Self-medicating question

[Pamela H in Texas]

There is a miracle drug out. Supposedly, it has no side effects unless you raise the level to a certain point (a point most people never need to raise it to anyway) and even then there is ONE side effect and it is QUITE mild and only for SOME people. Anyway, it's just not an issue.

 

Background:

 

You are VERY sick. You've been to EVERY doctor and specialist. They all admit that there is SOMETHING wrong, but they don't know what the big picture dx is. They each treat you for their piece and send you on your way. You are in EXTREME amounts of pain, haven't been able to work most of your adult life, have pushed way too much responsibility onto your family, and are just SICK and TIRED of this. In your worst days, weeks, months, you beg to die in your sleep (and yes, you've considered suicide on a number of occasions, but you try not to dwell there and have gotten help when you couldn't keep yourself from dwelling there).

 

Question:

 

Would you try this miracle drug if you could legally obtain it?

 

Would you tell the next doctor you're going to? (I have this answer in my head, but...).

 

ETA: This is not a new drug. I don't want to share too much information though some of you may know what it is because of being desperate like me or being in another situation where you'd be (or know someone) prescribed this medication. I've been researching it over a year (off and on, of course).

Edited July 2, 2010 by 2J5M9K

[NanceXToo]

Without actually BEING in the situation where I HAVE to decide, so it's easy for me to say, take this for what it's worth, but:

 

Yes.

 

ETA: And yes, I'd tell my doctor. It might need to affect his decision making process in regard to how he treats me while I'm taking that drug, or he may need to know what side effects to look for and relate to that drug, etc. I'd consider that part of covering my own bases.

Edited July 2, 2010 by NanceXToo

[3lilreds in NC]

I voted "yes," and that I'd tell my doctor, which is funny, because I try not to go to the doctor and generally don't trust them.

 

However, if it is something relatively safe, supposedly without side effects, I would do it - especially if nothing else had worked. I would only tell my doctor so that they would know with regard to other medications I might be taking, or that they might want to prescribe.

 

:grouphug: I'm sorry you're ill, Pam.

[JudoMom]

There is a miracle drug out. Supposedly, it has no side effects unless you raise the level to a certain point (a point most people never need to raise it to anyway) and even then there is ONE side effect and it is QUITE mild and only for SOME people. Anyway, it's just not an issue.

 

Background:

 

You are VERY sick. You've been to EVERY doctor and specialist. They all admit that there is SOMETHING wrong, but they don't know what the big picture dx is. They each treat you for their piece and send you on your way. You are in EXTREME amounts of pain, haven't been able to work most of your adult life, have pushed way too much responsibility onto your family, and are just SICK and TIRED of this. In your worst days, weeks, months, you beg to die in your sleep (and yes, you've considered suicide on a number of occasions, but you try not to dwell there and have gotten help when you couldn't keep yourself from dwelling there).

 

Question:

 

Would you try this miracle drug if you could legally obtain it?

 

Would you tell the next doctor you're going to? (I have this answer in my head, but...).

 

ETA: This is not a new drug. I don't want to share too much information though some of you may know what it is because of being desperate like me or being in another situation where you'd be (or know someone) prescribed this medication. I've been researching it over a year (off and on, of course).

 

If it is a prescription medication, I would talk to my doctor. If it truly is a miracle drug, and I though it would help, I would find a doctor that was on the same page as me to prescribe it so they could monitor me.

 

If it is not a prescription medication, but an herb that I could buy in the store, I would try it and tell my doctor about it so they could monitor me.

 

If it was medical marijuana, I wouldn't try it for various reasons, but the main one is I don't like things that make me feel like I don't have complete control of myself, but if I did try it I would tell my doctor so they could monitor me.

 

I would want to have a doctor monitoring me, though. People in my family have reacted to "harmless" medication in ways that could have turned serious if it wasn't caught through bloodwork.

 

I guess I'll go vote other.

[Pamela H in Texas]

Clarification:

 

It *is* a prescription drug. My own doctor wouldn't even consider it because this use (and dose) is off-label. I haven't found a doctor here but will by Aug 1st (when my ins kicks in). When I put in this drug name and my area, I didn't find anyone, but I only tried for a short time and will try again this weekend when I have more time. It is *not* marijuana.

 

The question is more about doing it on your own because a doc won't do it at this point.

 

I would be scared to tell a doc; but because it ideally will alter the level of medication I need otherwise, I think I would HAVE to tell him/her. I need close monitoring of that. Also, what *IF* I was in an accident or had some major medical situation and they gave me something that wasn't compatible for some reason? I just can't imagine NOT disclosing medication one is taking. But telling scares me. Docs generally don't like you deciding to do things your own way. But I don't think docs understand the situation either (the doc my friend found who would prescribe the medication actually has a dx for an autoimmune disorder so has a clue. Sadly, she quit practicing about a month after I found out about her).

Edited July 2, 2010 by 2J5M9K

[JudoMom]

Clarification:

 

It *is* a prescription drug. My own doctor wouldn't even consider it because this use (and dose) is off-label. I haven't found a doctor here but will by Aug 1st (when my ins kicks in). When I put in this drug name and my area, I didn't find anyone, but I only tried for a short time and will try again this weekend when I have more time. It is *not* marijuana.

 

The question is more about doing it on your own because a doc won't do it at this point.

 

I would be scared to tell a doc; but because it ideally will alter the level of medication I need otherwise, I think I would HAVE to tell him/her. I need close monitoring of that. Also, what *IF* I was in an accident or had some major medical situation and they gave me something that wasn't compatible for some reason? I just can't imagine NOT disclosing medication one is taking. But telling scares me. Docs generally don't like you deciding to do things your own way. But I don't think docs understand the situation either (the doc my friend found who would prescribe the medication actually has a dx for an autoimmune disorder so has a clue. Sadly, she quit practicing about a month after I found out about her).

 

I do think you would have to tell the doctor.

 

My dh, who was on medication for arthritis (safe meds), had it raise his cholesterol (despite assurances by the doctor that this med didn't do that) and affect his kidney function (a rare side effect).

 

My ds8, who was also on medication for arthritis, had it lower the neutrophils in his blood to a dangerously low level. His rheumatologist, who has prescribed this drug for 30 years, had never seen the effect and still isn't convinced it was the med, but ds' hematologist thinks it's a plausible explanation since nothing else (except for the fact ds runs on the low end of normal for neutrophils naturally) turned up after extensive testing.

 

I do hope you're able to find a good doctor that will listen to you. We've been so blessed with a good pediatrician, a good pediatric hematologist, and now after trying to find one for years, good general practitioner for myself and my husband. A good doctor is worth their weight in gold (our luck with rheumatologists/pediatric rheumatologists hasn't been as good).

[Tress]

I voted 'yes' and I would tell my doctor for the reasons other posters gave above.

 

But I have to say, reading your background and hearing you are in so much pain, I would probably try ANYTHING even illegal medication/drugs, *unless* it could harm others.

[AspieMel]

Most definitely, I would jump at ANY chance to feel better. And if it's prescription, I would go to a doc that is an MD versed in holistic meds, as they would be MUCH more open to prescribing it for me.. other wise, I'd find SOME way to get it and just tell the doc after I've started it.

 

I don't hold much faith in the medical community anymore.. *hug*

[angela in ohio]

I don't understand how you could legally obtain it if you don't get a doctor's prescription?

 

I voted no. I change my answer, based on the further info posted, as long as it is being prescribed by a doctor who will monitor you during its use.

[Wheres Toto]

If you know the manufacturer of the medication and they have a patient information line, they may be able to give you the name of a doctor that will prescribe it for the off-label use. Many prescriptions have off-label uses and the manufacturer will often track this usage to eventually submit for a second indication.

[Julie in CA]

(the doc my friend found who would prescribe the medication actually has a dx for an autoimmune disorder so has a clue. Sadly, she quit practicing about a month after I found out about her).

So who does your friend see now? Is it possible to get a referral from the doc who quit practicing? She might know of another doc who is inclined to think the same way she does.

 

ETA: Don't some insurance companies balk at covering treatment that includes off-label uses of Rx? I think I'd check into that too, so you don't run into any surprises as far as $$ is concerned.

[Whereneverever]

If you know the manufacturer of the medication and they have a patient information line, they may be able to give you the name of a doctor that will prescribe it for the off-label use. Many prescriptions have off-label uses and the manufacturer will often track this usage to eventually submit for a second indication.

:iagree:

[hornblower]

bottom line is you're going to have to get a scrip from someone.

 

if one of the options is buying online without a scrip, then NO WAY. Do not do this.

 

And I DO buy online from reputable pharmacies which require the prescription.

 

If it's avail OTC in another country - that's different, esp if it's a European country with strict safety protocols for instance. Then I'd have someone buy it for me & send it over.

 

And I'd never, never, never keep info like this from a physician. The dr needs to know what you're taking.

[Parrothead]

I said yes, and I wouldn't tell my doctor. But I have to say that if and when I found a doctor that would perscribe this medication, I'd stick with him/her and ditch the doctor that would not help. And I actually have done the several times.

[MBM]

If it's a new drug, sometimes all of the side effects aren't fully known, so be careful if you do decide to take it.

 

Also, you'd want to be sure any other meds or non-meds like grapefruit wouldn't make it more potent and possibly unsafe.

[krisperry]

Yes, absolutely and without a doubt. Chronic debilitating pain suffocates joy - it keeps people in dark places. Any drug that can alleviate the agony should be utilized. No one should have to suffer so needlessly. *heart*

[Pamela H in Texas]

Thanks y'all.

 

I'm going to spend some time this weekend looking for a doctor SOMEWHERE who will prescribe this medication for this reason. The medication isn't new and the typical dosage is MANY times higher than I would be taking (taken at the normal dosage, there are some side effects). I just would feel better if I got a local doc to prescribe it and obtained it "normally."

 

But I think I *will* go ahead and try it regardless. And if I have to do it myself, let my new doctor know what I am doing so I can be monitored appropriately.

 

I understand the concerns. Hopefully I can just do it the typical way of such things so I don't have any worries about it. I really want strict monitoring so I can not have any problems with the doses of my other meds.

[Heidi7Sue]

I said yes I would take it and yes I would tell my Dr. I'd want to tell the doctor for all the reasons other people said. And I thought of another concern - if you're getting it from someplace less than perfectly reputable, it's possible it would be a different substance than advertised.

 

In any case, I hope you find a solution that works.

:grouphug:

[Nakia]

I don't understand how you could legally obtain it if you don't get a doctor's prescription?

 

 

 

I don't understand either. It seems the only legal way to get a prescription med is with a prescription.

 

But I did vote yes. I can't imagine the pain you have, but I can imagine the desperation to feel better. :grouphug:

[shannatheshedevil]

I don't understand either. It seems the only legal way to get a prescription med is with a prescription.

 

But I did vote yes. I can't imagine the pain you have, but I can imagine the desperation to feel better. :grouphug:

 

Order it online. It's pretty easy to get whatever you want

[Nakia]

Order it online. It's pretty easy to get whatever you want

 

Is that legal?

[kalanamak]

But I don't think docs understand the situation either (the doc my friend found who would prescribe the medication actually has a dx for an autoimmune disorder so has a clue. Sadly, she quit practicing about a month after I found out about her).

 

I was frustrated with, e.g. the barely chubby patients I declined to give Phen-Fen to who later came to me, weeping with terror, wondering if they had ruined their health, but I didn't kick them out of my practice. (One sobbed "I even bought it in an alley, ugh").

 

Some doctors might.

 

I would tell, regardless. For some reason I'm channeling thalidomide. I would tell that one, for sure!

[Liz CA]

I would absolutely try anything to improve my condition. I am of the opinion that one needs to take one's health decision in one's own hands and - within the law - be free to try supplements or medication even if a MD does not "like" it.

If you are talking about illegal drugs/medications, I would not do it. If it is a drug that is allowed in another country but not in U.S., I would try to travel there if I could afford it. All this, of course, after I had done extensive research and possibly had talked to others who had taken it.

 

I don't have a regular doctor really but I would not be afraid to tell them. Are you wondering about telling a doc because there is an issue about legality? If it's legal, I see no reason why I would not tell him. If he does not like it, it's his business, not mine.

[IsabelC]

Hard to know without being in the actual situation and having all the data. But I wouldn't go to a doctor and not tell her/him about any drugs I was taking. Good doctors have a hard enough job as it is, without having to deal with patients who don't disclose relevant health information.

[emubird]

I've done it. Back when ibuprofen was a prescription only drug, and was only off-label for menstrual cramps, I read about it in a book. It looked to be some kind of wonder drug, but every doctor I saw patted me on the head and told me they weren't going to prescribe such a strong drug for such a little lady. For menstrual cramps? Who was I kidding? They're not that bad (oh, yeah, tell me that after I wake up from passing out from the pain...)

 

Then the boyfriend I was breaking up with experienced a little bit of back pain from the stress of our break up (honestly, it was a LITTLE back pain -- he was an incredible wimp. If it had been anything much, he wouldn't have been out of bed.) And guess what?? One of those doctors who had told me ibuprofen was way more than I needed for my once a month, makes me pass out cramps, prescribed ibuprofen for my wimpy, might have a little back ache almost ex-boyfriend.

 

I stole it from him. If he ever noticed, I didn't hear about it.

 

It did work wonders. About a year later, I finally found a doctor who would prescribe it for me.

 

Unfortunately, since I had to get it as a prescription at the time, I was then unable to get health insurance for anything involving reproductive parts. For all I know, I'd still be rejected from non-group insurance based on those few trips to the doctor before ibuprofen began to be sold over the counter.

[Care]

I'm likely not saying anything new, but YES. Get/take the drug, particularly if it will improve your quality of life. If you go back to the useless doctors (I'd be inclined to not, and find someone new), tell them you're on this med. You don't have to tell them why or how or from whom you got it, just that you're taking it. I'd just be worried about interactions with current/future meds if you don't disclose it... though truthfully you'd be better off at that point just telling your pharmacist and letting them handle it. Of course, I have rotten experiences with doctors prescribing things that their patient actually cannot have.

[Lovedtodeath]

I would take it. I would tell my Natural Doctor because full disclosure is very important for testing.

[hornblower]

For some reason I'm channeling thalidomide. I would tell that one, for sure!

 

That was my guess too.

 

Pamela, I'm sorry you're in pain & not getting the help you need. Hope you find a physician who can help you heal & give you relief in the meantime.

[RanchGirl]

Yes I would take it for sure. Just do your research well. And once you start seeing a doctor, just tell him/her you are taking XYZ. As Care mentioned above, no need to explain how you acquired it, the new doctor most likely will not ask. Do mention it though since it will help paint the full picture on the off-chance you find a physician who actually wants to find a way to help you (forgive the sarcasm, I've struggled in this area myself!!).

 

ETA... I don't believe in miracle drugs, at least not often, but it sounds like it would be worth a try!

[Peela]

Yes, absolutely. But I self medicate all the time. I do lots of research and check it out thoroughly.

 

I dont know why you wouldn't tell your doctor? Or for that matter, why you would? The only reason I would tell a doctor is if it worked, and I wanted him to know that it worked. And/or if there was a chance of drug interactions.

 

The truth is, in many cases, you will know more than your doctor because you will be putting in the hours of research and most doctors cant/dont/wont put that much time into researching new medications, let alopne natural treatments.

I cant tell you the number of times I have been to the doctor just to get a 2nd opinion, and after waiting for a couple of hours and getting a 5-10 minute appointment, have walked out disappointed that I knew more than the doctor.

[Lovedtodeath]

Yes, absolutely. But I self medicate all the time. I do lots of research and check it out thoroughly.

 

The truth is, in many cases, you will know more than your doctor because you will be putting in the hours of research and most doctors cant/dont/wont put that much time into researching new medications, let alone natural treatments.

:iagree:love Peela!

[Pamela H in Texas]

ETA... I don't believe in miracle drugs, at least not often, but it sounds like it would be worth a try!

 

By "miracle drug," I meant "will likely give me significant relief," NOT that I will be "normal." I wish it were the latter, but...

 

But people have given up mobility devices, gained more energy, had less pain, could work, etc. They sometimes get upset because they still will have a "bad day." Well, usually, the bad day is still better than any good day they had before treatment. However, I would settle for much less as THAT sounds like more of an improvement than I can even imagine at this point....though there was a month or so last year that was the best of my adult life, so then I kinda hold onto the idea that maybe my body has it in it SOMEWHERE/SOMEHOW to be "okay."

 

I hate that this is an actual drug (manufactured by a drug company) not an herbal remedy, diet, etc. But such is life, right?

[Lovedtodeath]

I don't believe that herbs are really any better than drugs. Whole food supplements are the best, but they can't do it all.

[Mama Lynx]

Yes, and I would only tell my doctor if I really trusted him/her to not freak out. I would also have thoroughly researched the drug myself, and would find out for myself what the potential drug interactions are.

[forevergrace]

Hi Pamela,

If this drug works for you, will you consider passing on the info. I haven't read all the responses, but, yes I would take it. I suffer from spinal problems, and will not take the medications the doctors have suggested. Most of the them for pain relief, (which made me a walking zombie) and I rarely take nsaids. I am always in pain it just varies to what degree. The one thing I find that offers relief is exercise, biking, moderate running, and power walking, stretching (always have to stretch). Again, I'm not sure what the problem your facing is; but everything is just a little worse for me when I don't move. I'll be thinking of you, and sending you positive energy. I hope this works!!

Forevergrace;)

[MelanieM]

I voted other.

 

If I really believed that I found something that would help me I would gladly take it. I would most certainly tell anyone that I was consulting for health advice as it's relevant and it's in my own best interests to do so. And if I had a doctor that gave me a hard time over what *I* was choosing for my own health care after much research and weighing of options, I'd fire him.

 

The reason I picked other is because I would also look at alternative treatments, especially dietary, as a way to get to the root of the problem. Medications help with symptoms, but they are not cures. And if you medicate an issue without getting to the root, you drive the symptoms deeper and end up with new issues to medicate. I would likely seek out a homeopath and work on unraveling my issues that way before choosing a prescription drug. Or perhaps take the drug and then work with a homeopath, depending on how extreme things were and how much relief I felt I could get.

 

Wishing you much health and wellness. :hug:

[PollyOR]

:grouphug: Pamela, I'm sorry you are in pain. I've only needed prescription drugs a few times in my life (antibiotics, mild pain relief, etc.). When my dd began treatment for depression, I started down a path that I would have rather skipped. It is amazing the crazy side effects this kiddo has experienced due to medication that is supposed to help her.

 

Because of dd's experience, I'm a reluctant "tell the doctor" person.

[dragons in the flower bed]

I say absolutely yes do it.

 

Whether or not to tell the doctor depends more on the doctor than anything else, though. Do you trust her?