You might be right about me being too nice but in our system we have to kind of suck up to the specialist and stroke their ego’s or risk being “black listed” and not being able to find one at all. The waiting lists are huge here. Because I don’t really know what to expect from the meds, I tend to settle with whatever is, is as good as it will get. It’s very difficult to have expectations…50% of normal, 70%, maybe 90% on a good day? Being without any exams or tests for 18 months, leaves me with self evaluation only…which has its good points but there are things that I would expect a good rheumy would detect beyond my ability. Now if I could find a biologic as effective as prednisone…I would be a happy man!
Notions like that shock me to the core. And regardless of whatever profession is demanding such behaviour, I simply can do nothing else but expose it as hard as I can as clear institutional bullying.
I suppose I come to all this as being a lawyer who used to train all these ‘medical consultants’ to give evidence in court. Often too telling some of them they failed badly and their services won’t be required in the future. So this level of ‘sucking up’ or ‘stroking egos’ is not in my DNA. It ought not be in any patient’s DNA frankly. It’s not what providing a medical service is all about. The emphasis being on the word ‘service’.
You will have heard about the present difficulties with our NHS. But that certainly doesn’t mean patients are expected to behave in the way you describe. Rather it makes patients more demanding, more often going to the media to complain too.
When Cosentyx started to work for me around month 8 after starting it, it was better than pred as it didn’t have pred’s sort of euphoria stuff in addition. It actually permitted me to feel normal. Yes I can still have niggles and issues - we do as humans anyway regardless of whether we have PsA or not - but I certainly was fully aware this med was working for me basically magically. My guess is that you haven’t yet found a med that actually really works for you. Leaving aside mxt and sulfasalazine, you’ve only tried Humira and Rinvoq isn’t that right? A better med might still be available for you. We do have an array of them to try. But also don’t forget the likes of you and me given our age are ‘aging’ too.
Aging? What aging? I was also on Leflunomide which was a quick failure as it made me sick. Thanks for your continued input @Poo_therapy, Its great that you have been stable for so long!
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Interestingly leflunomide gave me the runs when I first started using it. I backed down on the dose (Dr orders) and when I went back up I never had a problem with it
So I am back in the “zone”… “prettyzone” or prednisone as some call it. I got in with my new rheumy ‘cuz I was on a cancellation list. First impressions were good, did a very thorough joint examination and was accurate in her findings of joint inflammation. It was a good time to see her as I was flaring badly. I had 10 days off of Rinvoq and then had my first Simponi injection 12 days ago. New rheumy prescribed 2 months of 10mg prednisone and then a tapering for 2 months as a “bridge”. I am not a fan of going on prednisone but I have been too miserable to continue as is in this gap. The second day now at 10mg pred and the pain is easing off. After 6 days of no Rinvoq I had scalp psoriasis blow up like I haven’t had in 3 years…so bloody (British cussing) itchy I was losing my mind. Either the Simponi is helping or the prednisone is doing its thing and it has all but cleared up. Since I am prone to ponder the dr.’s advice and then alter things as I see fit, I might try dropping to 5 mg prednisone and I can always go up if needed. Good news is that prednisone has to be the least expensive med on the planet! Round and round we go!
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The Simponi will take time to work and more than 12 weeks too. Remember no biologic reaches full efficacy for a year. Yes really. So yes it’s the pred helping. Give it time before reducing outside of doctor’s orders as bopping up and down the scale of symptoms and temper tantrum consequent psoriasis isn’t the way you want to go. 10mg really is a low dose of pred in the big scheme of things. So be cautious before you decide you know best about when to reduce. Please.
Mostly I’m delighted your new rheumy coherently examined you. Did she give you a PsARC score? If she did - then she really has my vote.
A friend of mine took Simponi and it worked well for her for around 6 years. Now she’s on Rinvoq having has an awful experience with etanercept plus cosentyx. All of us react differently to meds as I’m heading into my 4th year on Cosentyx.
So patience Amos, patience.
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