Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Concerned about my rheumy ...

I paid a visit to my rheumatologist today for the first time in about seven months. I updated him on all of my aches and pains, fatigue, brain fog and all that good stuff. After I finished, He looked me dead in the eye and said, "you're too young to be having all of these problems."

I'm 42.

Now, regardless of whether he was being sympathetic or accusatory, his reply shocked me because anyone who has spent more than five minutes Googling AS would know that it's is usually diagnosed prior to the age of 45, which makes me a "typical" AS sufferer. I'm beginning to wonder how much he really knows about this disease.

Another thing that concerns me is his insistence on prescribing Remicade. I've reached the point where I'm ready to give the anti-TNFs a shot - no pun intended - but he's never once even mentioned Enbrel or Humira, only Remicade. He even seemed a bit aggravated that I hadn't started treatment yet, right before he proceeds to tell me there's a 30 to 50 percent chance it won't even help me. Further, they've got an entire room of their facility set up just for infusions - fancy chairs and all (maybe this is common - I don't know). I've explained to him that, even with the RemiStart program, I'm concerned about my ability to afford these treatments as I still have to miss work and pay for the office time each visit and I'm on an EXTREMELY tight budget as it is. All of this just makes me suspicious that there may be some sort of financial incentive for him to prescribe Remicade over other TNF inhibitors.

What do you think? Am I overanalyzing all of this or do you see some red flags, too?

This would be a red flag for me. I am actually going to change doctors as well. My doctor does not seem to have a good grasp on AS and especially not diet. Meds are his only answer. And that is not good enough for me.

Many of us have heard that statement often... sometimes out of sympathy. Was his statement out of disbelief or in sympathy? I have had rheumies say that to me out of sympathy and went about trying to help me.

Tim

I started Anti-TNF on Infleximab, which meant six weekly infusions. I got fed up having to loose at day at work and asked to switch to Humira, which they were fine about. It's annoying enough to have to come into hospital so often for various appointments but every six weeks was too much, I wanted something I could inject myself.

I felt the benefit within 48 hours by the way.

Some doctors and nurses have terrible bed side manner, my biologic nurse patronises me with basic advice on nutrition, without even asking me if I understand what good diet and nutrition is. I've had AS for 24 years so I have learned quite a lot it's very annoying when medical staff assume you know nothing and they need to feed you basic advice all the time. Last time I went I told her I had stopped taking Humira, to see if I could manage it naturally. She aggressively gave advice saying what if I had a flare up, basically tried to talk me out of it. Then told me to do some stretches, these were things I learned in the first 7 years of my condition, I have been on an expert patient programme for 2 weeks and learned all the physio stuff. I could probably teach her a thing or to!

Maybe he thought you are too young to be suffering in this way, and that's what he meant but was ham fisted about it. It is important to get a doctor who you trust and has a good bed side manner though, I would switch. Then again I assume you are in America and I'm in the UK so we have different health systems. I could take a day off work and be covered by employment law, I wouldn't have to pay it back. It does mean you get behind when you are in busy periods so its added stress.

My rheumatologist is quite bossy but she is kind too and would go that extra mile for me, she always says I'm in fantastic shape for the severity of my arthritis.

I have to wonder if it was sympathy, as my rheumies also used to make comments like that in the early days before my disease was controlled.

I wouldn't get onto the conspiracy theory band wagon too quickly. Your rheumy may simply believe that Remicade is the best option for you. And should you decide to start it, believe me you will be grateful for the fancy chairs. Remicade was my first biologic. The chairs I used to sit in were quite uncomfortable after one hour, let alone after the amount of time it took to get my dose. I'm now on Enbrel as after 4.5 years, Remicade stopped being as effective as it had been. Enbrel is all right, but doesn't hit the sweet spots Remicade did.

Let him know your concerns re lost wages while in for Remicade treatment and see if he will consider Enbrel or Humira. It's worth a shot. Pun intended.

Warm hugs,

Thanks, as always, for the kind words and thoughtful advice. I'm going to talk with my PCP next month to get his input, then I'll make a decision. Take care, everyone!

I have heard those very words when I was much older than you are.
I think you have a kind, caring dr.

Best wishes.

Yeah, I think it was just a misunderstanding, perhaps. A good thing to do when you feel uncomfortable with what someone says is to feel comfortable asking them what they mean, or asking them to clarify. Specialists and surgeons have a reputation for not always having a good bed side manner. If I don't like a doc, Id find one who's personality meshes with mine.

I understand about your financial concerns. I've quit going to doctors for financial reasons. The cost and missing work can be a very hard burden to bare.

I don't see red flags at all.

Doctors tend to have different opinions about which drug to start with based on their clinical experience with their patients. If you are ready to start an anti-TNF but wish to try Enbrel or Humira instead of Remicade, ask your doctor about that. There may be a medical reason why he wants you to try Remicade first that we are unaware of. Doctors in the US do not get a kickback from drug companies for prescribing one drug over another. They also do not make enough on insurance reimbursement for infusion therapy to consider it a big moneymaker or even a profit center. Doctors who offer infusions in their offices do so for their patients' comfort and convenience.

His comment about you being "too young" for your level of symptoms may have been a sympathetic comment that you took the wrong way. It may also have been intended to encourage you to start more aggressive therapy. If you are having significant symptoms and are only taking an NSAID and pain medication, you are not doing enough to control your disease. If he has recommended anti-TNFs before and you come in after not seeing him for 7 months and give him a laundry list of symptoms, it is logical that he is going to be frustrated that you have not been more proactive sooner. His goal is and should be to help you get your disease under control quickly and effectively.

I wish you the best in getting your disease under control.

I know sometimes my doctors get frustrated when they can't help me more. They like to see their patients feel better / get better and it can be as frustrating to them as it is to us when we struggle despite all that is being done for us. I'd take that comment as sympathy / empathy if I were you, but of course I didn't hear his tone of voice...that to me speaks volumes.

as for the remicade, if you would prefer starting with humira or enbrel, tell him the reasons why. once he hears your thoughts and you hear his, hopefully the two of you can come up with a plan together. sometimes it depends on the insurance; my aunt was supposed to start humira around the same time i started my humira, but her insurance made her do remicade instead. I had great success with humira; she had much less success with remicade...but we're all different...what works for one, may or may not work for another. but you know what....there is only one way to know...and that's to try it....if it doesn't work, nothing lost, and there are other biologics to try....but if it works, well, your life will change in ways that are hard for you to imagine at the moment.