My ex(doctor) was very against NSAIDs and prednisone together. The problem I’m having is getting off of pred so I can go on Celebrex. I was taking 400mg Celebrex when I had 3 herniated discs and found it really good for two weeks but seemed to fizzle out unless I went off for five days. What a goofy roller coaster! And no guarantee that it will work before Christmas or ever. I should have picked a different disease!
Yes I would never take steroids and NSAIDS together either. Your body seems to be a pred junkie though given your difficulty getting them down. Do note I said ‘your body’ not you. My mother had hellish issues with pred too. She was constantly offered it for COPD so nothing whatever to do with PsA. Her medical notes in Ireland had it well documented ‘no pred’ was to be given but when she needed emergency care in England that was a different matter. Literally my brother and I took it in shifts to be with her so no pred was snuck in given it was the practical solution to her issues then. It gave her roid rage horribly and then that in turn made her refuse to stop it. In your shoes given yet again you’re having such difficulty getting the dose down and off I would seriously consider not ever taking it again frankly. Do remember the steroid kickback issues recede in a couple of weeks though.
Thanks, I appreciate your personal story regarding your mom and prednisone. I never gave it a thought that we all might react differently to steroids and at differing levels. I agree, though breaking up is hard to do, I will end the relationship with P…next month! Maybe.
Hello there. Hope everyone bearing up ok with the challenges this disease throws at us.
I wanted to update after my gaslighting session with an inept rheumatologist. I took my complaint pretty high and have been seen by a very understanding consultant who explained that the other guy had misread my scan results and totally misdiagnosed me. She said I do have ongoing active PSA, and have had for the last 6 years, was very thorough and gave me a steroid shot in the butt!! I await biologic choices.
It’s so wrong that we have to self advocate in these situations, but for anyone in doubt, you know your body and when someone is talking nonsense.
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Well done you. Has mxt and another cDMARD like sulfasalazine or leflunomide failed you already? Biologics aren’t available in the UK unless two cDMARDS one being mxt has already failed you. Unless your diagnosis is AS rather than PsA in otherwords having significant spinal involvement.
Hi Poo
I’ve been on 4 Biologics. Consents worked well. The others were anti tnf’s which didn’t do anything/bad side effects 
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Isn’t it so stupid that your new rheumy somehow had the view that your previous ability through rotten continued disease activity as detailed under the NICE requirements for funding biologics was somehow all wrong? You do wonder why that level arrogance is even permitted to exist anymore. Don’t you? I mean where was his actual evidence that all those previous biologics weren’t necessary and your diagnosis of PsA was a fallacy?
Sorry my previous comment was made without reading back and noting you already had hit the bar for biologics funding in any event. So so glad you’re sorted now.
A few years ago I noticed that my rheumatologist had added fibromyalgia into her notes, without any discussion with me. Of course. The next time I saw her I questioned it, and she said that my psoriatic arthritis was well controlled and that the pain that I was experiencing was fibromyalgia. I explained to her that in fact my treatment is not working that well but she has been sticking with the current biologic because it’s working well enough.
You see what happened there? She knows that my biologic is only working well enough yet decided that I was well controlled and any pain that I was having was not from my poorly controlled arthritis but it was from fibromyalgia. We had a conversation and she did take it out
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Do you obtain a copy of the rheumy’s notes on a regular basis or did she tell you it was in her notes? Could you give a percentage as to how effective you believe your meds are working? Thx!
It was in the notes and I just occasionally look at my chart online
How effective are my meds? 70 percent? I don’t really know. I tend to have a fair amount of tendon pain on a regular basis. And we’re not even talking about my knees, which are mostly osteo at this point I think but who knows
We don’t have the option of looking at our charts online…yet. I always want to have some sort of measure of effectiveness of the biologics but haven’t got it figured out. I keep a health diary that is pretty helpful as I look back over the years. I’m in the middle of my 3rd month on Taltz and am patiently waiting for improvement. I guess we can always assume that we would be worse without them. If you are getting around 50% effectiveness on a biologic, would you change with hopes of getting better results with something else? Or maybe it would be worse and 50% is as good as it gets. I don’t know if I have ever gotten more than 50% so I can’t compare very well. I am pretty slow moving and very sore if I don’t take 300mg of celebrex/day. I’ve decided to use it instead of prednisone. Press on @Stoney!
The measure of effectiveness of biologics in the UK is your PsARC score reducing. I find it fascinating that the PsARC exam was really pushed by some fine Canadian rheumys yet you guys don’t use it now. That’s weird. In the UK we qualify for biologics when we have a PsARC score of 3/66 (tender joints) and 3/68 (swollen joints) or more. That’s written in black and white in the NICE guidance for funding the biologic. Usually someone’s PsARC score would be something like 8/66 and and maybe 12/68 so every 3 to 6 months after starting a biologic it’s expected those scores would be lowering if the biologic was effective or staying static or rising if the biologic wasn’t working. There is also the Leeds Index (LEI) measurement for tendon involvement which is a mere 6/6 which in my view doesn’t help us much as many of us will have a heck of lot more than 6 tendons joining the party. Again the Canadians have come up with a better way of measuring PsA tendon involvement called SPARCC which measures 18 tendon sites. And there is another one called the MASES which measures 13 tendon sites and some of them along the rib cage which can affect PsA patients so badly.
The PsARC,LEI, MASES, SPARCC are all varying points on the body which must be physically felt by the rheumys hands for tenderness and for swelling. We all know that PsA inflammation has a habit of not showing up on MRI’s or US’s but I can tell you when someone pokes or squeezes a spot or a joint inflamed by PsA you know all about it. And the beauty about all these physical exams is that it’s a simple physical exam which it appears no rheumy on your side of the pond does anymore. And sadly fewer general rheumys in the UK even know they exist too, but the PsA specialist rheumys do.
I do get all my joints squeezed and or moved during exams. Do I know if she’s keeping a count and creating a score? I have not seen that in my records at all so I could not tell you.
This is my second tnf inhibitor. The logic behind moving to a second drug in the same category when the first one failed isn’t all that. Impressive, but here I am. I’ve been on humira for 3 years now. My initial one was enbrel. It was already on its way out and then I got covid the first time and it completely pooped out.
I think part of the logic is that if it’s working well enough, why change it? Because then I would potentially wind up with a period of no disease control etc etc
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My mum was diagnosed with Polymyalgia Rheumatica (which I suspect was actually PsA, which I now have). She was on insanely high doses of Prednisone at the outset, but eventually was down to 4 mg daily. This was all pre-Biologics. She was a stubborn old duck, and detested the idea of being on such a “bad”drug. So, over and over again, she would wean herself down to nothing, then get really sick, end up in hospital for weeks/months and the cycle would begin again. Maybe, you have simply reached your ideal dose?
No medical basis for this, lol, just what I witnessed.
Good thoughts for me to ponder. I’m still at a point of hoping some biologic will do more than I have experienced.