Starting new biologic

Well hopefully it will now do something for you. Around 20% if I remember rightly react well to the loading doses of Cosentyx, another 40% react well after 4 months. There’s another percentage (can’t remember it now) who do better once they hit a year. There does seem to be lots of anecdoctal evidence people settle on it much better once they hit a year.

I did pretty marvellously through the 5 weeks loading doses on 300mgs. Then I felt it didn’t last the full 28 days, I’d like it every 21 days really. Presently I’ve got this hip/upper leg issue which x-ray says nothing has stressed fractured. Still awaiting the results of the MRI on that. But interestingly as with all things PsA the fact I have the hip/upper leg issue means nothing else is bothering me like it was especially the feeling it wasn’t lasting the full 28 days. And the MRI last week has given me horrid rib pain on one side as I think I was lying slightly crookedly on the stupid table and trying too hard not to move for the 40 or so minutes I was in there.

On 1 November I’ll have done a year. I really don’t want to swap to yet another one until I’m well over that year. My whole intuition tells me this drug does like me and has so far been kind to me. Given my experience on a humira biosimilar last summer, this is so much kinder.

So now let’s hope you get properly going on it and it helps you.

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I had a similar situation with my hips, my Rheumy ordered a MRI of the pelvis, they said no arthritis in the hip joints, I had to Google it to find out what the problem was, enthesitis at the Bursa’s, I confirmed it with my pain doctor he will shoot them with cortisone a week after next.
I think I was already harping about this already, but with brain fog, everything is new and exciting every day!

This from the most imaged patient on the platform… :cowboy_hat_face:
When I showed this area to my GP a few years ago, he said, “that doesn’t makes sense that it would be a arthritis area, it doesn’t get any wear and tear”. But it does get inflammation! You can see the enthesitis in the MRI, I believe, the white area, just in front of the part that looks charred with a blow torch…
I looked at the STATS for the drug trials on Cosentyx, they assured me that my enthesitis will go away in 6 months… It went away in 3 shots of Cimzia, oh how I miss it…
BTW, never found any efficacy for having a loading dose of 300mg unless you had moderate Ps in the literature, I was hoping to find something to chew out my doctor with… :grimacing:
Even moderate AS only got the 150mg 4 dose regimen.

Sad to say, this is starting to feel like a repeat of my Stelara experience, which was no response at all. Plus I had a Rheumy that kept questioning if I really had PsA, because she was so incompetent to treat me. One of my first warning signs was when I went to a Orthopedic doctor related to the medical group, and he told me she was not very good…

But I will stick it out, if there is any chance that it will work, it is just that now I have quite high expectations after being fully functional for over 6 months!
I hope the fatigue has left me now, that was getting old…
Thanks for the encouragement!

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Had a surprise today, the biologics did not come! Turns out the monthly dose was approved by insurance but they had not approved the loading dose! But my doctor had already started me on 3 shots, and my next shot was Monday. My Rheumy came through and is giving me two more shots, so I will pick them up Monday, then we are putting in for the loading dose still, I can give some back. It is like drug dealing with these biologics, trying to get your medication on time…
She had just called yesterday, and I told her it was all straightened out and the shot was coming Thursday… Best laid plans… I went on about it not doing anything, but she reminded me that we only have a couple more choices. She said I could do every other week after the loading dose to “catch up”… The last one was a little better, at least I didn’t sleep for the week!
The medical is so messed up, they have one employee that just yells at the insurance companies and the pharmacies all day, she is pretty thick skinned… Just keeps badgering them, she looks like she gets most of the food bribes from Big Pharma too… :flushed:

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Update: My doctor gave me the two doses needed to finish loading dosage. She said I can continue loading “to catch up” by doing them bi-weekly a few times With five extra doses, and she will follow in two months. I am doing a little better, at least I do not feel like a rag doll, I forgot to mention the fatigue to her, as she cut me off when I told her about the enthesitis coming back, Reminding me that we are running out of choices etc., also that it was just supposed to be a followup on the meds. Sorry if I am repeating myself from earlier posts, you cannot read those when writing…
I went to my Pain doctor today, he gave me a cortisone shot in each hip At the bursa, (see photo of Charred spot) really is a nice doctor. He was asking how much the Tramadol helps my pain, I said 30% on the back pain but also great as a anti- anxiety drug, little known bonus about this pain medication! I said the 15 Norco help some for breakthrough Pain, but also make it less impactive. Since I space out the Norco over roughly 4 day periods, depending on the pain, no real dependency build up. With PsA, SFN, OA, DISH, DDD, EM and other acronyms I cannot think of right now, it sometimes makes “a Perfect storm” for pain and anxiety.

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One more Concentyx question: though the side effect is not listed, I get very dizzy and light headed after injection? Does anyone get that way with this biologic? or others? I think I had the same effect with a couple of others too, like Remicade and Cimzia. Not that I would stop because of it, I just lay down and watch the world spin round…

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I don’t get dizzy or truly lightheaded but I do get wiped out for a few days. For example I took it last Friday night and didn’t really have any oomph till yesterday. That’s a usual pattern for me now, I tend not to bounce back until the Tuesday or Wednesday after.

In my loading doses of 300mg every week, at the beginning I certainly had to sit for a bit after taking both injections. I’ve heard other people report the same when starting it. That effect lessened once I went on to once every 28 days dosing.

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I am really having issues with the fatigue, it is lasting the whole week! Bone numbing fatigue, where you can’t get out of bed. This is my 4th loading dose.
Still have not got approval for the loading dose and I am almost finished… :roll_eyes: That is messed up.

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Now I am getting tachycardia, and high blood pressure, 145/85 144 pulse while I eat my salad. I guess chewing sprouts is cardio when you Might have POTS. No other physical symptoms. I have gone to the ER in the past, but these days with COVID19, on a Friday…

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I think you need to talk to your rheumy Jon. By week 4 of the loading doses I was flying high on increased capacity and energy and feeling increasingly marvellous. Or it could be POTS. Whatever though you need to be talking to your rheumy.

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I was able to control it a little better yesterday, it was way up again, so I laid down on the bed and watched a relaxing ocean shore video, within 10 minutes it went from 145/80 135 pulse to 110/70 and 79 pulse. So at least I know I can control it some. Funny I am not excited or stressed, and my breathing is normal. I did have arrhythmia, so will call my GP tomorrow, and see him. I don’t think it is related to Cosentyx, but we will see, I have my last loading dose tomorrow. It is not on the list of side effects, and I do have small fiber neuropathy and possibly Sojourns.
Funny they say the treatment for fatigue on Sojourns site is exercise, how do they expect you to exercise when you cannot get out of bed?
When the heart starts skipping beats that is disconcerting…

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I had SVT for a while Jon, that sudden erratic heart rate really does give you a bit of a start hey?

I have no idea why it stopped but I haven’t had it in nearly 5 years. I’m super-relaxed though, my resting heart rate is 55 - 60 and I’m not fit. When I had the SVT my resting heart rate was close to 80 - in hindsight probably cause primarily by pain and severe environmental stress.

Hopefully once your disease gets more under control it’ll help that too. I checked mine when I was in a fair bit of pain and it was a lot higher.

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Did a self test this morning when I was laying down bp was 117/64 pulse 70 then stood up and after 2 minutes standing it was 110/76 pulse 111 so that might indicate Orthostatic hypotension, though I also get the high BP. I am totally resting when this happens, no stress at all. The above self test was just after waking up. The tilt table test should diagnose it.

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This last loading dose was not as bad fatigue wise… So maybe there is hope, now if it would just help with the disease.

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I have never understood why these things happen starting a new biologic bit I have learned that when they do, good things follow. I have been on Remicade a bit over a year now. I was on a six week dosing schedule. The plan was to go to four weeks if necessary Weeeeell that didn’t work some genius at medicare realized the typo that allowed this and fixed it. Except didn’t I can get double the dose I’m getting now if I infuse every 8 weeks which is actually more than if I wen to every 4 weeks. So we decide WTH and went with it. My office is only a couple miles from the infusion center. TWICE I had to pull over to rest. finally had one of my wifes delivery guys come get me. I slept all the way homehave no memory of the guys taking me to the house and no memory of Tenia and the girls getting home. But as far as exercise through the exhaustion, don’t underestimate the idea.

Sometimes it takes a bit of self motivation or pure Adrenalin. In this case our six year old took a dump off the neighbors tramp and End up with a class 3 displaced fracture of her clavicle (collar bone) Some how i was on high alert got her to the ER had a serious discussion with the resident about the value of figure 8 braces, had the XRAY department redo the images and was generally a PIA. Got her treated, drove home, even had the presence of mind as drove up my mountain past the neighbors house to tell he NO when she wanted to “play with her friends and jump just a little on the tramp” We got her in bed and I spent the next 9 hours on the computer getting caught up on few projects.

I get what you are saying, but the exhaustion comes from your body going to work on the inflammation not acidosis which is the normal cause. Essentially what happens is your body because of the break down of “inflammation” cretaes accumulation of intracellular lactate and hydrogen ions causing impaired function of the contractile proteins, thus the FEELING of fatigue. Hormonally you are actually suffering a form of severe depression. (not all unlike the depression that naturally comes with PsA

I’m not suggesting you “ignore” the fatigue and try to go about normal activities OR ignore what your body is telling you I Just want to reassure you that if the tepee catches fire you should be able to get out or if nature calls a terrible accident isn’t inevitable.

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Nobody else describes things the way tntlamb does. I guess I often experience an ‘accumulation of intracellular lactate and hydrogen ions causing impaired function of the contractile proteins’. But when my metaphorical teepee is on fire I can exit sharpish.

An emergency, preferably one with a good outcome, certainly reveals a lot about this disease and its mind-bending effects. A couple of years ago we had a big problem - the kind of thing that requires a lot of thought and prevents sleep. All I had to do was survive, offer support and think, pretty much 24/7 for a week or so. When it was resolved I breathed a massive sigh of relief. Then I started yearning for the alert, indefatigable critter I’d been.

There has to be some benefit in a level of exercise and mental / physical activity that is appropriate to any given PsA situation. However, keeping that up is really really difficult given the depressive straitjacket we can find ourselves in. Adrenalin bypasses the need for willpower but teepees aren’t usually on fire round here.

Jon, can you do some form of boring, tedious, gentle exercise? I don’t have the battles you have at the moment but I’m in solidarity with you from the other side of the Atlantic 'cos yet again tnt has reminded me that I need to get moving and push on through even though I’d rather crawl under a rock.

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So I am totally out of the woods now, the biologic has kicked in, the fatigue has lifted after one day, post injection, (probably to be expected) so I am full of “spit and vinegar” and will be able to get some exercise now.
Inflammation is down, so it has dramatically improved after the 5th loading dose.

Funny, still having trouble with the Cosenryx script, see if you Can follow this…
Doctor prescribes 5 loading doses, gives me 3 doses to start, specialty pharmacy says they have to prescribe the full amount, 3 weeks in insurance had still not approved the loading dose, they resubmit for 4 doses, meanwhile the pharmacy claimed they were shipping, the dose never comes, so I had to go to the Rheumy who gave me the last 2 shots, then insurance approves 2 of the 4 shots, but the pharmacy now says, the doctor needs to re-write the script to 2 shots instead of the 4, it has been 5 weeks back and fourth. I told the lady at the pharmacy, "you call my doctor, I am not going to make all the phone calls anymore…
The funny thing, I don’t really need the 2 shots now…

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That’s good news for this morning. Hope you get the script sorted out though.

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I do like the concept of the more the fatigue the more it is battling the inflammation, it is a fiery battle!
That bone numbing fatigue when it hits, is more then a person can bare just to walk across the room, that is why the thought of exercise was hilarious.

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That’s just it though - if it was fiery you’d have been in fight or flight mode. But it’s not, it’s brain-numbing. Anyway, you’re out of the woods & that’s what matters.

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Great hear Jon! I get a Stelara loading dose tomorrow (Crohns so they are not shy with the amount), You have inspired me to hope I can sleep it off overnight and be hopping about full of energy Friday. I’m certainly sick of feeling grey day-in-day-out. But of course now you guys have reminded me, off to do my Physio despite the grey blurgh blanket weighing me down!

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