GI doc's role

After my remicade treatment on the 15th I had about 7 days of awful knee pain, and some pain in my shoulder. The infusion was on a Weds and I waited until Monday the 20th to call my GI. He was out of the office. I told the nurse I was having bad joint pain, and I was noticing a rash on my face after the shower and if I exerted myself. She said that sounded like a reaction to the remicade, and to try benedryl. She said the doc would be back in the office on Weds and I should check in with my GP.

Unfortunately there was a screw with the GP and I won't get in until the 29th. The GI nurse called me back on Weds to tell me the GI doc wants to proceed with the next infusion, but see me a week afterwards.

I feel like my GI doc is pawning my remicade induced side effects to my GP. Is this normal that the GI isn't more involved? I feel like at least he should tell me to see a specialist. When I saw him earlier in the month and expressed concern over fatigue, he told me to have my GP check it out.

Am I just being cranky because I feel crappy? Until this last visit with my GI, I've felt like he really listened and has had my best interests at heart. I've never liked the office staff, and have tons of issues with their billing department, but have put up with all that because I trusted and liked my GI.

What are the guidelines for what your GI doc should handle?

Sarah

Hmm, sounds like you did have a reaction to the remicade. Did they pre-medicate you with Solumedrol (steroids) and Benedryl prior to the infusion? Typically if you have a reaction, your GI should advice you on how best to proceed. That's what my husband's GI does.

If you were not pre-treated with solumedrol and benedryl to control a reaction from the remicade, call your doctor's office back, and ask them about that.

Also, pretty much my husband has to take tylenol for 2 days after the infusion to handle fever and joint pain after the infusion (even after being pre-medicated with steroids and benedryl).

The normal protocol that my hubby's GI has used is to first try the remicade with just benedryl and ask the patient to take tylenol for any flu like symptoms. If the patient says they had a lot of joint pain, etc, the next step is to give both benedryl and solumedrol at the next infusion prior to infusing the remicade, and see if this helps. Other GIs try the tack of doing low dose steroids the week preceding the infusion to try to dampen down the immune response. If this too does not help, remicade may not be the choice of drug for you, and it maybe time to try Humira or Cimzia.

Hope this helps. You should call your GI, and maybe make an appt to see him prior to the next infusion. My hubby's GI's nurse went on maternity leave once, and man did we miss her. Normally when we leave a message for her, she calls back, takes our symptoms, talks to the GI and gets back to us. When she was on maternity leave, the substitute nurse was all about protecting the GI's time, not about caring for the patient. It was absolutely terrible. So, it could just be the nurse who isn't getting your message across to the GI. When I feel my hubby's concerns are not being addressed, I make an appt to see the doc ASAP, and go get my co-pay's worth of consulting.

PV

Thanks!! I need to shake off my irritation and see if I can't get in before my next infusion. I'd rather hide under the covers, but I don't think that will help! Hopefully my GI was just having an off-day the last time I saw him, and I won't have to deal with the b*tch of a nurse ever again. I've got to figure out how to communicate how I feel, and how high the pain level is so that I won't feel like I'm being blown off.

I have just been pre-medicated with benedryl and tylenol before my infusion, no steriods. Tylenol does nothing for the pain. I'm dreading the 3rd infusion, but maybe if they add some steriods in the mix it won't be so bad.

Sarah

The office staff may not be communicating your message accurately to the GI and may not be communicating the GI's message back very well either.

I agree that your symptoms are concerning and that proceeding with the next infusion without at least a phone conversation with the GI seems unwise.

I agree with MNavy that the GI is rxing therefor the GI is responsible.

However, many busy GI's rely on GP's to do a certain amount of screening of problems that may or may not be related to the reason you are being seen by GI.

I would not necessarily think it wrong for them to send me to the GP when the GI can't see you and it's a rash and joint pain. This could be a viral illness.

If the GI can't see you then seeing the GP when the symptoms are present is better than not being seen at all. The GP can give his/her impressions to the GI and there will be info in your records about it. Also the GP can intervene if he/she feels there is a life-threatening or dangerous situation developing and the GI knows and counts on this.

But seeing the GP should not be a substitute for routine GI care/appts. Only a back up plan when something may not be Crohn's-related or when the situation is urgent and the GI is simply not available.

As for communication with the GI -

You could try calling the GI's office and telling them you want to speak to the doctor personally and to please have him call you at his earliest convenience. If they say the nurse will call you back be firm and tell them that you will not speak to the nurse, only the doctor.

If you get no reply in a couple days, you can call and tell them you refuse to do the next infusion until you have spoken with the doctor because you are concerned that you might have a severe reaction.

You may also want to FAX them this information and your request to speak to the doctor so there is a written record that you had a reason for refusing to do the infusion and asking for a consult.

Next to last resort - go sit in the waiting room and refuse to leave until the doctor sees you. This generally works. The doc may not be happy about it but if your message wasn't getting through to him it won't be you he's unhappy with. The office staff will definitely not be happy about it but what are they going to do? Throw you out?

Last resort - call after hours when you know he will be on call and ask him to call you about your reaction to the infusion. Let him know you are very sorry to bother him outside office hours about this but it is really bothering you and you feel frustrated trying to communicate with the office staff about your symptoms.

I do not recommend using the last resort if it can possibly be avoided.

As you may gather I have had some negative experiences with office personnel at doctor's offices.

Rem is a specialised medication; gps (as my own gastro doc says) don't have many patients on such drugs, and don't have much experience or knowledge in dealing with them. Rem reactions are a job for your gastro doc, imo. And if he doesn't listen, and you're worried, I suggest taking yourself to the gp and complaining, ringing the Rem help line, if there is one, or going to the emergency dept if your symptoms progress and become more concerning.

Cranky on your behalf,

Ivy.