Actemra : Actemra has been really keeping my pain... - PMRGCAuk

PMRGCAuk

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Actemra

Leeleep profile image
15 Replies

Actemra has been really keeping my pain tolerable, however I needed a crown and was advised to discontinue my weekly shot two weeks prior to procedure. That was on February 26. I’m still off because the crown is not back from lab. I’m struggling severely with pain the last two days. This certainly proves to me that the shot works. Im going to call the company and find out if I can start up again because I would think the installation of the new crown should not be an issue. My appointment is 10 days away. 💜

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Leeleep profile image
Leeleep
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15 Replies
jinasc profile image
jinasc

Two questions:

What was the reason for discontinuing the Actemra?

I assume you are still on pred for the GCA or do you have both OMR and GCA, also what dose of pred are you currently taking.

Leeleep profile image
Leeleep in reply tojinasc

Dental work. A crown. Prednisone 8 mgs.

SheffieldJane profile image
SheffieldJane

Hi, I wasn’t aware that you had to stop Actemra for dental work. Alendronic Acid yes.

It is interesting and encouraging to hear that Actemra helps your pain.

I think your plan of action sounds good.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Stopping taking alendronic acid to have dental work is actually fairly pointless - once it is in the bones, it is in the bones. And the evidence thus far is that it will still be there the day you die...

SheffieldJane profile image
SheffieldJane in reply toPMRpro

How depressing. I thought I had read that advice here from someone’s doctor. I hope I dreamt it.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Isn't it? But even with AA, you wouldn't need to stop for a crown - it is only for invasive surgery, like having implants. But the problem there is that it isn't entirely clear in advance whether the bone would heal around the implant anyway once AA has been used. Which is MY main concern - they really aren't aware of the potential problems years down the line.

Leeleep profile image
Leeleep in reply toPMRpro

I use Forteo. Does it have alendronic acid?

HeronNS profile image
HeronNS in reply toLeeleep

Forteo is teriparatide, it is not a bisphosphonate, but they are concerned about long term side effects, cancer showed up in the lab animals, so restrict the length of time it can be used.

Leeleep profile image
Leeleep in reply toHeronNS

They only allow you to be on it for two years. Nobo

HeronNS profile image
HeronNS in reply toLeeleep

You are quite right. I'm correcting my post above. Forteo is teriparatide and you can only take it for two years. They are not sure whether it will cause cancer, and so they are being extra cautious.

PMR2011 profile image
PMR2011 in reply toSheffieldJane

Good luck with the crown Leeleep. Dentist visits are not high on my list of enjoyable activities! For dental work staying on Actemra and Alendronic Acid should be okay. It’s dental surgery you need to consider stopping. The Actemra because of the immune suppression and alendronic because of the potential side effect of jaw bone necrosis.

Hindags profile image
Hindags in reply toSheffieldJane

Actually, I didn't have to stop AA for a crown. A crown is not an invasive dental procedure if it doesn't include a root canal. Consulted with two dentists, endocrinolgist, and bone specialist. I was taking 9.5 mg Pred for PMR alone. I had been on AA about ten months at the time. Never have taken Actemra so that wasn't an issue. If there isn't an interaction between actemra and AA and no complicating factors for the crown...I am confused the recommendation too.

SheffieldJane profile image
SheffieldJane

I am probably thinking of my own front crowns that did involve root canal work. But as PMRPro has said AA stays in your body forever. It is a consideration though because I understand that some dentists are reluctant to treat if you are on AA. Or have I got that wrong too? I mean dental surgery really because of the jaw necrosis risk as PMR2011 points out.

Leeleep profile image
Leeleep

They only allow you to be on it for two years. I never heard what you are saying. That really concerns me.

SheffieldJane profile image
SheffieldJane

I expect that having a crown fitted is going to be fine. I didn’t know about AA making a permanent change though.

I was really pleased with my crowns, they were better than the teeth they replaced.

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