Of course I forget (wrongly) that some places don’t even have insurance to help pay the cost, let alone places like the UK (where I’m based) where such treatment is totally free to me, provided I hit the criteria in disease severity to be entitled to be funded for the meds. Do you have insurance and it’s just the copay that’s high or are you funding it all yourself once the manufacturer’s discount expires???
I haven’t read any studies but I can guarantee the studies available here would show a far better chance of a mere 20% getting an improvement though. Otherwise the NHS wouldn’t fund it and it wouldn’t be available to me.
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It seems a little näive to me that you believe that the NHS wouldn’t fund the drug unless it offered a much better chance of a 20% improvement. I don’t know what criteria the NHS uses when it selects its formulary (or how much Britain is paying for 300 mg of secukinumab), but the FDA and most clinical trials use ACR20 as a “goalpost” criterion for effectiveness. Check this clinical trial of secukinumab, where 62%, so more than 1/2 but less than 2/3, of the patients using 300 mg secukinumab had ACR 20 (i.e., 20% improvement) as compared to 27% of placebo users: https://www.ncbi.nlm.nih.gov/m/pubmed/29550766.
The drug is too new to have long-term results on radiographic progression, which takes place over years, but a 52-week trial using the modified Sharp scale showed .5 points of progression in the placebo arm versus .08 for the 300-mg secukinumab dose (starting scores were 13-15 out of 488). That .5 points of progression is considered “nonprogression” in large-scale clinical trials for RA and is significantly lower than 12-month progrssion in placebo arms of other studies (like this one https://ard.bmj.com/content/62/7/597.full ), and given that there were only about 220 patients in each treatment group and 332 in the placebo group, the jury must be said to be still out on the effects of secukinumab on radiographic progression in PsA.
As you might have guessed, I have a medical background. In fact, I work freelance as a copy editor for biomedical journal articles.
I self-pay for all my medical care. I moved from the USA (where secukinumab is priced at about $5,000 USD/3900GBP for a 300-mg dose) to Mexico (where the same dose costs the equivalent about $900 USD/700GBP) partially because I can’t afford both to purchase medical insurance and to pay co-payments and deductibles in my “homeland”. No joke, my cash-pay prices for medical care in Mexico are about the same as my copayments in the USA when I used to have good private insurance.
Novartis supplies the first 4 weekly loading doses for free in Mexico, and then the first year is discounted by 32%. The cooler with the 4 free doses arrived with only 3 doses (It’s true what they say about corruption in Mexico). The initial loading recommended by my doctor is 5 weeks of 300 mg. I’m “only” out for two discounted doses so far. Still not cheap for a person like me, on a fixed disability income. As I said, it’d have to be a miracle to be worth the price to me.
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Well, I guess you know the Leflunomide was reversible that time…
But given your background you’ve probably found the studies that show it’s less likely to be reversible if use is continued for more than 30 days after the neuropathy commenced… so if you start it again, who knows…and given there are so many other options for PsA (other than Costenyx and Leflunomide), surely it would be with exploring what these are?
I found neuropathy (given it was not from Leflunomide, nor was it just numbness but progressed to other symptoms) to have a large negative impact on my quality of life, I wouldn’t want to risk that if there were still other options open.
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I can certainly understand your decision to stay away from leflunomide, and I’m saddened to learn you had permanent nerve damage.
My desire to go back on the leflunomide is influenced by 1. the truly amazing results I had from it; 2. The sensory-only nature of the neuropathy (very similar to the carpal tunnel symptoms I developed back when the undiagnosed PsA began destroying my wrists, but in the feet as well); 3. the prompt remission of the numbness when I quit the drug; and 4. A justifiable dread of starting any unfamiliar drug due to the fact that I, personally, have been hospitalized for two, 1-in-1,000,life-threatening reactions to unrelated drugs (yes, I’m one in a million!). So risking residual numbness for the benefits of several months of being able to walk for miles, dance, climb stairs, open jars, shake hands, etc., etc., seems a worthwhile trade-off for me!
As I used to tell my own patients, every person is a biochemical individual!
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The NHS (or rather NICE - its funding board) is most likely paying whatever the manufacturer asks it to or whatever deal it can get, given no private medical insurance policy in the UK funds biologics as they exclude all chronic diseases. However we patients can’t access funding for biologics unless at least 2 DMARDs have failed for us and that we present with 3 or more swollen joints and 3 or more tender joints. And the rheumy must start you off on the cheapest biologic first - although there is some wiggle room dependent on the severity of your disease and whether your psoriasis is also off the wall.
So for me who had severe psoriasis as a teen but virtually none now, everything funding wise is solely based on PsA and how it effects me. Two DMARDs failed, one actually worked well for around 7 months. Then solely because my joint score (PsARC) warranted it, I was started on a biosimilar for Enbrel which worked but was too inconsistent. Had 3 straight months out of 11 where it did its job. Then because I had reacted positively to one anti-TFNa one, the protocol demanded I be started on a biosimilar to Humira - the other anti-TFNa one. That hated me from the first injection but it’s only 8 weeks later I’m finally allowed to stop it. I could have stopped it earlier but possibly that could have an effect on my now funding for Cosentyx, as it does help if it’s a proper fail.
So my rheumy assures me given she sat on the NICE Board for the approval of Cosentyx that I have a decent chance with it. However she won’t approve it has failed me until the expiry of 12 weeks. So we’ll see.
I’m eternally grateful that all this is free for me given I’m a UK resident. I’m not though a UK citizen, I remain an Irish citizen. However I still work full time albeit from home mostly so at least I pay shedloads of income tax - that helps me on an emotional level if nothing else.
But if my PsARC didn’t warrant biologics regardless of how much pain or ethesitis I had, I couldn’t have availed of biologics at all. I’m lucky that my joints like to swell too, some people have joints that don’t like to swell at all.
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I think it will take longer than 4 weeks. It worked for me for a while, but took several months to feel it. Doc decided it was not working enough after 9 months, and changed me to Humira. I have had to skip it for 4 weeks thanks to shingles.
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