Where can I buy DMTs without prescription, at my own risk?

As a newcomer it seems to me that we have a sub-optimal method of treating MS.

DMTs are not prescribed until certainly of diagnosis, and diagnosis is not made until lesions are seen. However there are many stories of people being diagnosed years after symptoms started. Are lesions actually evidence of damage that are only visible well after MS has been active?

And yet research is showing that early use of DMTs can materially change the long-term development curve of MS.

I have VEP P100 latencies 117 and 113, massive fatigue, some bowel leakage, etc, and a sibling with RRMS. But my MRIs 5-6 months ago had no visible lesions - so no diagnosis.

Where can I buy some DMTs without prescription? The risk/reward for me of going on DMTs now seems very positive; possible big long-term benefits in lower MS development if I do have MS, and yet side effect risks are very limited. I can always come off DMTs later if I find I don’t have MS.

Thanks for any thoughts.

Best wishes

Hi, I can understand your urge to get DMDs, but I really would advise against getting them without your neuro’s consent or knowledge.

There is a wide array of DMDs and how would you know which one would suit you? There are potential side effects, so this is a concern.

Boudsx

many thanks Bouds.

I think your doctor (hopefully!) consults the same public information that we all can.

I’d go for ocrelizumab - reported very low side effects, and NICE guidance here.

p.s. This is not new stuff; 2018;
" The time of treatment is critically important in limiting the progression of the multifaceted pathways of this disease."

Also

Yes there will always be some sort of risk of unexpected side effects but this is a risk/reward balance decision.
Engineers, military, politicians, investors, business people and many others have to take such decisions all the time.
We need the doctors to consider us not as we appear now, but as we may be in 20-30 years time.

You’ll struggle to get it without prescription. I previously had a drug addiction and bought all sorts of prescription-only drugs online, and never came across anything of the sort, even on the dark web.

It’s also difficult because of the situation it needs to be given with, I.e. a slow infusion under close medical supervision, because some people do find their body flips out when presented with the drug and immediate medical attention is needed. So expect to also want to hire a private medical professional to supervise, or somehow get a private hospital to let you undergo it there. If you’re doing it at home, because it needs to be a slow and steady infusion, you’d need to buy one of those electronic infusion machines too, so that it could control the pace at which it was injected over 3-6 hours. And of course there is the price for the ocre itself (even the NHS pays around £19,000 for a single yearly course, and you’d expect a much, much higher price if you were buying it black market, without the bulk purchasing and negotiating power of a body like the NHS behind you) but I assume you’ve taken that into consideration. It also needs special infusion equipment. It’s only IV but it has to be routed through an ocre filter before it goes into you, which I assume comes through the same manufacturer, but I’ve had a nurse mess mine up and throw it away and get another one, so I don’t think it just comes as a standard package with the medication. I also haven’t seen the ocre come as just a vial or whatever, whenever I’ve had the infusion it comes mixed into an IV bag with a carrier, and the mixing is done on-site by a pharmacist, so you’d need to get all that stuff too, it’s not just a straight injection. You’re also given a rinse of something IV before and after, but I don’t know what it is or why it’s done, to be honest. And of course you’d need the pre-meds, but they’re far easier to get OTC, or black market.

A lot of non-abusable meds can be bought online, but there are various things that limit which ones can be obtained, and for ocre, there are a couple of biggies. The main one is that it’s not available off-brand, it’s only made by one company in the world, nobody else produces it. This means that to get hold of it, the only way to do it is via that one company, and they’re not just handing it out to anyone with the money; they’d potentially be in huge trouble if they did, they’d be risking their entire company. This makes it much, much harder to obtain. Additionally, because it’s exclusively given in a hospital setting, and because it’s so expensive, all the doses out there are being tracked, nobody is selling their ocre like they might their insulin or diazepam script, because nobody ever takes it out of a hospital.

If you really wanted to get it outside of the NHS, your best best would be to hop outside of the U.K. There are various countries where you can pay for medications without the stringent oversight of U.K. bodies, such as India. However, because you’re talking about doing something illicit, you’re taking the risk that they’re just going to give you water, or worse yet, something directly harmful, and of course you’ll have no recourse if that happens, because you shouldn’t have been doing it to begin with. Also, if someone is willing to bend rules to give you the Ocre, you can’t have much trust that they’re not bending other rules too, such as the safety precautions that prevent you from getting HIV. If something goes wrong, your safety will not be their priority. Same goes for buying drugs online; never think that the person selling it to you cares whether you get better or even whether you survive, they just care about making profit and not getting caught. Think about all of the people who died taking drugs laced with fentanyl; the dealers weren’t thinking about the well-being of their customers. Be very clear in your mind, even if it’s not a medication to get high, once you’re buying something on the black market, you’re buying it from a drug dealer. Ocre is a prescription-only medication, so if you’re getting it from anywhere other than a doctor who has prescribed it to you, you’re buying it on the black market. Even if they dress it up real pretty, don’t be fooled: you’re dealing with criminals. Take it from someone who lived in that world for a time, and know you’ll need to be incredibly proactive about protecting yourself, and even being as careful as it’s possible to be, there are no gaurentees of safety. Honestly, the most likely outcome is that you’ll just get robbed, but worse is very possible.

Assuming you can find it, you’ll need to do it all over again every 6 months, indefinitely. If your supplier gets busted or it becomes otherwise unavailable… well, you’re back to square one.

I will also say, I’ve not had any super nasty side-effects from the ocre, but there is some stuff, like it makes you much more susceptible to upper respiratory infections and then you’re significantly less able to fight them off, so you really wouldn’t want to get COVID. This is more of an issue if you’re travelling by plane back from your infusion in India or similar. There are also some things that make it unsafe to take, like you’d want to obtain private blood tests to check you don’t carry any of the herpes or hep viruses before you started, and then you need regular blood monitoring of your immune system once you’re on it. I assume you can buy these privately, but I’m actually due for my routine blood monitoring appt on Wednesday this week, and am having to go into a major city hospital to get it done. When I called and asked if my local hospital could do it instead, because travel is an issue for me, I was told no, because it requires specialist lab facilities that my local hospital doesn’t have. As such, I’m thinking you’d need a fairly robust private hospital to do the monitoring, rather than your standard private testing company. I’ve also had a recurring skin infection in my back tbat nobody can explain but seems to be down to the Ocre. It just randomly appears on my back and starts eating through the skin really quickly, and it’s left quite severe scarring. Oh, and a random swab of my face I had done with a beauty skin company found that my face was colonised with an opportunistic bacteria only found in the immunocompromised, which is similar to MRSA in that it’s antibiotic resistant, and it can cause infections of the heart and bladder, and pneumonia. My consultant isn’t aware of anyone else who has had a skin culture like that done, since it was outside of the NHS and was supposed to just be a fun, beauty-related thing, but because Ocre is fairly new too, nobody could really tell me what it means or what I should do about it. So it’s worth remembering, as you say, you have access to most of the same stuff doctors do, and it’s not actually all that much, this is too new a medication to know a huge amount about how it affects us, especially long-term. While it’s high-efficacy for people with relapsing MS, it’s actually not all that effective for progressive MS, it’s just the best thing we have, because we have almost nothing else. So if you’ve not yet been diagnosed, and you don’t know what type you have, it’s potentially all of this faff for a very moderate slowing of symptom development.

thank you very much Rainbow, this is very valuable.

It’s important to remember that using controlled substances without a prescription or in violation of the law can lead to serious legal, health, and safety consequences. If you are experiencing mental health issues or seeking alternative treatments, it’s important to speak with a licensed healthcare professional who can provide safe and legal options for treatment.