Been MIA for a while, you all understand I am sure…
So had a follow up with my Rheumy we decided that Cimzia just stopped working, it was the best one so far, so kind of like jumping out of a sinking life raft.
She is switching me to Cosentyx, I start the five week loading doses Monday.
She did warn me about the possible IBS issues associated with the biologic, along with the usual side effects, death etc… My digestion issues have been fairly stable, I think they were mainly associated to dietary sensitivities then autoimmune, but I guess I will find out.
Any positive success stories regarding Cosentyx to cheer me up?
Cosentyx brought important relief and caused my being able to walk without crutches if remember correctly, did not stop it even when broke my femur last year, while did stop methotrexate during that recovery period. Have been on methotrexate once weekly plus cosentyx once a month combo now for a couple years or so, combine it with intermittent fasting and carnivore diet , folic acid, vit d, magnesium and occasionally a pinch of nosalt potassium as supplements, drink coffee no sugar and sparkling water, and am on my feet and ok just occasionally asthma allergy and then use sprays of cortisone or other, all the best
I found the loading doses at 300mg (not 150mg) to be simply fabulous. No abdominal issues at all either. It does dip after the loading doses and I’m sad to say I’m now struggling after 8 months on it. Telephone rheumy appt on Tuesday. The only side effect I suffered was sleeping really well after each dose. I consider that one a true bonus.
I was prescribed 300mg which I understand is the normal dose when a previous biologic has failed you. So I did 5 weeks of 300mg (that’s 2 pens) and then went on to 300mg every 28 days - again 2 pens done one after the other. As I said those 5 weeks were just fabulous. By week 2 or 3 I was 100% fine - pain free and full of capacity. It was delightful.
However as each 28 days progressed I kept feeling like I needed another dose by about day 21. That’s now gone down to about day 14. And sadly I’ve got something wrong with my hip presently so that needs checking out. But I’m waddling around like a duck now and a very grumpy duck I am too.
I guess my Rheumy is more conservative, or she knows the insurance would freak out…
Every biologic has been like that except Cimzia for the first 6 months. It works and cuts out to early… Cimzia had the best response to all the enthesitis pain. Remember I could not walk on my right foot, and it helped with both that and my hands and even my thumbs that I thought were OA… That is the scary thing about jumping into a new life boat, even though the other one has a hole in it.
I was told it was a clinical need to start at 300mg given two previous biologics failed me. Maybe that’s just the protocol in the UK. It does of course mean you have the opportunity to increase it too.
Ya, after five biologics failing you would think I would be a shoe in! She did talk about increasing the dose if we had to, she is having a follow up after 3 loading shots.
Well day two, not doing to hot. Just felt enthesitis for the first time in my hand since I started Cimzia back in Oct. 2019 But I will give it a chance. Kind of forgot how that felt, Cimzia was doing a good job on that.
Now the foot enthesitis area kicked in (no pun intended) today, that has been at least 8 months. This is our worse fears, when we think we might have thrown out the baby with the bath water by switching to a new shiny biologic! I realize it is the first shot, but would not think it would go the other direction with the first loading shot. I guess Cimzia is just leaving my system. The thought of the enthesitis pain coming back, and the damn boot, not being able to walk, is not a cheery thought.
I will give it the three weeks, then have a little talk with the Rheumy! I just happen to be getting a prostate procedure the same morning! So should be a fun packed day, coming home with a catheter for the weekend…
Well, apparently the brain can only focus on one pain at a time. Maybe you can choose what not to focus on? Wishing you all the best, quick healing and no infections!
First I can’t understand why your rheumy has only started you on 150mg. It truly is the protocol when you’ve tried and failed other biologics to truly blast you with this stuff in the loading doses - your rheumy isn’t blasting you with it on only 150 mg instead of 300mg. That could be the reason why your issues are returning with a vengence. Ahh just remembered - it’s because of your insurers isn’t it? Sorry.
After the first dose I was pretty ‘chilled’ for a couple of days. Slightly out of it really. Took it on a Friday evening and slept so well that weekend. That continued for the 5 loading dose weeks. And it continues every 4th weekend too. I look forward to Cosentyx dose day as I know I’ll have a nice decent sleep each night for that weekend. I was warned to take it on a Friday evening for that reason. I don’t plan anything that weekend either (not that presently one can plan much anyway) but it’s a weekend on the sofa or hammock really. By about Tuesday I’m back firing on all 4 cyclinders again. It can also give you quite a stuffy blocked up nose for a couple of days as well.
I’ve never felt like I would faint but usually prefer to remain seated more.
Took it on Monday, so now Thursday afternoon starting to wake up, still do not feel I can do anything that takes energy.
Yes, probably insurance, that is a problem here. I think the reason sh gave me 3 doses to start, and wants to talk after the 3rd dose, maybe she will formerly start the meds after that? They do not know about the free 3 doses.
This is not her fist rodeo as they say in Texas! She is gaming the system. She is also a top notch Rheumy so I trust she will do the right thing.
I did not do well when I did Stelara, not even a whimper of improvement with enthesitis, I was questioning the diagnosis then, “did I really have PsA?” My Rheumy was worthless, she was looking at my ravished heels and telling me it was OA. So she knew I was to much for here expertise, which was nil. Six months of Stelara and no improvement? This is pretty much the same type of blocker…
So I finally got the prescription sorted out, since they had given me 3 shots, they were trying to convey that to the specialty pharmacy, they just ended up giving up, and the pharmacy is going to send me all the loading doses again!
I figure this is good because no doubt I will need to double the monthly dose, I can use these extra shots as the extra second shot and it will get me by for the rest of the year.
I am sure the Rheumy will go along with that, if I stay with the biologic.
Today was the first day I got anything done, I have been so exhausted, With severe chronic fatigue and brain fog, it was difficult to do even the basics like cook and clean. Hopefully this next loading dose, my third will be better.
It is hard on my back to be laying around for this many hours!
I have a telephone appointment with my Rheumy Thursday, to see how I am doing. Still have puffy digits, enthesitis, muscles tension is always a indicator for me, calf, Thigh and neck, and back muscles. Must have something to do with Enthesitis and tendons? It affects my hands (of course) wrists, elbows, knees hips, lower back, middle and upper back, Jaw and neck. (Did I miss anything? ) oh ya, feet!
My digestion issues have been fairly stable, I think they were mainly associated to dietary sensitivities then autoimmune, but I guess I will find out.
) oh ya, feet!