Actemra Anxiety

[Lenore58]

I just got a message from a pharmacy to get my approval for shipping Actemra. My doctor said I will be having one injection a week as a steroid sparing agent. I read about how it lowers your immunity further. I feel nervous. Any thoughts?

[PMRpro Ambassador]

I've been on it and pred for about 18 months - can't say I have noticed any more infections than I had on just pred and I also didn;t find I had more infection on pred than I did before when not on pred.

[Lenore58 in reply to PMRpro]

I’ve just been reading through the previous actemra posts and feeling a bit reassured. Thank you.

[Lenore58 in reply to PMRpro]

Do you mask up in crowds?

[PMRpro Ambassador in reply to Lenore58]

No. I did while Covid was common, I don't now. I haven't knowingly caught Covid as yet. Don't want to!

[Lenore58 in reply to PMRpro]

Wow! Good for you! I had it twice: two months before PMR hit, and then just in August. I suspect them as triggers for both of these. But who knows for sure.

[Darkchocolate1 in reply to PMRpro]

What happens if you are on Actemrs and need surgery? Do you stop for a while? Does the PMR flare as a result? Unsure if I want to start it will bed a joint replacement at sometime in the near future.

[PMRpro Ambassador in reply to Darkchocolate1]

Not sure - it will depend since emergency surgery wouldn't allow for it to be stopped.

VersusArthritis says there should be a month between the infusion and surgery - they are administered monthly so surgery as the next is due would be ideal. And the s/c injections should be stopped 2 weeks before. Doesn't say how long afterwards though. I imagine that if surgery is planned, they prefer to delay starting it.

It's difficult to say if the PMR will flare - it will depend how long you have been on it I imagine and whether the PMR has faded at all in the meantime. At worst you would increase the pred - and some surgeons have a hissy fit about pred. Sometimes you can't win!

[Darkchocolate1 in reply to PMRpro]

Thank you for your reply. You have helped all of us over and over. My joint replacement is not yet planned but I was told my left hip is not far behind the right which I had replaced August 30th. I plan to wait as long as I can but don’t know how long it will be until the pain increases to where I must proceed with the surgery. I was on 10 mg of prednisone when I had the recent surgery and had several days of IV steroids in the hospital for ten days. I watched my blood pressure go low and then high and had higher blood sugars during those days. I also developed neuropathy in my feet which is no fun. I think I would be better off to get to a lower dose of prednisone before the next surgery and think Actemra could help. I have been unable to taper under 10 mg so far. At 9 mg PMR flares. I have had a few times when I had the symptoms of adrenal insufficiency as I tried to taper to 9 mg. It is a difficult balance managing PMR. I also have osteoarthritis and several bulging discs in my spine so sometimes the pain source is difficult to identify. Without prednisone I would have had no quality of life the last 3 years. My ESR sed rate has come down very slowly from 86 to 50 on my latest blood test.

[PMRpro Ambassador in reply to Darkchocolate1]

I suspect that even if you get to a lower dose of oral pred you would be likely to get the IV steroids pre/peri/post operatively to provide adrenal cover after a long time on pred. That exists and can't be changed. If it is known you will need it - I would try to discuss it with your surgeon because many prefer sooner rather than later as recovery is usually better.

[Darkchocolate1 in reply to PMRpro]

My primary care doctor tells me to wait 6 months before another joint replacement with general anesthesia. My surgeon says wait until your hip is fully healed. I am 77 and am told there is more risk from the anesthesia at my age. What have you learned about this? I have a friend who had both hips replaced in his 90’s. I am sure it depends on your overall health.

[PMRpro Ambassador in reply to Darkchocolate1]

A good surgeon wouldn't necessarily use general anaesthetic unless they absolutely must - a spinal block/epidural and light sedation so the patient is less aware of what is going on has many advantages, There is a lot of pulling and hammering which is a bit off-putting for the patient but recovery, pain management etc is better with spinal anaesthesia. So always worth asking - especially for the older patient.

[Darkchocolate1 in reply to PMRpro]

My hip surgeon insisted on general anesthesia and he spent 3 and a half hours doing my replacement. He said my hip was totally destroyed and I believe that based on the pain. Normally he said the surgery takes 75 minutes. I plan to find a different surgeon for my other hip.

[DorsetLady PMRGCAuk volunteer in reply to Darkchocolate1]

He may well have thought your hip was a mess and it would be a longer procedure than usual which is why he went for GA .

I’ve had 3 replacements. knee was spinal block -hip and shoulder GA… tbh I didn’t care what I had just pleased to get rid of the pain they were causing.

[SnazzyD]

It targets a particular mediator of inflammation Interleukin-6 which is often implicated in GCA. If your GCA involves this it could be a game changer because it will allow you to reduce the Pred because it is doing the lion’s share of the work. So it’s give and take . If your inflammation involves mainly other ones, it may not be as effective but there are plenty of people for whom it has been extremely beneficial. There is also a good body of research now behind it as a therapy for GCA because IL-6 does seem to crop up at the scene of the crime. You can just stop it if you don’t like it or it doesn’t work for you.

[Lenore58 in reply to SnazzyD]

Is there a test to know if you are one of the people Interleuken-6 is a factor in?

I just found out I will have a co-pay of $2700. per mo. for Actemra. I can’t afford that so I will get in touch with the Genentech foundation.

[PMRpro Ambassador in reply to Lenore58]

Pretty much everyone with PMR or GCA have IL-6 as the primary underlying cause of the inflammation - there are 2 others substances,

But yes - they can test to check your IL-6 levels.

[Mooreby]

Thank you for this information since it looks like I am headed to Actemra. I looked up the price and it is terribly expensive. I am sure my insurance and medicare will cover most of the costs, but we will see. I also looked that the majority of people are not on it longer than 2 years. Is that true for the people here?

[PMRpro Ambassador in reply to Mooreby]

That isn't really a valid question here since the majority of members of the forum are in the UK where the use in GCA is restricted to 1 year with some other restrictions for its use.

[Lenore58 in reply to Mooreby]

In reading through individual people’s cases, I’m seeing quite a few on it for longer than that.

[Sharitone in reply to Lenore58]

I'm one of the lucky ones, have had it for 22 months. I couldn't get below 15mg pred before it, and now I'm only on 4.5. I think that's worth all of the drawbacks!

[PMRpro Ambassador in reply to Lenore58]

In the USA only. And me, I've been on it 18 months in Italy. A few in the UK were on it longer because of Covid which interfered with the programme,

[PMR2011]

I’ve been on it almost 4 years. Game changer for me. Have been off Pred for 3 years. Feel good, no issues with infections. Had Covid while on it and it was a “mild” version. Otherwise I think I’ve actually had fewer colds than when I was on Pred. Down to injections every 3 weeks. Hoped to stop soon but decided to wait since lots of stress right now as Mom died 4 weeks ago and Dad is looking to follow suit soon. Rough fall! So figured to wait til the new year.

[Hoofprints in reply to PMR2011]

So sorry to hear about your parents. I hope you stay well 🙏

[Lenore58 in reply to PMR2011]

thank you for replying, and so sorry that you lost your mom with your dad to soon fall out. Hugs.

[DaveGCA]

I’ve been on Actemra for 4 months and have not had any increase in infections. It seems to have helped in speeding up my tapering Prednisolone dose and I do feel more positive in terms of my general mood.

[nallufl24]

I’ve been on Actemra for 22 months. Never had even a cold. I don’t wear a mask or take any precautions other than normally good hygiene. Even when I was on both Actemra and prednisone together I had no problems. I did test positive for Covid once and did not even feel sick. I tested myself because my husband had Covid and ironically he was very ill.

[Myfoe]

Thank you all for sharing! everyone’s answers have calmed my nerves a little I am in the same boat just received approval for one year oct to Oct I am in U.S. Reading all the literature was making me nervous if paying for it wasn’t scary enough I have great insurance but will still have a copay..

[Daisylady62 in reply to Myfoe]

I too am in the US and have been on Actemra since August 2023. I was nervous about it as well but Ive had no side effects so far. There is a co pay assistance program that you may be eligible for. I pay 5$ per month for 4 injections. The website is Racopay.com

[Lenore58 in reply to Daisylady62]

Thank you so much!

[Preacherball]

I am in the U.S. and been on Actemra since July of 2021 with the weekly injections. I am no longer on prednisone. I have had several nasty viral infections during this time, resulting in a bad cough with lots of congestion in my chest. When that happens, I stop injections until it clears up. I am just getting over another one. Other than that, I have not had any other side effects. No GCA flares that I'm aware of. Rheumy wants me to continue for 3 years, but I'd like to stop sooner, if possible. My medication is provided at no charge from the Genenrtech foundation.

[Lenore58 in reply to Preacherball]

Thank you for responding. My doctor ordered Bactrim to be taken three times a week as an infection prophylaxis. Were you on something like that? Or did they give you antibiotics only when you got sick?

[Preacherball]

Yes, early on when I was on 60mg pred., high dose, I was on an antibiotic. But after pred. was reduced, probably before 40, I no longer needed to take it.

[Lenore58 in reply to Preacherball]

Thank you. That’s what someone else reported as well.

[potterylady]

Hi Lenore, I read your bio and our stories are pretty much identical. I'm also in California, in the Bay area (East Bay) but from LA and the OC.

I was on Actemra for 1 year. Initially it helped me lower the Prednisone, but then I went too far too fast and with some additional stress, I had a major GCA flare that lasted 2-3 months. Horrific headaches, had to go back up to 35mg. Even though I was on Actemra, I wasn't able to taper very quickly afterwards this time. It's been very slow.

I was also worried about the risk of increased infections, although I never had any while on it. I decided to stop the Actemra a month ago and I actually have less headaches, but more hip pain (PMR). I'm currently on 25mg going to 22.5mg Pred.

I was also very fit before getting this disease. Now, I've gained weight and lost SO much muscle from the steroids. Any sugar or carbs really increase my weight quickly. It's a constant battle lately because I don't want to gain any more weight! 15 pounds is enough!

Are you in Nor Cal or So Cal?

[Lenore58 in reply to potterylady]

Hi, sorry for the late response; I somehow missed your message. I really appreciate you sharing your experience. I’m on the Central Coast. Going to message you privately; would be good to keep in contact and compare notes.

[potterylady in reply to Lenore58]

Hi Lenore, I finally messaged you back!