Hi all, it’s been a while and I have kicked back during the busy Christmas/New Year season. Tomorrow I will use the auto-injector for my 8th dose of Taltz. I was getting discouraged at month 6 and was preparing myself for another change. But in the 6 weeks, either I am slipping into a remission or the Taltz is starting to work. The deep, tiring, aches and stiffness has subsided quite a bit. I no longer walk with a limp due to knee and hip pain. My hands aren’t nearly as stiff and knuckle/finger pain is much less. I have to say, I probably feel the best I have since 2019 when diagnosed. Foot cramps and inner foot pain still has its moments but so much better. Constant pain is stressful in itself and having it tamed down makes one able to cope with other stressful issues in life. The worst lingering issue is the eyelid psoriasis. If I dare go 4 days without using Tacrolimus (Protopic), it gets bad enough to swell into my tear ducts and then my eyes water constantly and the itching burning is terrible. The Tacrolimus works like magic but has the side effect of leaving my whole face feeling sunburnt and really affects my sleep. Not sure why psoriasis is controlled everywhere else but my eyelids and a bit “down there”. But overall, be encouraged to hang in, when a biologic actually works, the quality of life improves dramatically.
Such better news. Don’t forget Talz takes a year to reach full efficacy so you’ve lots more time to improve more. It’s my personal view that all interleukin biologics especially the ones hitting IL7a or just 17 take a good six months to get going. I didn’t notice improvement on Cosentyx till the end of month 8 so you’re doing good.
Is there another topical you can use on the eyelid psoriasis? It’s got a severe sunlight caution which means you should wear sunglasses when using it all the time. No wonder you’re feeling sunburnt. I would seek a change on that. There are thousands of topical creams to try.
That’s s pretty solid update. That’s a long stretch of time to wait for a med to really kick in. Most meds it’s just a few months to see some sort of change
Thanks and that does give me hope. What I have noticed is that I feel like Taltz runs out of steam about 5 days before my next injection. It happened in the last 2 months and more noticeable in the last week. Maybe I’m just imagining things. Also, I wonder how the dosage is decided. It seems that body mass has no influence, a 95 pound person gets the same dose as a 200 pound person. (sorry Brit. friends…I can’t convert to “stone”) 
Oh wait…Siri knows 100 pounds =7.14 stone! Is it stone or stones? Math knackers me again!
That’s the disadvantage of some of these and the advantage of infusions. Infusions are weight based, injections aren’t
When I was on Cosentyx I always knew when I was entering the 4th week. I injected on a Friday and that week I wished Friday would arrive faster even than every other week.However I looked at on the basis at least it darn well worked so what if the last 2, 3 or maybe 4 days of each 28 day cycle were a little more challenging.
Now there is research going on with Cosentyx to allow weight determine the dose better. Presently that’s limited to psoriasis only sufferers. But no doubt in time it will rolled out to patients who take Cosentyx for PsA too. Those who take Cosentyx for HS are already on a much higher dose that even that proposed for psoriasis only patients. Do remember Talz is the sister med to Cosentyx since they both work on exactly the same thing namely IL17a precisely.
With my new med Tremfya its first review is 24 weeks. Cosentyx and Talz have a first review at 16 weeks. Tremfya takes two years to reach full efficacy too whereas everything else biologic wise takes a year to reach full efficacy.
Patience is really key with IL biologics but they are pretty magic when they work.
I really don’t think that’s true of interleukin biologics though. Their manufacturers don’t think so either. Which means attitudes and primarily patience levels have to change in order to get the best out of them. So many more of PsA patients are now being graduated from anti-TFNa biologics to interleukin ones.
Sadly many USA only rheumys split the dose and given a half dose every two weeks in face of such impatience from the patients and then so many of them fail the med faster than those that stayed on the full dose every 28 days. In the UK that’s simply not permitted at all.
The data is all there for rheumys to see for themselves too. But it remains patience and forbearance actually brings much better outcomes.
First of all, I am in constant amazement that PsA can be so completely different for all of us. I have been relatively lucky in that most of the damage done was prior to diagnosis, and the issues largely resolved. I’ve been on Taltz for a couple of years, initially to control the pustular psoriasis on my palms which was a nightmare. Several months ago my rheumatologist increased the dose to twice monthly, as there was some increased pain/swelling in my toes. The company is providing the medication, and the symptoms have abated. I have nothing but good to say about my experience, and I wish you the same success. Biologics can be pretty darn wonderful!
Thanks for the encouragement! My appointment with the rheumy went pretty good. Wants me to stay on Taltz for another 3 months, keep track of trends and then decide if increasing dosage. She said that it isn’t approved for higher dose except for the presence of psoriasis. Also wants me to stay on 100mg celecoxib (Celebrex) and stop going on and off as I have.
What the psoriasis eye cream issue?
Yes any anti-inflammatory helps better for us lot if taken regularly. You can reduce the dose but it’s still better to take it regularly if the disease activity is not yet adequately controlled. I’m not sure how Celebrex is dosed though as to whether 100mg is the lowest tablet you can get.
I take Arcoxia (Etoricoxib) it can be prescribed at 30mg tablets. The max dose per day is 90mg. So every day I can decide whether to take, 30mg, 60mg or 90mgs. I also find splitting the dose so 30mg or 60mg in the morning works better when I take 30mg in the evening too. I also like the fact that I’m making the decision how much I take based on my own pain levels rather than needlessly taking more than I need because that’s the way it was prescribed.
But it’s good to think finally Talz is helping you.
There is an issue especially with any of us in the older category and the very damaged by PsA category that there are limits as to good we might actually get on our meds too. Which can be something of a reality check as well as I fear I’m now entering.
Celecoxib is available as a prescription in 100mg pills allowing me to also self dose as needed. The maximum is 400mg/day but rare that it is prescribed at that dose as studies are showing common GI issues and stomach lining problems. The Protopic cream doesn’t bother me when used anywhere but on my eyelids it is a consistent issue. I need it twice per day to be effective but when taken at the end of the day it affects my sleep as my face feels hot and I’m flushed and irritated…but it does work. I like that it isn’t steroid based. So we don’t get better with age? Way to burst my bubble @Poo_therapy.
Sadly not, other age issues interfere too…