(Tue-16-05-2023, 23:19 PM)Raxyl Wrote: Great to hear Fred, long may it continue.

Thank you Craig

When a person has a long-standing chronic illness, going from doctor visits every six months to every 12 months is a milestone, something to celebrate--stability, success in treatment, better quality of life.  

Does your doctor speak French or English?  

For the nausea, though, how will you discuss it with her after the next injection in four weeks?  Can you call and report to a nurse?  Send an email?  

I'm happy for you, Fred.  

(Sat-20-05-2023, 14:12 PM)Forest Walker Wrote: When a person has a long-standing chronic illness, going from doctor visits every six months to every 12 months is a milestone, something to celebrate--stability, success in treatment, better quality of life.  

Does your doctor speak French or English?  

For the nausea, though, how will you discuss it with her after the next injection in four weeks?  Can you call and report to a nurse?  Send an email?  

I'm happy for you, Fred.  

Thank you FW, yes it does feel good she has only done it to me once before when I was doing well on Stelara.

Yes she speaks English, part of her training was in the UK.

Yes I can phone her, but as she is now the head of department and gets very busy so not always available to talk. But I can email her too or ask for her to call back if I need to speak to her.

Update time: Took my first 8 week maintenance dose 2 x 160 mg and boy do I need this to kick in and work quickly.

Around 2 and 1/2 weeks ago I noticed some pain in both shoulders, arms and wrists and this past week it's got progressively worse to the point where my whole left hand side shoulder, arm wrist knuckles are useless (not good when you are left handed) the right side is also painful but not as bad as the left.

So I'm hoping the shots will kick in quick like it did when I first started it as pain killers and buckets of merlot are not helping.

Psoriasis has also started coming back a little in the usual stubborn patches, not bad but I can see and feel a change.

Psoriasis score up from 1 to 4.

Psoriatic arthritis score up from 1 to 12.

That sounds so awfully painful.  Clearly, the Bimzelx has worn off.  Clearly, it was working until it did.  Painful but important data to collect on you.  I can't recall if you can have the doses more frequently or not.  Can you?

(Sat-10-06-2023, 14:31 PM)Forest Walker Wrote: I can't recall if you can have the doses more frequently or not.  Can you?

It is a possibility, but we decided to give it a fairer try to see if it gets better over time. There are also some trials going on with 1/2 dose every 4 weeks, so it's options still available but I'll hold them on the back burner for now.

What is the expected timeline for the medicine to "kick in?"  Immediately?  Over a day or two?

(Sun-11-06-2023, 13:38 PM)Forest Walker Wrote: What is the expected timeline for the medicine to "kick in?"  Immediately?  Over a day or two?

That's a good question FW, I don't think there is a timeline as we are all different. I remember my first bio "Remicade" I felt it worked whilst having the infusion, but surely it was the placebo effect. Stelara was another quick acting one for me, but Bimzelx has been the fastest ever.

Would it do the same for you or others ? we just don't know. Some do great on a treatment and maybe never change, others like me and someone like mataribot just never seem to be able to sustain a long treatment. Is it the severity of the condition, is it the persons resistance, is it our weight, is it ...................... well anyway I think you can see where I'm going. We are all different and it's not an easy problem to deal with.

Most bio's are stopped around week 12 - 16 if there is no improvement, some have given me improvement much sooner than that but have failed a few months or years later.

So no there is no answer to your question as it's what works for me may not work for you and there is still not yet one suit fits all when it comes to psoriasis or psoriatic arthritis.

All I know is after my years of having both I just have to roll with the punches. 

Looking back at ways of treating Psoriasis a few decades ago, I think there must have been a long period of ineffectual treatments.  When did the biologics begin to appear?  Was that the late 1990's?  Those brought relief that may have seemed like magic after so many years of suffering under older therapies that really didn't help much.

I hope that research will continue and that someday a simple and pure cure comes along.  But until then, as you say, roll with the punches.  Ouch!  That one hurt.  

Do you think that your varied experiences with this blasted disease has taught you a lot?  I think you are good at observation and taking things in, maybe mulling them over, and arriving at understandings.  Or maybe that's just your nature from the very beginning of your life and not something shaped by Psoriasis.

(Mon-12-06-2023, 14:04 PM)Forest Walker Wrote: Looking back at ways of treating Psoriasis a few decades ago, I think there must have been a long period of ineffectual treatments.  When did the biologics begin to appear?  Was that the late 1990's?  Those brought relief that may have seemed like magic after so many years of suffering under older therapies that really didn't help much.

I'm not sure when they were first used for psoriasis, my first one was Remicade I think around 2005. Before that I used to just put up with it as I wouldn't take Methotrexate, but it won in the end and I had to seek help.

(Mon-12-06-2023, 14:04 PM)Forest Walker Wrote: I hope that research will continue and that someday a simple and pure cure comes along.  But until then, as you say, roll with the punches.  Ouch!  That one hurt.  

There are more in the pipeline, but I don't think they will ever find a cure as it's so difficult to treat and effects us all in different ways. Plus who would invest in a cure ? wouldn't your money be better spent in something that people will always need to control it. It is after all about investors and money.   

(Mon-12-06-2023, 14:04 PM)Forest Walker Wrote: Do you think that your varied experiences with this blasted disease has taught you a lot?  I think you are good at observation and taking things in, maybe mulling them over, and arriving at understandings.  Or maybe that's just your nature from the very beginning of your life and not something shaped by Psoriasis.

Yes it has taught me a lot plus running Psoriasis Club keeps me informed on how others cope and what is being used to treat it. As for nature .......................... I just make life up as I go along.