What if the meds just don't work!

General
1

In my medical records there is a sentence that both frustrates and baffles some medical professionals that I have come in contact with over the years while trying to treat my PsA.

This is the sentence: (insert therapy/treatment/medication name here) ... had no effect on this patient.

What does that mean?

It means physical therapy, light therapy, water therapy, and ice therapy did nothing. They did not make me better or worse they just had no affect, however heat therapy did, it reduced pain and so we have ruled out a bunch of things that did no good and now stick with something we know helps. This part of the explanation goes well everyone can agree that if these did not work it was okay to stop wasting my time and energy on them and stick to the things that do.

The same can not be said however for medications that have had the same problem.

I have a very long list of medications that I had been on for the maximum amount of time that should have produced a positive result, but instead they did nothing. They did not make anything any worse but they also did not make anything any better. I have tried many of them more than once and in various combinations with other medications and some of them tried and retried over the course of 12 years and always the same result ... none.

So why is it that some medical professionaIs I have come into contact with can't accept the fact that the meds simply do not work? The concept that a medication commonly used to treat this disease simply does not do anything for me no matter how long I am on it or what it is combined with has lead to some very frustrating discussions. When I give the list of medications I have been on along with explanations of what has worked, how it helped, how it did not help, what side effects I had while on it and so on I never expected anyone to be upset with me that a medication simply had no affect. Normally after they read my file and we go down all the points of what does, doesnt work thats where it stops and the doctor/nurse/therapist moves onto other options or things we could try.

My rheumy went on vacation and in the time he was gone I had a bad flare and decided to drag myself in to see his replacement. The smiling doctor who greeted me pleasantly as I indroduced myself was not smiling after about 5 minutes of looking over my chart. He was in fact glaring at the thing as if it had called him a dirty word.

He then looked at me and said why didn't this med work for you or this one or this one? They should have worked. Did you miss a dose or stop taking it for any reason? My answer was no I took it exactly as I was directed and I don't know why it did not work.

To be honest I never though to ask why a medication did not work I relied on my doctor to see that over time a medication was or was not working and then if needed to try something else. I thought that was all part and parcel to almost any medication for any kind of illness. Yet here I was feeling I needed to defend myself and I had no idea why or even how to do so. The only proof I could offer was nothing there was no good result to show or bad result to show there was simply nothing well except frustration. I actually felt bad that the medications did not work.

I have done everything my specialists have suggested and it seems that they are just as disappointed as I am when there is no result but never before did anyone make me feel like it was my fault a medication did not work, usually they actually say lets try this medication or therapy and we wait and see becase there is no guaranteee that it will work only there have been some cases where it has worked.

I have not been in a good place the last few months have been an emotional roller coaster and I really did not need the temp filling in for my rheumy to add feeling guilty that my medications were not miracle cures to the list of things weighing on my mind...

I left actually feeling guilty that the medications had not worked and like maybe if I had done something different it would have. When my rheumy gets back I am going to talk this over with him because I do not ever want to feel the way I did yesterday again.

So discussion time:

Why do some medications work for some people and others don't?

How would you explain that a medication did not work for you?

And if you were asked why a medication did not work for you how would you respond?

2

Why do some medications work for some people and others don't?

Because not all chemicals react the same in all humans.

How would you explain that a medication did not work for you?

My usual physician and I didn't see any improvement in my condition after taking the medication for a length of time that should show improvement.

And if you were asked why a medication did not work for you how would you respond?

I don't know. I didn't go to medical school so I don't know why something didn't work for me. I'm assuming that it's because not all medications work on all people but hey you're the trained professional not me.

If a medication worked the same for ever single patient it would make treatment so much easier. Unfortunately it just doesn't work that way. I think the replacement doctor was a little stupid to question you. He saw your chart and trying to blame the patient rude and inconsiderate. We aren't responsible for our disease. It's not like we did something to cause the psoriasis or the complications from it.

3

you could be like me…one of the 10% of those with PsA who will not respond to any medication. There is no clear explanation for this, but that no two human are exactly the same…and what might work for you may not work for me.

I personally can not believe a doctor asked you those questions and made you feel bad. Shame on them!

4

"So discussion time:

Why do some medications work for some people and others don't?

How would you explain that a medication did not work for you?

And if you were asked why a medication did not work for you how would you respond?"

Why do some people get auto-immune diseases, while most people don't?

Why do some people have massive heart attacks, while others smoke all of their 95 years of life?

Thankfully there's a LOT of different medications and more are coming out in the next few years. If you don't yet have something that works, try something else. Your doctor can ask those questions but no given med works for everyone. I wish there was a magic bullet for PsA, but there isn't. There are lots of silver bullets though, hopefully you and your doc can find one that works.

5

I have a list of medications and treatments therapies and things that do and do not work that could fill a book. I have been on every medication that is available in Germany at least for arthritis over the course of the last 11 years both before and after my diagnosis, it took many years to get my official diagnosis due to the fact that while I had bone changes and flares and all kinds of arthritis issues I did not have any skin problems until 2 years ago, but back to the point.

My doctors know me and my case well but I ended up with a temporary replacement who I had never met who decided that if the medications did not work it must be something the patient did. The reason I posed the questions here on how would you respond to someone who asked was because my experience with the new doctor threw me for a loop. I hope I never come across another doctor like him but we are moving soon which means I will be dealing with I lot of new doctors, nurses, hospital staff and so on and I never again want to feel the way I did with the temp. I want to be able to go to new doctors without feeling insecure or on guard. If i ever see that temp again he will get to see my snarky empowered side. I am not a doctor or a genetics/DNA expert so I know I will not be able to explain to anyone why the meds I have been on do not work all I know is that they didn't. I know how long I was on them and how I felt and how the diseased has progressed whether I was on any medications or not. I could explain to him that I was on MTX for 2 years with no positive results both in combination with sulfasalazine and prednisolon a year later a comboniation of MTX, Humira, sulfasalazine and predinosolon and then a year after that the same combo but instead of Humira I was on Enbrel. I think though instead if I ever see him again I would instead of explaining any of that I would just put him in his place for being condescending and remind him that a medicines failure to give positive results is not the doctors or the patients failure.

Going down the list of medications and feeling like a guinea pig and a bit hopeless at times was not easy but looking back on the list of things that did not work I now see the positive side. The meds that did not work are in a sense an accomplishment they have been tried and I can now advance onto other types. In Germany you have to have been on so many of each type of med to be able to advance to the next level so in essence everything that didnt work is one less thing holding me back from maybe finding the one that does.

The idea behind answers to the questions I posed in the first post was more of a how would you react to someone talking down to you for not having an answer to them. I am normally a bossy loud outspoken person when it comes to care for my children or my husband I can advocate and push to make sure they are getting all of the help they need. When it comes to care for myself I tend to be more likely to go along with whatever the doctors/nurses/hospital suggest mostly because I hate to be a burden to people. I am the one used to caring for everyone. It is very hard for me to let others take care of me in the first place so when that temp decided to talk down to me it really got to me. I actually left the office without the Mtx shot I would usually have gotten just because I was to insecure to remind him. I am angry with myself for not having stood up for me had that been one of my family members I would have surely put him in his place. I also want to have some good answers to those snarky questions just in case I ever come across anyone like him again.

Thank you all for the relpies and support and for in general just being awesome <3

6

I have had a doctor who took it as a *personal affront* when a medication did not work for me and acted in an accusing manner. I had to change doctors, because it made me feel horrible. I am one who either has a dramatic effect from a medication, or....nothing. Just like you. I've had a lot of really powerful meds just do zero. It really does make some dr.'s freak out. I'm sorry you have to deal with this.

7

I was wondering if I had been the only one this has happened too it really upset me. So many times I have felt insecure since I got sick it has not been an easy road for me. I tried to make myself ignore pain that years ago doctors could find no reason to have. I tried to convince myself for years that it was all in my head and that I was just more sensitive to pain than other people, I kept pushing myself long after I was certain there was something wrong because no one found anything. Once I got my diagnosis it was empowering I felt a strength in knowing what I was fighting against and was ready to tackle the world. That is until the other day when the temp for my doctor really made me so uncomfortable that I almost felt guilty the medications did not work. I want then to work I want my life back to the way it was before, but I know those things are not possible. Now I just want to fight this with all I can and to never ever let myself feel so imtimidated again that I let myself feel guilty for trying to get the care I need to be able to keep taking care of my family.

Marietta I am glad you changed doctors and I hope one day you and the rest of us here find treatments that make our lives better and medical staff who do not give up on us but also encourage us to never give up. I am thankful for my family without them I know I would be lost, and for my friends who are always there to pick me up when I am down.

Most of all I am thankful for the fellow PsA patients who have taken the time and shared their experiences, struggles, wisdom, laughs, tears, and so much more with me because I know all to well that the time they take out to help me comes at a price to them, my hope is to be able to be as much help to others.

Marietta said:

I have had a doctor who took it as a *personal affront* when a medication did not work for me and acted in an accusing manner. I had to change doctors, because it made me feel horrible. I am one who either has a dramatic effect from a medication, or....nothing. Just like you. I've had a lot of really powerful meds just do zero. It really does make some dr.'s freak out. I'm sorry you have to deal with this.

8

If I'd have been in your shoes there would have been a blue streak in the air and an abundance of curse words. My passive aggressive side would have taken over and it would not have been pretty. I'm sure you were rattled because OF COURSE you want the meds to work and OF COURSE you have zero control over whether or not they do. Perhaps this doctor was not particularly clever in disguising his disbelief that the things that should work just don't. But that doesn't excuse his lack of empathy and his grilling you.

Talk to your regular rheumatologist. Ask HIM (in as accusatory tone as you can muster) why none of these drugs have worked for you. Hang in there.

9

I know how you feel. We do not need to be treated this way when we already have so much to cope with which makes me feel fragile and vunerable at times. I have been angry and frustrated with my treatment for PsA and Plaque P.

I have had a similar experience, where I had a Dermatologist accused me of not using the ointment he prescribed and said he had treated thousands of patients and it worked on them and then said if you were admitted to hospital and a nurse put the ointment on you it would work. I was diligent in following his instructions. I have since learnt how ineffective most of those creams are on P skin. Recently I was sent for Physio appt by a Registrar only to find out during my appointment that it would not help me. My day was wasted and it cost me $50 and the travel there and back knocked me around. It is a shame we can't get our money back if we are not satisfied with the medical profession.

One of the problems I see is the trials for medications only need a low percentage of patients for a new meds to work and for them to put it on the market. I cant remember the exact figure but I think it was about 4 out of every10. So what about the other 6 it does not work for. Yet doctors seem to assume it should work for everyone. Odds like this, it is very obvious why it doesn't work on everyone.

The next part is do the big pharma companies actually want to find cures or do they prefer to only want to provide on going treatments that are lucrative to them with continuing repeat Rx.

10


One of the problems I see is the trials for medications only need a low percentage of patients for a new meds to work and for them to put it on the market. I cant remember the exact figure but I think it was about 4 out of every10. So what about the other 6 it does not work for. Yet doctors seem to assume it should work for everyone. Odds like this, it is very obvious why it doesn't work on everyone.

The next part is do the big pharma companies actually want to find cures or do they prefer to only want to provide on going treatments that are lucrative to them with continuing repeat Rx

I actually had a rheumy ask me to explain why a treatment worked for me! After seeing the improvement in Bloods he became annoyed that I did not want to go onto MTX and wanted to continue with the Antibiotic Treatment. It was like he assumed bloods turned around by themselves.

I do believe that whilst there are genuine people out there trying to find a cure, the cure wont be found from the big pharma and the way the research funding goes it isn't conducive to finding a non patented low profit treatment.