Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Keep the Doc or Drop the Doc

Just got back yesterday from my Rheumy appointment. I was hoping we were going to try something new seeing that my pains are increasing and popping up in new places. She has had me on Tramadol and an anti-inflam(cant think of the name right now) . Tramadol does almost nothing for the pain and i have seen no relief from the Anti-inflam.I came to the appointment fully prepared with notes and research on the next drug she wants to put me on(Methotrexate). I explained that i am very tired all the time now and i didn`t like the idea that one of the side affects is extreme fatigue. Also i gathered that it doesn`t seem to offer much relief to those taking it. The only real relief i get and its not much is from beer and i would also have to give that up to take this pill. She got a little mad and said that what i have gathered is not true and i should stop looking on the internet because of all the horror stories. She convinced me to try it because she said that until we give it a try my insurance company will not approve Humira. Then she proceeded to tell me what the side affects are and they were the same as to what i just explained to her. She got upset with me when i said it . Then i asked her if i could get on something stronger for the pain and she proceeded to tell me that she doesnt like to prescribe narcotics and put me on a patch(Lidoden). It makes my skin feel cold but does nothing for the deep pain. This has dragged out with her for 3 months now and i have had extreme pain for years already. I am wondering if this process is the "Norm" or should i be seeking a more compassionate doctor?

Reese

Reese, I fear this is an all too common story. Doctors seem to be afraid to prescribe pain meds that actually help and I think it's because they don't want to be sued if there are problems.

I don't like the way she seems to talk to you. You might want to look around for a new rheumy, as you don't seem comfortable with this one. Also, you might looking into a Pain Clinic in your area.

Hugs,

I am a big fan of changing Doc's if I just don't feel that our persoalities work out. Particualrly if the Doc is too resitant to my input. I like to be in control or an active participant in what choices ar emade for me.

I also am not a fan of MTX- Mehtotrexate, but if she is planning to just use that to get approval for you to get Humira and you want to try a biologic like Humira then maybe you stick with her for that purpose alone. Maybe you ar enot interested in Humira.

One thing is certain. All of us here respond differently to different med's so it is a lot of trial and error so any Doc is just playing th odds looking for the one that works for you. A doc who changes med's quickly and will not say no or use biologics as a last resort has some value even if there is no personality or compassion there.

Hopeuflly I've waffled sufficiently to be of no help at all but I'm good at waffling a bit.

Hi, Reese:

If dropping one doctor means finding another doctor, I would say NO despite an initial YES before reading Your post.

DROP ALL DOCTORS is my position, but then I could never pay enough for someone else to take better care of me than myself and I could not pay them enough to be more educated about AS, so all my doctors were dangerous to me and I have dropped them all in favor of treating myself.

HEALTH,
John

i guess only you can decide whether to drop this doc or keep at it with her, depending partially on how many you've already been through, if you think the next one would be a better match for you, etc.

for me, this is my 4th one, and the best of the bunch, though he sounds like yours. mine put me on a NSAID though i told him i'd already had intolerable side effects (gastritis and edema) to naproxen, and the three cox-2 inhibitors (vioxx, celebrex, bextra), but he insisted i take naproxen again (just with more prilosec) - that lasted all of about 2 weeks, but long enough to prove to him both that the NSAIDs did work (thus it is inflammatory arthritis) and I COULD NOT TAKE THE DRUG (EDEMA). so he surprised me a bit when he put me on another and then another, but i stayed on each one just a day or two, as soon as i had even a little bit of the unacceptable side effects that always get progressively worse. so you could try that, take the mtx for just a little while, long enough to show that it works or doesn't work for the AS and that you can't tolerate the side effects (that's something that should be the patients choice, no one can really tell how we feel); at least no doctor has ever tried to strong arm me into staying on a drug i can't tolerate. in this way, you might be able to get to trying the biologics sooner. even if it doesn't seem like she is willing to work with you, you could try working with her, just try the mtx for a really short period of time and tell her you can't handle the side effects if that turns out to be true, don't stay on the drug to the point of being miserable. just one approach that could be tried. and IMHO, 3 months is not really that long for things to drag out, just a little longer.....as for the norm? i've had such an array of doctors, don't know if there is a norm, 4 rheumies, this being the first willing to at least say he'll help me (we'll see, over a year later, we're still waiting for that one), and my first endocrinologist was so cautious he didn't want to help me at all, but the second endocrinologist, he's a keeper, wish my main problems were endocrinological, he's that great.....GP tells me "just a little bit of discomfort" (when i talk about pain, sorry, but i always want to demonstrate "discomfort" when he says that one and "a little bit of tendonitis" in reference to the wrist i couldn't use even to type for a year or two).....physiatrist is wonderful, very creative in the things she suggests to me, very motivated to have me as functional as possible...so what's normal regarding doctors? they're people just like the rest of us, no two alike, IMHO. good luck whatever you decide.....and yeh, i know how you feel with "this has been going on long enough"....i just feel like "help me already!".....as for pain meds, i'd be persistent on that one.....the doctors have really undertreated me in that area....all of them.....i just keep calling back, persistent that what they gave me just isn't cutting it.....but now i'm on LDN so most the traditional pain meds are out for me....i will admit, i probably stick it out with a doctor much longer than i should.....i've just been to so many....and even tried to find a new GP and i'm still trying but every time a friend, colleague, or even one of my specialists recommend someone, they aren't taking new patients....so take my suggestions with a grain of salt

I'd start looking for a new doctor (don't quit the one you've got until you find someone else). It takes time and effort, but it's worth it. Last year I got fed up with my primary care doc who didn't seem to take my illness or my rheumatologist seriously, and would sometimes roll her eyes when I mentioned some research I did on the internet. So I asked other docs and friends for recommendations, shopped around, and found a wonderful internist/primary care doc. (I really like my rheumy already).

I bring a list of questions to my appointments, and my doctors appreciate me being organized and focused, and are willing to answer all my questions, and discuss treatment options. The only person who knows your own health best is YOU, so doctors should respect that.

Good luck!

I'd find a doctor (maybe not even a rheumy initially) that is willing to WORK WITH ME, NOT DICTATE TO ME. Doctors need to have good listening skills, some compassion, and the ability to demonstrate to the patient why the method of treatment they are recommending is the way to go. Remember, even though people think that doctors and the greater medical industry are indispensable, I'd argue differently. They are just another service industry in my opinion, and if you don't keep a close eye on what they are doing to you, you can end up in a heap of more trouble.

Sue, your comment about your wrist being so sore you couldn't even type got me to thinking. I wonder if the problem is mainly that pain is so subjective. Perhaps if we all started talking to our doctors in terms of what we can no longer do because of the pain, rather than trying to quantify it on a scale of 1-10 (which, let's face it, is a loose measure at best), they might get the point more quickly.

Warm hugs,

that's an excellent point! it wasn't til i was finally out of work for several months that some of my doctors finally came around, apparently having to type one handed in a job that requires a lot of typing wasn't good enough for some. most of the doctors can relate to the question, "how would you like to lose your career due to a chronic illness." that seems to resonate quite well. still there was one doctor for whom that didn't even seem to matter....i'll be ending my relationship with her, i need someone who will fight for me a little harder than that.....

Sue, they probably didn't get the typing one handed thing because they all do the one finger hop on their keyboards!!!!

Warm hugs,