I have been on Cosentyx almost three months. Went to doc last week and he said I was still hurting too much so I am now taking one shot every two weeks. He said for my size (6’5" and 300 lbs) I needed more and he wasn’t going to wait to see if I got better. It has been a week since I took the second shot after two weeks from the first one and I actually feel a little better!
The test is I am traveling this week. I am in New Orleans for a conference and I have been testing out my body by going on a few tours.
Doing well, except for a knee. Doc x-rayed it last week. Sent me an email and said nothing in the x-rays, so he suspects a torn miniscus (old age). I have been down that road twice on the same knee. It will just have to get better, don’t want to do the surgery thing again.
I’ll keep everyone posted. Now doc has to fight with insurance to get them to spring for two a month. $10,000.
Well that is good news! Not about the knee, but a scope operation is not very bad, (as you probably know). Sometimes you can also get spurs that dig into the ligaments. I had a flap tear on my right knee, it would flap and get stuck in the joint, very painful.
That is why Remicade is good, they meter the dose per body weight, makes more sense than a “one shot fits all” approach.
I have to see if insurance will pay for my increased dose of Remicade… So are they normally $5k or is one shot $10k?
Wonderful news, have just read about how cosentyx dosage needs to be adjusted to body weight, so it sounds like your rheumatologist knows what he’s talking about, very happy for you
An update. The Cosentyx every two weeks seemed to be helping, but, I have a little bronchitis now and can’t take anymore Cosentyx until it clears up. As long as I have a fever I have to hold off. Hoping the Keflex will knock this out soon.
Trip to New Orleans went well except my right knee is bad. Doc thinks I have torn a meniscus but says surgery is last option. Maybe it will get better while I am home getting over the bronchitis.
Update on cosentyx, have looked up price in Italy, although National Health provides it free of charge to patients in hospitals, and each injection apparently about 781 euros.
Have broken my hip bone and doctors have suspended methotrexate at the moment as am recovering from osteosynthesis operation, but said am not to interrupt cosentyx. So far, so good, hoping for recovery without having to resort to hip implant, at he moment have three months rest.
I can tell I am three days late on my shot. Doc said 10 days without a fever first. Back to knees feeling like they are full of glass. At least it appears the Cosentyx is working.
For those that started Cosentyx, how long did it take fro you to feel like it was doing something. After the bronchitis, I have had 4 shots and am going into my 8th week. I am having terrible muscle pain in my legs and arms,
Hi Tamac, haven’t had any experience with Costenyx, but if this is new - I’d treat it as a possible nasty side effect and consult with my Rheumy about it ASAP.
If it’s a normal PsA symptom for you, and it just seems like the Costenyx isn’t cutting the mustard, then I guess you need a serious discussion next scheduled appointment.
I can always tell when it’s about to be shot time and I’ve been on Cosentyx for a year. Some joint and muscle pain right before it’s time to call the pharmacist is typical for me. But the rest of the month I’m wonderful! I hope you feel better! And Cosentyx continues to work for you!
Just an FYI to you and others, you may want to look into Novartis Patient Assistance program regarding your costs.
I was just prescribed this biologic by my RA doc but I was skeptical because I have just recently changed my insurance to Medicare Advantage plan. This and other biologics are considered Tier 5, or specialty drugs and copays are 31%, or about $1500 per injection. I looked online at the program and was very surprised to see that I qualified for free prescriptions.
Just an update. Doc did take me off the Cosentyx after 9 months, he said I was not getting the kind of relief he wanted. I agreed. I waited a month and he is now trying Humira. We didn’t start with Humira first because he said the history of Cosentyx on Enthesitis was better than Humira, but now he says we have to try something.
By the time I was off the Cosentyx for a month I was in bad shape. Legs and back were very painful. Mid and low back muscles deep are hurting now, I’m sure the extra 60 lbs I am carrying around doesn’t help. Can’t find a shot to make the extra 60 go away!
Doc wants me to update him in a few weeks. I’ll have to go back and get some more freebies anyway.
Have my fingers crossed that the Humira will help. Warmer weather will help some too if we don’t wash away!
On another note, the wife had a partial knee replacement in mid February, she is doing well. I told her I wish that would fix my knees. Before I would let her leave the hospital I told the PT folks she had to be able to get up and down stairs because we live in a three story. I told them there was no way I could help her up and down. They did, kept her an extra day until she could negotiate stairs.
Glad to know you and your wife are progressing with therapies, sad to hear Cosentyx did not work out, guess therapies, like dietary reactions to foods, are not one size fits all. My younger sister, after perhaps a year of insistence on my part, has just been diagnosed w psa as well, poor dear, but her rheumy for example after initial tests prescribed sulfalazine I believe is the name, and not cosentyx. She reports improvement in pain levels.
