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

[manasi12]

@kushami ..can you tell the doctor that you generally feel better on steroids, and that's why you would like to try some immunosuppresant ?

 

[kushami]

@kushami ..can you tell the doctor that you generally feel better on steroids, and that's why you would like to try some immunosuppresant ?

Yes, I did manage to get access to a couple of medications that way, but he would only try me on the lowest-level ones.

It is a good strategy but then I came up against "You're not sick enough to try an immunosuppressant" (as in something slightly stronger and slightly more risky).

 

[I am sick]

@kushami ..can you tell the doctor that you generally feel better on steroids, and that's why you would like to try some immunosuppresant ?

Sure I would.
Here most Dr's know the insurance game ! You have to start on the cheapest stuff first then move up !
I have been on 5 different immunosuppresant and had about all the side effects they list! But none have helped ! Once on one and it doesnt help , you have to wait at least one month to try another .
It is a very long process to find one that works for you.
I start on my sixth this week once I see the urologist and find out when my next surgery is.
No body wants you on one for surgeries.
Good Luck

 

[I am sick]

Sure I would.
Here most Dr's know the insurance game ! You have to start on the cheapest stuff first then move up !
I have been on 5 different immunosuppresant and had about all the side effects they list! But none have helped ! Once on one and it doesnt help , you have to wait at least one month to try another .
It is a very long process to find one that works for you.
I start on my sixth this week once I see the urologist and find out when my next surgery is.
No body wants you on one for surgeries.
Good Luck

And a word of advice before you start on a biologic have you kidney function tested and your liver tested and then have both retested in two months.
One biologic almost caused kidney failure and one almost caused liver failure.
I luckily had both test done prior due to blood work for my current issue and a recheck of the same blood work three months latter and that showed my kidney function had dropped to almost nothing.
So prior to the next biologics i requested blood work to be done prior new biologics , the forth biologic showed reduced liver function .
I reccomend testing at two months instead of three , because it gives you a better chance to have a quicker recovery!

 

[kushami]

I forgot to add that in Australia, a doctor can refuse to have you as a patient any more. It can only be done under certain circumstances, such as the patient doing something illegal that interferes with their care, refusing to follow any of the doctor's advice, or being aggressive or unpleasant.

I am pretty sure that taking prescription medications without a prescription would be considered such a reason.

I can understand that they might feel it compromised the doctor–patient relationship, or that they couldn't give me proper care because of these extra medications that aren't being overseen by a specialist.

At the same time, I want to get better, and I seem to be on the right path. So unless I meet a very intelligent and empathic doctor, I'll be keeping it to myself.

(P.S. If I get very sick or go into hospital in an emergency, I will be honest, of course. Any my support person has the real list of my medications for such an eventuality.)