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How Do You Decide What Biologic To Start?

This question was asked of me recently. What biologic do you want to go on now? My doctors have asked me this before. I am on biologic number 9. Shouldn't this be a question for the healthcare team to figure out?

I am thinking to myself, why do these drugs stop working anyway? I believe the longest one I was on was around 5 years. I have been on them for over 20 years.

Do you think our doctors should ask us what we think, but most importantly what drug we want to take next?

We would love to hear from you.

Diane (Team Member)

  1. With regards to Rheumatologist [here in Australia they are currently the only entity that can prescribe PBS approved i.e. ‘discounted’ Biologics or Similar Biologics] has to date discussed with me the target IL & TNF.
    However having internal genital psoriasis, to have any form of quality of life restored, [waiting for my 4th Biologic] I have to try anything & everything otherwise…..
    I participate in four PsA - Pso forums & I am aware some patients have paused or stopped their Biologic et al. I understand that, as feeling nauseous, lethargic & ‘catching’ any cold, flu etc. is v stressful, swinging from one infection to another is no fun.
    I’m also aware Drs & Specialists are still not clear on which IL or TNF are ‘rogue’ & causing our bodies response. It’s very much a trial & error approach. So we must demand these health professionals should be trained ‘properly’ & ‘thoroughly’ in psoriasis. Not only being able to spell it, but to have intimate knowledge, which is an ever moving & evolving knowledge base, of its manifestations, it’s general & psychological impact both to the individual but the whole family.
    Harvard research has shown that every ten years, better than 50% of what we were taught or learnt, is now either wrong or superseded in a major manner. Part of the training should include EQ, they typically have a high IQ, however without EQ trying to interact with humans I.e. patients, is flawed at the outset. They used to call this perspective ‘bedside manner’, both my wife [a health care professional] have had to articulate this aspect to Drs endeavouring to treat us or our family. Admittedly in our cases they were not aware they had this important shortcoming, & thus were grateful. Just shows we have serious issues with the training of our Drs > specialists.
    Five decades of genital Pso has left me very perplexed with what some call ‘modern medicine’, it’s an oxymoron from my perspective.
    Anyway let’s get the conversations happening…….

    1. Hello , Sometimes I just feel like a guinea pig, but I do believe my health care team is doing the best for me. The one thing I have heard over the years was that I have the worst case of psoriasis they have ever seen. I stump them. There is so much that is not known about this disease.

      I do say that treatments have improved significantly over the years. I remember that stinky tar medication. I can still smell it 60 years later. I do think that one day there will be a cure, not in my lifetime. We have had so much improvement. A few years ago, I couldn't even imagine taking a shot that could make me almost clear in 3 months.

      Trust me, I have had more infections over the years than I can count. On and off of medications, changing them back and forth, in and out of hospitals. It has been a journey.

      Thanks for sharing so much great information as always. Do you think a cure is in the pipeline for us?

      Diane (Team Member)

      1. PS my typing this morning was ‘way off’ forgive my errors in the ‘above’ post.

      2. Hello , Thanks for some great information as always. You're giving me more information than some of my doctors. It's so great what you do in the medical community. It would be nice to have doctors who do understand psoriasis and just not think it's just a skin disease. This was said to me many years ago.

        Keep sharing - I look forward to the knowledge you can provide. I bet you most doctors couldn't even tell you what IL or TNF is.

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