It's Seenie. Remember me?

General
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I used to post here quite a lot. And then I disappeared. You probably know that I’ve been working “behind the curtain” at Ben’s Friends, but that really is no excuse for not being here for the last six months or so. The truth is, my “behind the curtain” work has been about as much as I can handle, and some days even more.

You see, I’ve been struggling with our shared adversary. In early October, I got my first Covid booster (so shot #3). I had The Reaction, a couple of days of malaise which I expected to last for … well, a couple of days. It continued and continued. And then things didn’t get better, but they did get worse. I finally realized (duuuuhhh) that this wasn’t a vax reaction, but a flare. (And I will add that it’s still preferable to getting Covid, or even worse, long Covid.)

Long story short, I saw my rheum in Nov and she concurred that I was probably flaring, but wanted to be sure I really was. So I had a couple of months of waiting, during which I had a burst of prednisone which worked a treat. Except for those weeks, I had it all: the full constellation of aches, pains, swollen hands and feet, and of course fatigue. Crusty patches on my face. The pain gave me insomnia, so that compounded the misery. And something new: bowel cramping and … never mind, TMI. Why am I telling you this when you, my friends, know all about what it’s like?

Meanwhile, I was doing what I could on the admin front at Ben’s Friends. Once I’d finished that, I was so “done” (ya ya stick a fork in me) that I couldn’t even contemplate more time at the computer. Besides, I was trying so hard to ignore what was happening, I just wanted to crawl under a rock. But that’s hard to do if you live on the tundra with 3-4 feet of snow everywhere.

So…what’s happened? Well, Dr. Rheum decided it was time to ditch Humira, and try Cosentyx. I started that in February. Eight weeks later, the snow is gone, and I’m wondering whether I’m getting better. Some days I think I am, and some days I think I’m worse. The next 4-6 weeks should bring a verdict. I’d cross my fingers, but they are still pretty sore. Meanwhile, the Cosentyx jury is still out.

But now that I’m here (drink in hand, you will just have to believe me) bring me up to speed, my friends! How have YOU been? I’ve missed you.

Seenie

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Sorry you’ve been through the wars. Cosenyx (really hope you’re on the 300mg dose too) is a real slow burner. 16 weeks is its first review in the UK. Did you do well in the loading doses? I did but then it dipped afterwards and didn’t pick up again until month 8 (not dose 8) and has been working fine since now over two years. So hope it picks up for you. However since you did so well on a anti-TFNa one perhaps just another one of those enbrel, simponi etc might work better. I never did well on those, but have on Cosentyx.

However I had added bowel issues to my repetoire. Jury is out if they’re are Cosentyx based because I developed them only last summer and if it was Cosentyx based, the present research says they should have come on in the first 6 months or so of taking it. They found cell changes indicating Crohn’s on the biopsies and couldn’t find anything visually on the colonoscopy. Anyhow they started me on Azathioprine a good old fashioned DMARD. I’m now 4 weeks in and I’m very surprised but thrilled to tell you it’s working rather well already.

I’m still smiling at the disconnect about meds in the gastroentrology world and the PsA world. The gastro guys are so much more confident about meds working than the PsA guys. They’re used to them working well, the PsA guys aren’t. I now understand why. In PsA it’s really unusual to find a DMARD doing something useful within 4 weeks but in the gastro world that is more normal.

I’m also hoping that the Aza will bolster the Cosentyx just anyway. Not that it needs bolstering for me but somehow I still think it’s good to add DMARDs to biologics if possible.

Hang in there with Cosentyx - it’s an amazing med frankly if it works for you.

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How could anyone forget you? Having covid delivered the final blow to Enbrel for me, so I’m not shocked that the immune system being geared up could also cause a flare. Hopefully this works for you.

I feel like that’s one of the toughest parts, when a med craps out. For me, it feels like I’m starting all over again, and along with that comes the worry. I’m actually worried about my meds, but I’ll wait until next month to bring it up with my rheumatologist.

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Poo, thanks for the encouragement. Hearing that Cosentyx is a "slow burner"is actually encouraging for me: these things take so long to get traction, it’s good to know that it “ain’t over yet”.

Interesting what you say about the gut issues. As a matter of fact, something interesting happened that makes me optimistic. I’ve had on-again-off-again issues with cramping and diarrhea, which I thought was separate from my PsA. But I may be changing my mind. After a month of loading doses (4 doses of, yes, 300mg) I noticed no improvements. After two weeks, I got really bad cramping and runs which could not be explained away by what I was eating or otherwise doing.** When I took my Cosentyx, my bowels gradually settled, starting the day after C-day. That may be exactly what you are talking about: quick reactions from the gut.

Not much good news in the PsA department though, except maybe having a bit more energy. But then again, it is spring, the snow is gone and the sun is shining.

This disease really is a frustration. I don’t know how rheumatologists deal with it. I would want results! Fast! Like orthopedics! A few hours with a saw and a drill and they’re already walking better. LOL

Thanks again for the encouragement.

C

** I have regular colonoscopies, so it wasn’t terribly worrying. Gastro says “yeah, I guess your bowels are just a bit jumpy. No worries”. Hmmm…maybe we need to be looking at emergent Crohn’s.

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Well that really describes it, @Stoney: “Med craps out.” I told a friend that I was on a new med. She said “That’s great, you’ll be feeling fine again soon.”

Sigh, no. But I didn’t have it in me to explain. That’s what I love about it here: no explanations needed.

Thanks ,my friend.

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Hi Seenie. Sorry you have been having a hard time and hope Consentyx works for you. Although it took about 3 months to really work it was good for me for about 18 months.

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Hey @Seenie, this is great…it’s like hearing from an older wiser sister! These rough PsA roads just don’t go away, kind of like Winnipeg pot holes. (for those that don’t understand, pot holes are big holes in roads that tend to bust up the front end of your car…they have nothing to do with the cannabis “Pot” drug or its effects. Mind you, our church “Pot-Luck” meals have never been the same since legalization in Canada) OOPS, bunny trail, but I blame those on PsA too.
Does anyone know if any studies on “Aging with PsA” have been published? Or are we just supposed to wait until we get there and figure it out? Hugs and big hopes for an improved life for you Seenie.

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Nice to see you, Seenie… sorry to see you’re suffering so much right now.

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Sounds like you’ve got a lot going on at the moment Seenie! The link between Costenyx and IBD seems very unclear - they stopped a trial of Costenyx in IBD some time ago because they were worried they were making it worse, but a recent pooled analysis showed people with PsA on Costenyx had no higher risk of developing IBD than PsA patients not on Costenyx.

If you are having regular colonoscopies, are they taking biopsies to check for IBD? Might be worth discussing with your gastro, certainly I had a gastro declare I didn’t have Crohn’s from the visual assessment, but it was clear in the biopsies (though he knew better of course, so he didn’t change the diagnosis :roll_eyes:).

New med time is always hard @Stoney, isn’t it? I was off my infliximab for 4 weeks and ironically felt much better fatigue-wise (what was so severe I couldn’t work), I re-started it because I had a couple little heart flares, but now we have no idea what we are doing :joy:

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Sandy! How are you? It’s been ages. How are your feet? (or have I remembered you wrong?)

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Nope, never been done, but I’m beginning to think it might be worthwhile.

Sorry to hear about your church Pot Luck suppers. Have you appealed to the higher power for answers? Oh oh, sorry …

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Oh, Poo … thanks. So kind of you. It’s still early days I guess, but I’m really getting impatient for something positive. Interesting about the gastros’ time frames as opposed to ours, isn’t it?

Like the rest of us, it’s soldier on. One day at a time. Be thankful it’s not something far worse. We all know all of that.

Goodness, it’s good to be back on here with all of you. This really is home for me.

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Allan! How are things Downunder, mate? So it took you three months? Hmmm…I’m not there yet. So maybe there’s hope.

I’m beginning to remember why I joined here and why you all helped me so much back in '11-'12. There really is nothing like peer support.

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My feet hurt all the time, and my knees, and my hips, and my everything! I’m in a weird spot right now. Melanoma surgery in Sept 2020. Had to stop all PSA meds for awhile. Being off the methotrexate and Enbrel, I’ve noticed I was actually having weird side effects from one or both, which went away. My rheumy and I have decided to wait to start anything for awhile. Doing OK, managing flares with very small doses of prednisone for now. Who knows what the future holds, for now I’m slow but functional (with lots of rests, LOL). So nice to hear from you. Hope you can get your symptoms under control quickly.

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Gosh I thought all colonoscopies came with biopsies being taken as a matter of course? Why undergo them if not - why not just have the CT scan option instead?

Nothing was seen visually on my colonscopy, it was only the cell changes on the biopsies that told them of the potential for Crohn’s which then did frankly explain my bowel symptoms. But straight after the colonoscopy I was told it was unlikely I had any IBD. In the UK they don’t routinely put you out for colonscopies, I have a BIG issue with that and I can tell you it was an effort to ensure I was put out properly but I persisted because I knew they needed to do biopsies and doing the CT scan option therefore wasn’t sensible.

I think if you haven’t developed Crohn’s within the first 6 months on Cosentyx - it’s far more likely that whatever bowel symptoms you’re suffering aren’t Cosentyx induced. Cosentyx and any IBD symptoms are seriously contraindicated - it says all that on the PID.

The entire reason I’m presently allow to stay on Cosentyx is that I developed my bowel symptoms a whole 18 months in. I wouldn’t have been offered Cosentyx if I had bowel symptoms to start off with and I would have been taken off it had I developed any bowel symptoms within the first 6 months.

So the gastro guys started me on azathioprine a good old fashioned DMARD used for both PsA (previously certainly) any any IBD, but alongside the Cosentyx. And 4 weeks in it’s working well. Phew!

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If you’re looking at that then you shouldn’t be starting Cosentyx, that’s for sure.

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Well, that’s a new twist on having a bounce in your step :smile: :joy: :smile:
(Sorry, I just had to say something cheeky)

Merl from the Modsupport Team

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Cheeky talk about all things colonoscopy isn’t allowed here! :laughing:
At my last physical, my GP said that she has some patients who have been only on low dose prednisone (10mg or less) and doing as well or better than some on biologics. Doesn’t seem sensible to me as I don’t think prednisone will slow the progression of the PsA. But there is nothing like that prednisone instant boost to allow one to have a good or even great day. Seems to me that all the fancy expensive meds are very lazy but eventually get there. Tortoise=biologics, Rabbit=prednisone. I guess we do have to allow for a broad range of personal responses to the variety of treatments while looking for common ground.

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You are absolutely right @Amos, they have done enough studies to know that long-term low dose prednisone does not slow disease progression, just makes you feel better. @Allan was on maybe 5 or 7mg (jump in here and correct me Allan :joy:) for some time and I remember him saying that worked well for him - but that was in ADDITION to a biologic I believe.

I took it for 9 months and had osteopenia (in a steroid specific pattern) at the age of 38, so it wasn’t for me. Now too much (cumulatively) also kicks off the “what is the point” in my head, so it is a big no-no for me. This wasn’t the case until the last few years - I feel like the side effects have worsened over time the more of it I’ve been exposed to (though I sometimes take high doses - 100 to 50 a day - so it may not translate to anyone in low dose pred). Also, I wouldn’t wish weaning off it on my worst enemy.

A side note though that years ago when I was first diagnosed, there were some recent studies showing that 3 months of low dose pred EARLY (like within 3 months of disease onset) could help slow progression, but the effect did not persist after 3 months of medication, and wasn’t seen at all if commenced late (after12 months of symptoms).

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My rheumy says the same. But I’m with @Jen75 having had the benefit of a total of 7 unexplained fractures thanks to pred which I decided stupidly to take (not my doctors) for pretty much the first year of my PsA at around 5mg or lower too. It was a kind of very BIG lesson to learn too.

I was put on steroids for Crohn’s just a few weeks back. These ones were coated so they only released in your bowels. They were just 5mg. Glory be I couldn’t cope with the steroid fizz on them at all. I stopped them after 4 days. They helped too but that fizz was too much altogether. No more steroids for me ever frankly!

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