Actemra injections. USA

[EmmaLaura]

I'm going to start these injections for PMR/GCA. I have been on prednisone for six years; have had to have IV prednisone last year for GCA symptoms; down to 15 mg prednisone now, tapering every two weeks down to ten and then one mg a month below that. I'm at the point that prednisone is damaging me and I want to get off it or back to 5-6 mg as I used successfully before for years. The flare ups are horrible and I have a new back fx T12, probably prednisone related. Appreciate feedback

[Klah]

I have had PMR For 3+ years....have not been able to taper below 7-1/2m. Have had 3 infusions of Actemra. No PMR pain since first infusion.

Had some breast tenderness in one breast a week or so ago....related?? Gone after 24 hours. I have just reduced to 5m this week...wrong week! My husbands brother died...funeral...travel...standing in the wrong shoes! I have a sore foot right now and a few niggles in my

PMR spots. Goes to show that you can still overdo it even when on Actemra. I was breezing along the last couple of months. Let us know how you do. I was feeling so ready to try something else. Hope you do well....the infusions are no big deal as far as administration. Best..

[EmmaLaura in reply to Klah]

I'm waiting for insurance approval then will begin the injections. So glad to hear positive news, thank you. I'll keep all informed. What a grueling journey!

[Klah in reply to EmmaLaura]

I do think I feel better taking less prednisone, even though the prednisone really worked for me...my rheumy really thinks I need to get off the prednisone. Trading it for another big drug, but hoping for remission....didn't feel I was going to get there, even using the DSNS method....every 1/2m attempt made me flare. We will see😊

[Marie1479]

Actemra has been life changing for me. Query my other posts for more info. I'm a fan.

[Klah in reply to Marie1479]

Have you had any small flares while on Actemra, from doing to much....and then recovered quickly, like in one day?

[Marie1479 in reply to Klah]

Yes, Just one, I was traveling and my bag was stolen. I got myself so upset. When I arrived in NY (home) I was stiff and fluey. It took me a few days to recover.

[Marie1479 in reply to Marie1479]

I was able to reduce from 12mg to 4mg in 3 months.

[Marie1479 in reply to Marie1479]

Also hair came back, no more blurry vision or lightheadedness and best of all no more nausea!! I'm slightly stiff in Neck n shoulders in am but quickly goes away. Nothing like how I felt prior to Actemra which can only be described as MISERABLE.

[EmmaLaura in reply to Marie1479]

Truly miserable

[Marie1479 in reply to EmmaLaura]

Once on Actemra you still need to be mindful of activity and stress.

[Klah in reply to Marie1479]

I think I am doing well with the infusions...3.

However, in looking at my notes from the last couple of months I see that I continue to do too much...tennis, golf, fishing, travel, etc...then I have a mini flare...."mini" because I recover the next day.

So I have tapered 3m in 3 months, from 8m to 5m....but I am happy. It is hard to stay "down" when you are not feeling the pain and have less fatigue. I do count my blessings😊

[EmmaLaura in reply to Klah]

I'm high energy,too. When well, I'm on the go and happily so.

[Marie1479 in reply to Klah]

My doctor told me that 5 mg is considered low dose. The fact that you are under 7mg is excellent.

[Klah in reply to Marie1479]

Marie, I could not figure out how to send a private message to you so I could ask a question. Just wanted to see what you think. I had my fourth Actemra infusion last Monda.

During the infusion I could feel my bra getting tighter and tighter. A few days before my last infusion 4 weeks previously, I had felt the letdown reflex in my left breast...the pain continued on and off for a week or so I guess. So. When I arrived for my 4th infusion I mentioned it to the nurse but she thought it was coincidence.

We started the infusion and I could feel my bra get so tight...could not wait to get it off when I got home. I have bought large sport bras for comfort, but pain still there. The pain is in the same milk duct along the side of my left breast that use to "clog" up when I breastfed my kids. Feels to me like the tocilizumab goes directly to that sight! I will call tomorrow, Monday and schedule an appt with my regular go...and schedule a Mammography too. I am still on 5m of pred, a low dose her (for 20 years) and thyroid medication .. otherwise no PMR Pain...sore feet sometimes, and fatigue. So my question is...did you ever experience the medicine Actemra going directly to your sights of inflammation?...elbow, wrist etc? Any comments welcome😊

[Klah in reply to Marie1479]

Sorry, additional information...the only other time I have had the letdown reflex and breast pain in same breast, same duct was 4 years ago when I had a breast biopsy in that same breast but totally different location. Biopsy was benign fatty tissue. I had the sore breast for months after that procedure!

[Marie1479 in reply to Klah]

Hi! I was going to private message you but I think sharing my experience may be important to everyone. I am on weekly injectables and have had absolutely no side effects from the Actemra except maybe acid reflux which maybe a combo of steroids too. I've been on Actemra for 4 months reducing from 12 to 5mg. I am stuck at 5mg because of a flare induced by a traumatic event at the airport. I had my blood work done on Friday to see if I still have inflammation. So far as your experience, I would see your GP asap and notify your Rheumy. It's so important that both doctors communicate with each other.

[Klah in reply to Marie1479]

Thank you! I will be on it tomorrow, Monday! Stressful, but don't want to up the prednisone and mess up the plan. I have read all of your previous posts and really appreciate your candor. Only reason I thought about a private message was that I don't want to scare anyone off the Actemra because my issues are individual to me I believe.

[Marie1479 in reply to Klah]

I think everyone's experience is important. The more we share the better in my opinion. One thing I have noticed in reading blogs about Actemra, most (not all) who have the infusions vs the injectable seem to have allergic reactions. One of our members on the forum had an allergic reaction to the site area of the injectables but I believe it has resolved. Going on Actemra was a good choice for me. I was having so many horrible side effects (high sugar and cholesterol, developed osteopenia, blurry vision, ect) on the steroids and just felt awful. Believe me, I was extremely nervous when making the decision to take the biologic but I trust my doctor and did as much research as I could and asked questions. I feel 100% better since starting. The real test will be once off the steroids seeing how long I will need to be on Actemra. I spoke directly to 3 individuals who have been on Actemra for more than a year. They do not have PMR. My son's step sister has Juvenile RA. She is 17 years old and has been on Actemra since she is 14. My best friend's sister (57 years old) has RA and has been on it for years, my co-worker who is a teacher has been on it over a year. She has RA and had to take a leave prior to Actemra because she was so sick. I also joined the Healthunlocked RA group. There are many members on this biologic for many years. My supervisor also has RA and is on another biologic. She said to me when "they" get it right you can live a normal life.

[Klah in reply to Marie1479]

Really appreciate all the info. I normally do really well with medications...even 3-1/2 years of prednisone has not been a problem. However, I do have a "weakness" on my left breast when it comes to "messing with it", I.e the biopsy 4 years ago.

I hope this does not spell the end of the Actemra for me because it has worked great otherwise.

[EmmaLaura in reply to Marie1479]

Not understanding ij vs infusions. Please expand. I thought I was to have ij for 1 1/2 hours every six weeks. Sound familiar?

[Marie1479 in reply to EmmaLaura]

I had a choice of infusions 1x month or self injection 1x week. Injection was more convenient with me as I work full time.

[Jim-CJ]

Hi EmmaLaura,

My wife had fractures on L1 through L5, plus T12. We will start Actema this month, but she is at 35 Prednisone, which might be a little difficult.

[PMRpro Ambassador in reply to Jim-CJ]

"which might be a little difficult."

Why? In the trials Actemra was started alongside the normal dose for GCA - which is usually above 35mg.

[EmmaLaura]

Could you explain your post, not understanding. Thank you so much!🌹

[PMRpro Ambassador in reply to EmmaLaura]

Which post EmmaLaura?

[EmmaLaura in reply to EmmaLaura]

In reply to actemra injections

[PMRpro Ambassador in reply to EmmaLaura]

Still not clear - but if you mean mine in response to Jim-CJ, I wondered why he thought Actemra with a dose of 35mg pred would be "a little difficult".