I agree. This disease is full of “waxing and waning.” Something works for a bit, then stops. Symptoms change. Some go away or “hide”, then pop back up! I am on my 6th (?) biologic (Humira) without MTX and things are going well. I do hope it continues for the next few years at least. BUT my psoriasis is starting to creep back, mostly on the skin at my joints. Figures. I wouldn’t be surprised if I had to go back on MTX later on. I wouldn’t reject the idea as long as it keeps my body functioning and my life happy. I refuse to go back to the way things were years ago.
So @Amos is remission possible, yes, but not permanent. It seems there has to be some body alerting event to jolt it back to average immune system standards. I would NEVER want shingles again but the remission was nice. Maybe it was a gift from my body for the shingles. haha. Probably not.
I am so happy for you!
What medication are you on?
My body stopped responding as well to MTX AFTER having shingles. My rheumy had me off MTX while taking Valtrex for the shingles. And when I started MTX again, I need a blast of Prednisone to get things under control. That was March. Now in June the last 3-4 weeks joints are flaring and I’m in pain I haven’t felt since starting MTX 6 years ago.
Hi, I’ve only been on Methotrexate and for 6 years. I went to the doctor constantly complaining of joint pain and stiffness since 2006, but they just kept giving me Meloxicam for inflammation. I was finally diagnosed in 2016 and rheumy tried Sulfasalazine and Prednisone before putting me on Mtx.
Humira is the one he said he’d try first on me if (when?) the Mtx stopped working. But he seemed to think it would be 10 years (why I don’t know).
Well, a whole lot of damage can occur in ten years. For many, MTX is a short term fix that rheumys use to move you on to biologics. I was on MTX and Humira and felt much better dropping the mtx. Sometimes the mtx is the cause of the fatigue and brain fog. There better be pretty good success if you are kept from biologics for ten years.
Mxt isn’t a drug which suits everyone at all. I couldn’t function on it. Tried it twice separated by a year, first time on tablets and never got out of my bathroom for a week, so I wouldn’t take another dose. A year later I tried it by injection and on the second week I landed in my bathroom for 5 days straight and that was the end of me and mxt.
Why does you rheumy think it’s still working? What is your PsARC score every time you see him, is it going up or down? If it’s not going down it’s not working well enough for you. And you at least need to add in something else.
Interestingly humira and I didn’t get a long either, it reignited my asthma, made me poo for England (not quite as much as mxt did though) and had me feeling I was wading through a sense of impending doom. So I was whipped off it after 8 weeks.
I had to try 5 meds before the 5th one decided to work. PsA needs careful monitoring to ensure you’re being treated as aggressively as possible in order to get your disease activity calmed right down. You certainly don’t just stay on one med for a arbitrarily decided amount of time. You only remain on a med if it’s clear via the PsARC exam (affected joint count of the 68 joints presently deemed to be affected by PsA) shows your score is reducing in number and you’re not getting any irreparable damage.
I’ve been through 4 or 5 rheumatologists and have never heard of that. No one asks much or really listens to what I say. They just prescribe medication.
I could only sleep 1 hour tonight because of the skin psoriasis outbreak. It’s probably the worst it has ever been up from almost zero a couple of months ago.
A PsARC exam is recommended globally to check and examine each of the 68 joints specifically deemed affected by PsA. It’s a hands on physical exam to feel for inflammation, tenderness and swelling, starting at your temples (top jaw joint) and ending at your last little toe joint and your last little finger joint. It’s an excellent way of monitoring disease activity since PsA inflammation loves to hide from ultrasounds and MRI’s. If your score increases your disease activity is increasing, if it reduces, the meds are starting to help. It costs nothing other than your consultant’s time. Sadly though it does mean he has to touch you properly and rheumys the world over seem to like avoiding that sadly! PsA specialist rheumys do it routinely every time you see them in person. It’s an excellent disease monitoring aid.
Thank you. Yes, I know I’ve been very lucky to have such success with MTX, my joint swelling all but disappeared and so did 99% of associated pain and fatigue. My only side effects were a slight headache & dizzy feeling the day after taking MTX, which I learned if I drank a ton of water, I could avoid.
So it’s definitely time to discuss with my rheumatologist if knee pain and joint swelling is returning after being off MTX for 5 weeks when I had Shingles. I just thought it was odd.
Hi poo_therapy, What is a PsARC score - is there an archives article or trusted website I can learn more? Google returned way too many results.
I see my rheumatologist every 3 months for a face-to-face office visit and bloodwork. Until post-shingles resumption of MTX in April this year, I had very little joint pain unless I’d exerted or injured myself since starting MTX. The bloodwork he runs is:
It’s interesting to hear that. None of my 4-5 rheumatologists did that. There’s only one doctor of those that I would describe as showing any genuine concern about finding a solution. One was okay. Two were absolutely terrible to the point of being unsafe, including the current one, but I’m stuck for the moment because of the emergency.
If you google it you should come across videos showing how its done. It’s simply a physical exam from your head down to each little finger and each little toe, marking on sheet which joints are tender/swollen or inflamed. There are 68 joints which must be examined. There’s also a body diagram which shows you all the joints to be felt by your rheumy. It’s interesting to compare this PsARC exam to the one done for RA (commonly called a DAS score) which only covers 28 joints. It helps to show you how more extensive PsA is.
Extreme medication failure that is causing the worst outbreak of skin psoriasis I’ve ever had after being mostly clear for years. It’s difficult to sleep or concentrate.
It seems that many rheumys take the short cut approach and prescribe what they deem best ‘cuz they think that you will end up at the same place with or without all the tests. Some of this is from experience and they might be able to diagnose very quickly, maybe laziness and likely overbearing patient load.
The test I’m talking about measures the effectiveness of a med though. Sadly the science isn’t yet able to determine which patient will react best to which med.
Take for example humira and its biosimilars. It did little or nothing for you and me @Amos but does work incredibly well for other PsA patients. And for an extensive number of years too. Having a PsARC exam regularly determines faster whether a med is working well or not. That’s why it’s so useful and indeed is so darn cheap too because there are no costly machines being used.
If for example @dazqz was regularly PsARC-ed and indeed his psoriasis appropriately measured too (as there are proper examinations protocols for that too), he would have been taken off Talz and put onto something else far quicker using things like PsARC exams rather than languishingly horribly with the thought he must stay on it (when it’s clearly not working for him) and possibly add mxt to it. And meanwhile he is feeling positively just dreadful.
Imagine for a moment if all your insurers in the USA and however the Candian system actually works, demanded PsARC scores before funding meds? That is what essentially happens in the UK (via NICE guidelines - our funding entity as the number of joints affected and previous meds failed guarantees funding) mostly however we also have our fair share of truly atrocious rheumys too.
But the work I do daily empowers patients in the UK to demand things like PsARC exams at every face to face appt in an attempt to their rheumy more aligned to what the funding entity requires. The by product of that is of course that the patient is fully aware and engaged in their own disease activity too. Rather than just feeling lousy and wondering if it’s in their own head.
It means from a patient’s perspective you have the chance to align your disease activity to a score so it’s less confusing and you don’t spend quite so much time doubting yourself and your symptoms and there’s a easy cost effective test which tells both you and your rheumy the same information. As in this med is reducing your PsARC score or opps you’ve been on this med for 6 (or whatever number) months and your PsARC score is increasing, we might have to think again about which med is better for you.
Also remember PsA is notoriously poor at showing up effectively in MRI’s or ultrasounds too to the point that PsA specialist rheumys simply don’t use them to find inflammation they are merely used to find damage. One of the ways you actually know you’re being seen by a PsA specialist or not is how much or how little they send you off for an MRI or an ultrasound. However PsA inflammation is very good at showing up in a PsARC exam. Hence that’s why your Candian specialists got every other PsA specialist using them through international forums like GRAPPA and whatever else. It was their work which put PsARC exams to the forefront of measuring PsA disease activity. Google a rheumy called ‘Gladman’.
Therefore if you’re a patient and you walk into a consultant’s room, ask for a PsARC exam. If that rheumy looks confused walk straight out of the room fast and find another rheumy.