That is wonderful news, here’s hoping Enbrel gives you great results - like Poo mine were magical at the start too! If not, there are more things to try, and sounds like you now have a Rheumy willing to work with you. Yay!
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Oh wow!
Don’t we just love our rheumys - when they get it right, that is. It’s not easy to weigh up any doubts about them AND act on those doubts but you’ve done that with great results!
Really pleased to hear about the turn around. Good luck with Enbrel.
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Can anyone explain why a well functioning biological loses its punch? It seems very common amongst those of you with considerably more PsA years on me. What the heck? What’s with the biological dance?
Apparently antibodies. We grow antibodies to them and they lose their effectiveness. That’s one of the reasons most rheumies want to you to take a DMARD with the biologic as they’re supposed to inhibit growing these antibodies. But the testing on such antibodies is rife with false positives and false negatives so most rheumies don’t think they’re effective enough to rely on. But also we sometimes struggle to find the correct type of biologic attacking the right bit of the T-cell which is malfunctioning in us. What is malfunctioning in me might not be malfunctioning in you yet we both have the same disease.
Each biologic does something slightly different to another. If you think of the base of of a triangle ie the widest bit being the more general anti-TFNa ones like Humira and Enbrel, and then other layers being something like I’m on, Cosentyx, which is an interleukin inhibitor and only deals with IL17. There are other ones which deal with IL23 and however other numbered IL’s. And at the top presently are the JAK inhibitors.
It’s really early in the morning here so I’m probably not explaining it that well. But the way I think of our meds is that DMARDs are the slege hammers. Anti-TFNa ones the spears and as you go up the chain in the complexity of the med that spear gets more and more refined.
I’ve always thought though the approach to medicating us is somewhat irrational. As instead of spending time working out which bit is malfunctioning in each of us, they instead have just gone about refining the meds and then we get given the med and no one knows if it’s going to work for us beforehand. It’s all this ridiculous perpetual trial and error. Some people do tremendously well on Humira or Enbrel. Others like me don’t but they’ve no idea why not. That lack of rationality drives me bananas.
But I hoped this helped.
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Thanks @Poo_therapy, that was very helpful. I agree with you that there is an absence of logic/rational, especially if all that could be done was for the best of those needing prompt and proper care. But when many decisions are made with financial issues at hand, proper care is delayed or omitted altogether. So far, the minocycline has had no positive or negative affect on me. But I am somewhat concerned as to what the now 5 different meds will do to me. It seems like a lot to ask of ones liver and kidneys! My GP just put me back on Celebrex to help with pain management a I wean off of prednisone over the next 6 weeks. At the latest, I should be on a biologic by mid September. But as you know, all of this delay is for monetary reasons. I wonder what percentage of PsA cases are in short or long term remission as a result of Dmards alone?
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Hold on, the right therapy will come, probably not at onset for bureaucratic reasons perhaps. In my case had can’t remember if one or two years of cortisone shots and cortisone plus mxt before finally, as was about to have knee implants on both knees, the decision was made to let me have Cosentyx. The result was very good, only my long spell on cortisone may have been responsible in part for femur fracture later on. Of course had had a year of cortisone before for cancer therapy in 2004, and had osteopenia. Cancer therapy was also responsible for nafl which had when started psa treatment, but notwithstanding that after approx 3 years into therapy seem to be tolerating well enough thyroid medication plus osteopenia pill plus mxt weekly plus once a month biologic. Have the possibly self delusional belief that my carnivore diet has helped, in conjunction with medication, in keeping me fit enough to function with hardly any pain at the moment. Am glad stopped the cortisone of course. Just imagine , fell down on the road recently after two years of this healthy diet and leg did not break this time, merely brushed off Superwoman style the cobble dust and kept right on walking. Liver, glucose and triglycerides say thank you, and will soon test bone mineralization status if any improvement. All the best to everyone
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I never use the word ‘remission’ with PsA. Instead I call it ‘well managed’. There is in my humble view zero real chance of remission unless sometimes through pregnancy and neither of can do that given my age and your sex!!! And often then it comes back once baby is delivered.
I did get ‘remission’ from psoraisis though, following a really bad break in my shoulder. Within a week it had totally disappeared and I didn’t get another even spot of it for around 10 years and it never came back with any major flare since. So the shock of my shoulder fracture made it flee pretty much altogether. But the shock of a bunion operation ignited my PsA very suddenly indeed. The immune system is so complex but I truly wish they would spent more time understanding our triggers individually and work to ease them individually too.
But yes there are loads of people in your country and mine who do exceptionally well on just DMARDs. They don’t graduate to biologics as they simply don’t need to. In the USA it’s slightly different because access to biologics is determined by your insurer and most insurers now permit immediate access to biologics whereas your national funding mechanism and mine doesn’t. We both have the requirement to have DMARDs ‘fail’ for us before being able to access biologics.
Many rheumys are of the clinical view that immediate access to biologics is much better way to go. But the DMARDs still work nonetheless. I had a magical 7 months of utter bliss on sulfasalazine and had it not just stopped working for me I’d have been incredibly happy to stay on it. But I can literally tell you the day I knew it had stopped being effective. I have no idea of the stats on that though.
As regards what they meds might do to you? At least that is monitored. Personally I consider DMARDs mess up liver and kidney function far more readily than biologics. And sometimes even lung function. They also give you more daily side effects which can make daily life more yucky. Biologics have their own issues - the skin cancer thread on here being relevant, it seems.
As you know I’m on my third biologic now. I had/have zero side effects worth considering on two of them. Humira though hated me. It made me poo for England, reignited my asthma and had me wading through a impending sense of doom. I lasted eight weeks on it and all those issues resolved once I stopped it.
Our treatment protocols are though sometimes so challenging, especially at the point where you are at presently. I was as frustrated as you at that stage too. But at least now you appear to have landed with a decent rheumy. Things generally improve a lot faster then.
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I am a retired Nurse and one day I developed a fever of 103 and had a massive pain in my back right quadrant. I went to see a friend of mine who ran a clinic for employees on the job injuries. He took x-rays of my back and told me immediately I should see a rheumatologist as he felt I had arthritis. Of course I thought he was nuts but I did just that and after the very first visit and based on my history of a tiny patch of psoriasis on my scalp and elbow, along x-rays and physical exams oh my hands, and joints in general, I was immediately Dx with PsA, and started on God Injections. I have been dealing with it now for 38 years. I was thankful that where we lived at the time we had the best specialty care anyone could ask for but but when we relocated to another state, that quality of care significantly dropped. I have seen 3 Rheumy’s in the last 10 years as I have dealt with this disease for longer than a lot of them have been out of high school and being in the medical field I had that extra knowledge as well. What I am saying is absolutely get 2nd even 3rd opinions as I have discovered over the years definitely not all specialty Docs are alike. And most importantly all the side effects of these diseases are way too subjective to diagnose and the Docs get frustrated as well. Finally I have it settled in my head, this will not be any better at this time in my life so I have to just deal with it . But for the younger patients out there who can still work and be very active, find yourself the best Doc you can and do what is best for you. But if 3 Docs say the same things, it probably is what it is.
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