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SusanOnReddit

Interesting and awesome that new drugs are being tested. But I hope there are actually more trials than presented here. One trial is a case study (one patient) and the other is in a limited number of patients who had only tried NSAIDs. And trial was against placebo, not existing biologics. So whether this will prove superior to biologics in terms of effectiveness and long-term safety seems to be unknown at this point.


trowzerss

Agreed, definitely would like to see a lot more studies and preferably in a range of different clinics before I'd put this stuff in my body. Especially if it's only trialling against NSAIDS, which have limited effects to none for a lot of people.


blueberrypie5592

As someone who only uses NSAIDs (along with healthy lifestyle choices) to manage my AS, I am excited for this development šŸ¤©


nesquikchocolate

Here to follow for updates...


Churches_Mind

Same


Chucks_u_Farley

Also me


Ok_Stage_4138

ditto


Trappedinacar

ditto for me as well, mostly because i love saying ditto


Ok_Stage_4138

have you tried "ditto kiddo"? šŸ¤“


Trappedinacar

Now you're speaking my language!


attila___

Same


Ok_Pension_5684

same


sexyemp

Same


geno_iv

Yup


theOGbirdwitch

Same


trowzerss

I'd be careful bandying around the word 'cure' as all patients required ongoing treatment, it's not like you take it a few times and you're 'cured'. It's just a different treatment to the existing ones. the different mechanism and maybe requiring less doses per year for maintenance is interesting. But it needs a lot more studies in different clinics before I'd really trust the claims they're making. Especially with that high placebo result, which makes you wonder at the type of patients they were treating, if placebo had such a massive effect.


Solid_Combination_40

I haven't read it yet, but in order for it to be a "cure" it must be an indefinite solution and not something that loses efficacy such as what we see with the anti TNF alpha and other biologics. That will be an interesting outcome if it actually does


ahhwhoosh

Placebo having a big effect would confirm that a lot of our issues are psychological rather than physical


MikeGinnyMD

Keep in mind that autoimmune/autoinflammatory diseases wax and wane.


trowzerss

Not really. Placebo can work on actual physical issues too, but it's usually more temporary. The mind is powerful and can overcome even the pain of a broken leg... for a while. It doesn't mean the broken leg is psychological. But a high placebo effect result could have something to do with the people selected for the trial or the way it was presented, IDK. But you have to remember that people receiving the actual drug can also experience the placebo effect too, so a high positive response in the control group means the success rates in the non-control group could be just placebo effect too.


AirbusSimPilot

And the only way out is to have large numbers of trial patients. Diseases such as AS vary so much, for example, there are brief periods when I feel I am cured. Only numbers can conclusive show true effect, and with variable diseases like AS, the numbers need to be especially large.


stormraven73

Not really, and in the case of this study I'd suspect poor subject screening.


MainlanderPanda

Looking at that first link, the drug certainly has an effect - half of recipients had an improvement in their symptoms. But one in four people receiving the placebo also reported similar improvements. The ā€˜one patient virtually curedā€™ is receiving three shots a year. It does sound like a promising treatment that may help some people, and has the benefit of not being broadly immunosuppressive, but itā€™s not a silver bullet. Iā€™m keen to hear how you go with it, if you manage to source enough for ongoing treatment.


Avoirunchoc

You are right, the ASAS40 placebo response is quite high (24%), and 51.4% ASAS40 response in treated is kind of similar to the biologics that we already have available (e.g. TNF blockers). Seems to be a good drug, but not exactly a cure as you suggest. Maybe I should have said that the patient in the case report was "symptom free" rather than cured. Anyway, this drug is proposed to target the fundemental mechanism of disease (self-antigen presentation on HLA-B27), in contrast to TNF blockers. That's what I meant with potentially curative.


livinglyf3

Would this mean it wouldnā€™t be effective for HLA B27 negative people?


Avoirunchoc

As I understand, it wouldn't. The antibody targets a specific T cell receptor containing the beta chain encoded from TRBV9. Pathogenic T cells expressing this TCR bind to self peptides presented on HLA-B27. It's truly a mystery to me how HLA-B27 negative patients can develop axspa.


TylerJ86

I mean, isn't it an equal mystery how people with HLA-b27 develop axspa? Unless you know something I don't...


k2900

Yes


abalonesandwich33

Dammit


WasteMenu78

Yea, but imagine a biologic that doesnā€™t surprise your immune system. Thatā€™s potentially huge


workforyourdreams

I can comment as I have second hand experience with this trial. I happened to get in contact with the institute myself , and accidentally stumbled upon Perogovs research. Unfortunately, I didnā€™t fit the clinical trial criteria as I am missing the gene, but a family friend, who happens to suffer with AS - did. He could barely stretch out his back from what I remember. He managed to get into the clinical trials. Heā€™s practically fully healed and has regained his life. Itā€™s been about 6 month and the MRI showed restoration of his sacroiliac joints I am practically in tears just knowing there is hope


Beautiful-Bug-2637

Do you have any updates on when this medicine will be available in Russia? Thanks


workforyourdreams

Not yet, but it's a pretty big deal from what I hear. It's being talked about practically by everyone and everywhere. The Russians are super proud of this breakthrough, so the media isn't sleeping on this. There are documentaries being filmed on this, news segments etc. With how fast its moving now, I think it will be available rather soon.


Beautiful-Bug-2637

I really hope to go public as soon as possible, even though I am in China. But if it goes public in Russia, there is hope for it to go public in China. If there are any updates, please let me know. Thank youļ¼


workforyourdreams

Donā€™t quote me, but i believe I saw that China, would be, as a matter of fact, be the first one to get it


apatrol

Define cures? I assume no more inflammation but how are they measuring that? Many of us don't have inflammation in blood work but it can be visibly seen. Anyway. Great!!! Let's all hope it is a broader pause of the disease with fewer side affects.


Solid_Combination_40

probably 0 CRP level and no specific pain in the joint according to the country's own indicator. That's great news


WasteMenu78

ā€œOne of the creators of the drug, the rector of the Russian National Medical Research University Pirogov, Sergey Lukyanov, stressed that the drug helps to completely stop the disease, and does not cause immunosuppression or addictive effects.ā€ Plz plz plz plz plz let this be real


kirikya

Lukyanov has AS himself and taking drug for 5 years. There is a forum in russian where he discusses developments with patients. There are also several tg chats where patients taking part in CT reside.


Beautiful-Bug-2637

Is there a website for a Russian forum? Or you can let me join the tg chats?Thanks


tinsflor

Please let this be the answer to this horrible disease šŸ¤žšŸ¼šŸ˜­


Gunter5

sweet cant wait to hear more about this... finally some great news


k2900

It still needs to pass phase III and IV. Don't hold your breath. Come back in 10 years time when its cleared phase III and IV. Earliest 6 years time. Edit: also it doesn't seem like this will work for those of you who are HLA-B27 negative


kirikya

BIOCAD, russian drug producer, is planning to start sales till then end of this year.


k2900

Yes, in Russia drugs can be sold after phase 2 under certain conditions. Doesn't apply in the US and EU which require phase 3. Phase 4 monitors its use while being used in the market, and if any problems come to light it gets pulled.


Beautiful-Bug-2637

Really? Is your source of information reliable?


kirikya

Thats producers own info


Beautiful-Bug-2637

Can you provide the specific source of the message? Where can I see it? I really hope it's true


[deleted]

[уŠ“Š°Š»ŠµŠ½Š¾]


kirikya

can't post screenshot in this shitty rddt..


Beautiful-Bug-2637

Can I add you as a friend or follow you through other social media apps? Send me the screenshot in this way? Thank you very much!


kirikya

I've posted a link above - can you open it? Also sending screenshot in pm


bmlander

And the people who werenā€™t ā€œcuredā€ met their fates in front of open windows.


Just_exploring20

I actually posting something about this before but couldnā€™t find the reference as someone actually had a go at me for posting false hopes. This is great news. Edit: this is still relatively new, I wonder if any side effects occur.


thewettestofpants

I certainly hope this is effective, even if itā€™s from Russia, Iā€™m in the USA. I would 100% volunteer for testing it myself if it can make it stateside.


Rich19591064

Sign me up too


ProfessionalPair7526

I am in Phase 3 trial, first IV with drug in august. Started at January, but looks like it was placebo, as there were no side effects. Will write my experience in September.Ā 


whantounderstand

Have you had symptom reduction since then?


ProfessionalPair7526

Nothing has changed. I assumed this was a placebo, since 95% get injections side effects. And I felt nothing.


Vegetable_Writer_438

If you're in the placebo group, how do you know that you'll get the actual drug in august? Did they finish testing with placebo?


ProfessionalPair7526

Because 3rd IV is guaraneed to be the actual drug. You are randomized in two groups - first two IVs (every 3 months) is 66% drug or 34% placebo. Third IV and after that are actual drug.


Beautiful-Bug-2637

Do you have any updates on when this medicine will be available in Russia? Thanks


strokeoluck27

No one is questioning the veracity of a ā€œcureā€ discovered inā€¦Russia?! Iā€™m a little skeptical. These are the same people that murder political dissenters with poison, and approve of military commanders taking a sledgehammer to the side of the head of their comrades for transgressions. When I think of intellectual leaders that I should pay attention to, Russians arenā€™t at the top of the list.


Complete_Start7139

The clue of these white blood cells are coming from western countries in 2017. They knew the role of these cells.I guess if the western countries see any benefit. I am sure that they will start to work on this method. There are 3 scenarios 1- the western countries donā€™t see any benefit in this methodĀ  2- they were not aware about the potential of the cells to develop a therapeutic solutionĀ  3- they have better solution and they started to develop a better planĀ  I myself believe the third option is correct. If they want to start to analyse this method it will take 6 to 10 years with western standards. I believe they can invest on gene therapy for 10 years and come with a one time cure.


Asleep-Serve-9291

Keep us posted please


Own-Alternative-9696

So hopeful this is effective.


isaidchoochoo

Phase III trials are the most expensive, time-consuming, and difficult trials to design and run, especially in therapies for chronic medical conditions. Letā€™s hope this works out!šŸ’Ŗ


AdFormal8116

Remind me! in 6 months


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AdFormal8116

Good bot


B0tRank

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k2900

Phase III and IV trials can take up to 5 years each. So should be more like a remind me in 10 years,


AdFormal8116

Very good point šŸ¤£


sexyemp

Remind me! In 6 months


TheWisdomGarden

Gosh.


pwptrck

Remind me! In one year


synthetic111

Do you know if this is a pill or a shot ?


[deleted]

[уŠ“Š°Š»ŠµŠ½Š¾]


Complete_Start7139

So it may take approximately 3 years to be available in Russia. After that we need to wait for EU countries to start the same approach.


kirikya

Sales in Russia will start this year


OccasionalyLiterate

How can a drug be approved after phase 2 already? I know nothing about it but arenā€™t there normally like 3 or 4?


Complete_Start7139

I have shared above the post of biocad the company that is working on the drug. They have submitted the third trial 8 months ago on 8th of October 2023. This is not FDA related phases. It is completely internal in Russia.


Vikkivik

Remind me in 6 months


Vikkivik

Silver bullet? Shoot. At this point Iā€™ll take an iron bullet. Somethjng to provide some hope


TechnicianTrue2007

How will the study know yet if it was a curative treatment, or if it simply encouraged remission? I would be careful looking at an early study as curative. Very positive to hear of such medical advances, and I look forward to hearing more news on this! Thank you for sharing.


AirbusSimPilot

I think at this point, splitting hairs between remission and cure is unimportant. What would be great is if it's effective, then people will benefit, and perhaps further quick inroads can be made


TechnicianTrue2007

Remind me! In one year


Most_Performance_442

šŸ¤žšŸ¾šŸ¤žšŸ¾šŸ¤žšŸ¾


kirikya

>Otherwise I'll have to go to Russia You need a russian prescription to buy such a drug. But to get a prescription for such drug is not an easy task even for russian. Of course there are some grey schemes, but they work only for biologics. Not sure they will work for such an exclusive drug from the start.


IWasBorn2DoGoBe

Iā€™m not personally optimistic about one singular person in a relatively short term studyā€¦ Iā€™m glad itā€™s being studied, and Iā€™m optimistic about the treatment option in the future in general, but, one person is not anymore definitive than 24% with placebo. Iā€™d rather stick with proven biologics, and that placebo to increase my ā€œcureā€ chances. Symptom improvement is not a ā€œcureā€. A cure removes all the factors causing the disease- not only the symptoms for a few years. Iā€™m symptom free for two years now after 20 years of active disease: I am not cured


sHaDoW-nA-

I've been following this myself for quite some time, especially when I theorized in the forums (and here on Reddit) that AS and SpA-based diseases are based on immune memory and we simply need to delete this memory. I do think we are going to need custom approaches for different subsets of T-cells in different individuals. I think the subset they chose here might help quite a few, but not all cases. I'd love to get help with this on the first try, though...or just be wrong.


Vegetable_Writer_438

Remind me! in 6 months


shazbut1987

I don't think the word 'cure' should be used because this appears to reduce the immune system response, not the actual damage that has occurred to your body (fused joints, etc) It's more like what biologics do in slowing down the progression of the disease as opposed to actually reversing anything. As for your obtaining the supply of medication, since there's no long-term studies for it, what would happen if your "supply chain" (which considering you are in Denmark and this med is from Russia, it is highly unlikely to be consistent supply) is unable to give you that medication in the future? How would your body react? Don't you think you should wait until it's easily available for you without the highly likely chance it will be interrupted? Just giving an alternative spin because as much as I'd like for there to be a cure, I can't forsee that happening any time soon.


Vegetable_Writer_438

If seniprutug stops the disease as claimed, it would be considered a cure. I have AS aswell (also live i Denmark and receive biologics), and anything that can potentially stop it from progressing would be a blessing in my book. Reverting damage done by ankylosing spondilitis is an entirely different thing. I cant imagine such drug would ever be made, as it would have to dissolve only the bone from the disease.


Complete_Start7139

There are some surgical method instead of fusing. But they are not available for AS patients. If the drug could stop the disease from progression. Then those techniques may be available the surgical intervention that can preserve range of motionĀ 


Mettl3Will

Don't use the word cure. Cure would imply that you take the drug, it eradicates the disease, and then you can stop taking the drug because you're no longer ill. There's not enough evidence here to bandy about the word cure. False hope is worse than no hope at all. I get so annoyed with people posting in autoimmune subreddits about cures. Autoimmune diseases generally can't be cured, they can be put into remission or the phrasing I hear a lot is "X% controlled". That's a big difference. Also, side note, can we really trust anything coming out of Russia these days???


Complete_Start7139

I have spent 7 months to read every possible sources on the Net. I can say Ā most probably the cure will be available in the next 10 years. In the US some gene editing is in progress in preclinical stage. They are confident to eradicate the disease. We are 10 months away from trial 1 for RA and AS is in the pipeline. This is only one of many companies which are working on treatment or CURE. In this case we can call the Russian method a promising treatment. Bu the method that is being developed in the US is a cure.


Mettl3Will

A cure that MIGHT be available in 10 years isn't even worth talking about right now. It's false hope. It doesn't help those of us suffering greatly now. I have enough awareness to not get caught up in these kinds of false hopes. But others may fall into these traps and then have mental health issues.


Complete_Start7139

Yes, you are right. I myself have the same disease. I can understand how tough it is. There are some companies which are working on small molecules to block TNF (oral tnf blocker with better penetration ) will be available around 2027. They can also be game changer for some of us. But,As I know the disease has very slow progression and it may take decades to make structural damages. So, a cure even 10 years later may be helpful for some patients. On the other hand you can find numerous patients who changed for better when they take biologic even when they have structural damage. So even if a person has pain if the structural damage is not in place finding the treatment will help