Have you ever told a doctor that you were taking something off your own bat, and, if so, what was the reaction?

[kushami]

I am wondering how I will convince a doctor to prescribe me something that I know works because I've had it "illegally" by ordering it myself from overseas.

I'm guessing being honest about it would probably go badly, but thought I'd pick your brains!

 

[Rufous McKinney]

I'm from California. Isn't everything that works, a substance that is illegal?

What type of substance is it? (maybe that matters). Does it have high risks for side effects? (maybe you would appear irresponsible to have consumed it willy nilly or without doctor oversight). Is it illegal everywhere? (apparently not, you obtained it somehow).

Isn't it human nature to try something if you've investigated it and believe it really should help you?

Did you have a doctor 'before" and that is how you tried it?

Could you have gone on a vacation recently and "tried it"?

Is this a doctor you know?

 

[heapsreal]

I probably tried more things that I haven't told them by a mile then i have told them

 

[bad1080]

do you trust your doctor? if yes, then be honest, if not why are you going to them?

 

[Viala]

I don't even tell them what supplements I take. Chances are high that they will say that they are causing the problems. But then I very rarely consult them now.

You could say that your relative uses that medicine and it works well, so you also want to try it. It depends on a doctor, some are ok with trying new things.

 

[cfs since 1998]

They don't need to know how you got it, and usually don't ask. The kinds of drugs we take do not usually raise that kind of suspicion. "I've been taking X" is usually not followed by "how did you get X" unless it is some kind of controlled substance.

 

[Treeman]

I did once tell a GP that I had tried lisdexamfetamine at a low dose which had been giving to me by a friend who had it prescribed and had some spare after forgetting to take it.

I asked them to prescribe it to me as I had read it helps fatigue from some research which I shared with them. I knew they wouldn’t prescribe it as I’m in the UK and there is no chance unless it has gone through extensive trails for fatigue, which it hasn’t.

I only wanted 5mg and it has been accepted for other conditions up to 40mg I think. They advised me not to take any medications not prescribed for me and apologised that they couldn’t help me?

One GP did suggest I’m tested for ADHD as it can be a co condition and I thought they were indirectly advising me to play the system, but the benefits were not that great and I didn’t think I should have to do that.

Good luck.

 

[linusbert]

I am wondering how I will convince a doctor to prescribe me something that I know works because I've had it "illegally" by ordering it myself from overseas.

why not just tell him that you used the substance in the past and it worked. no need to lie , no need to tell more. if he asks how you did get it, say you do not want to talk about this.

 

[Zebra]

Hi, @kushami

As some one else asked, how is your relationship with this particular doctor?

I can think of ONE of my own doctors who would quickly get over her shock/judgement and listen to my positive experience with the drug and think deeply about how/why it might be helping me.

The rest of my medical team would re-act pretty badly. I don't think they would be able to compartmentalize their initial reactions in order to keep listening, really listening, you know?

 

[kushami]

why not just tell him that you used the substance in the past and it worked. no need to lie , no need to tell more. if he asks how you did get it, say you do not want to talk about this.

Hmm, that's a possibility.

 

[kushami]

Good questions!

I don't have any particular doctor in mind. I just see one of a string of GPs at the local clinic. So far the current one hasn't been too awful, but we don't have any kind of relationship.

I have asked her a couple of pointed questions recently and her response was disappointing, so I don't hold out any great hope of her becoming a good resource.

The medication in question (methotrexate, autoimmune dosage) is available only by prescription in Australia, and I have obtained it from All Day Chemist without a prescription. This is illegal (although you wouldn't go to jail for it).

Taking another person's prescription medication in Australia is illegal, so the doctor would be concerned if you said you had done that (but again they aren't going to tell the police unless it was a restricted substance being sold to you).

Have taken other suggestions on board for thought.

 

[kushami]

do you trust your doctor? if yes, then be honest, if not why are you going to them?

In terms of my GP (primary care doctor), I just go to her to get prescription repeats for medications that I already know work for me and for basic health matters, like annual screenings or getting a wart removed.

I don't feel I can rely on her in a meaningful way for anything beyond that.

I did spend a lot of time searching for someone more conscientious and reliable after my old GP retired, but didn't have any luck, so now I just go to the second-closest clinic to my house.

(The closest clinic has the receptionist from hell.)

 

[kushami]

By the way, the reason I started taking methotrexate is that I have something autoimmune causing low blood flow to the brain (or at least that's what the researcher in the US who studies OCHOS says).

I did see a rheumatologist who was okay. Not awful, but not brilliant either. He tried me on LDN (worked but gave me awful nightmares) and hydroxychloroquine (got rid of pain in my hands and wrists but didn't do anything for the cerebral blood flow).

Usually methotrexate would be the next-step DMARD for someone who didn't respond to hydroxychloroquine, but the rheumatologist said I wasn't sick enough to to have it. (On other fronts, he said I could have it, i.e. there's nothing wrong with my liver that would be a contraindication.)

My researcher, Dr Novak is giving a talk soon at the Dysautonomia International conference about using IVIg on his patients, possibly including his OCHOS patients. I would never qualify for IVIg here, but I might be able to use his lecture to convince them to step me up one level on the DMARD front.


DMARD stands for disease-modifying anti-rheumatic drug. There are about ten of these (varies a bit according to which autoimmune disease is being treated) and they are roughly arranged from weakest/least risky to strongest/most risky. If those don't work, then come more fancy (expensive) ones such as biologics, JAK inhibitors, and possibly IVIg.

 

[SpinachHands]

By the way, the reason I started taking methotrexate is that I have something autoimmune causing low blood flow to the brain (or at least that's what the researcher in the US who studies OCHOS says).

I did see a rheumatologist who was okay. Not awful, but not brilliant either. He tried me on LDN (worked but gave me awful nightmares) and hydroxychloroquine (got rid of pain in my hands and wrists but didn't do anything for the cerebral blood flow).

Usually methotrexate would be the next-step DMARD for someone who didn't respond to hydroxychloroquine, but the rheumatologist said I wasn't sick enough to to have it. (On other fronts, he said I could have it, i.e. there's nothing wrong with my liver that would be a contraindication.)

My researcher, Dr Novak is giving a talk soon at the Dysautonomia International conference about using IVIg on his patients, possibly including his OCHOS patients. I would never qualify for IVIg here, but I might be able to use his lecture to convince them to step me up one level on the DMARD front.


DMARD stands for disease-modifying anti-rheumatic drug. There are about ten of these (varies a bit according to which autoimmune disease is being treated) and they are roughly arranged from weakest/least risky to strongest/most risky. If those don't work, then come more fancy (expensive) ones such as biologics, JAK inhibitors, and possibly IVIg.

I think it might be Dr Novak's talk that's encouraged my partner's doctor here in the UK to try and arrange for IVIG! You said he's your researcher- are you under him for clinical trials?
What country are you in by the way?
In terms of your original question, I think you might get away with saying you tried it from a private prescription, unless your GP is very diligent and communicative with other specialists you see.

 

[kushami]

@SpinachHands, sadly I am not under Dr Novak's care. I live in Australia and he doesn't do international consultations (unless you visit in person).

I call him "my researcher", being a bit silly, because his work has been so important to me. He described my condition, OCHOS, and recommended treatment for it in a textbook he wrote, so I have been able to take advantage of those publications to get (some) treatment here.

Did you watch his talk about the IVIg study? He has a rather thick accent still despite living in the US for a long time, so I didn't catch everything, and also it was 3am here, but I imagine the paper will be published soon. It's great that doctors around the world are watching and taking an interest in his work.

 

[kushami]

Oh, and that is a good idea about saying it was a private specialist, but my GP would then want to communicate with them and would wonder who had referred me.

On a tangent:
In Australia, if you are happy to waive your government subsidy, you can see a specialist without a referral, but weirdly nobody seems to know this except me and the person who put it on the health department website. So technically you could see any specialist you like without a referral if you had the money, and you would not have to have a GP at all.

I had an experience recently where it took me six months and seven GP appointments to get a referral to a specialist for something pretty straightforward, and at that point I was wishing I could spend some of my retirement fund going direct!

 

[SpinachHands]

@SpinachHands, sadly I am not under Dr Novak's care. I live in Australia and he doesn't do international consultations (unless you visit in person).

I call him "my researcher", being a bit silly, because his work has been so important to me. He described my condition, OCHOS, and recommended treatment for it in a textbook he wrote, so I have been able to take advantage of those publications to get (some) treatment here.

Did you watch his talk about the IVIg study? He has a rather thick accent still despite living in the US for a long time, so I didn't catch everything, and also it was 3am here, but I imagine the paper will be published soon. It's great that doctors around the world are watching and taking an interest in his work.

Ah I see what you mean, I feel like that definitely counts as him being your researcher

I would definitely be interested in watching it if a recording is posted anywhere!

 

[SpinachHands]

Oh, and that is a good idea about saying it was a private specialist, but my GP would then want to communicate with them and would wonder who had referred me.

On a tangent:
In Australia, if you are happy to waive your government subsidy, you can see a specialist without a referral, but weirdly nobody seems to know this except me and the person who put it on the health department website. So technically you could see any specialist you like without a referral if you had the money, and you would not have to have a GP at all.

I had an experience recently where it took me six months and seven GP appointments to get a referral to a specialist for something pretty straightforward, and at that point I was wishing I could spend some of my retirement fund going direct!

That sounds annoying, especially if you don't have a helpful GP. In the UK it's a mixed bag, some private doctors require a referral, some don't. Thankfully my partner's GP is always happy to write a referral, it's usually just getting the private doctors to return my emails that's the most time consuming No subsidies though, so all private appointments are full out of pocket for us. I have heard sometimes if a private doctor also works at the NHS, they might transfer a private patient to being one of their NHS patients. So the meds and scans will be free, and you skipped the initial wait list, but any follow-up appointments you're on their NHS wait list (which for most specialties is around a year)