advice on the notes that comes with the medication.

I seem to get regular fungal rashes on different parts of my body, especially on my chest and my armpits. Probably about three or four times a year and properly because I feel very tired and low on energy and (or visa versa). I usually have to take a course of anti fungal meds.

I'm sure I have a persistent, systemic low level of some sort of fungal infection throughout my body which never seems to go away totally.

I see on the notes that come with the injection that having any kind of infection whilst on Actemra could be problematic just as having a virus could. Do you have any thoughts on this?

Thanks
Frank

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