Thinking about changing rheumatologist

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New Member

Date Joined Jul 2007
Total Posts : 13
   Posted 6/6/2008 9:39 PM (GMT -6)   
I've been seeing my doc since being diagnosed.  I have been extremely happy with her.  In fact, it was through her insistence that I stuck with the Remicade.  After six infusions, I'm satisfied with the treatment plan.  My problem is that I just can't afford the medicine.  Even with insurance, my copays are extraordinary.  My current doctor knows my situation. 
For the last week, I've been calling the doctor office and have left three messages with the nurses.  I'm in a lot of pain because I'm overdue for the infusion.  To add insult to injury, I need them to complete forms for my job's disability insurance carrier, so I can continue to receive disability. 
Am I overreacting?  They have always been responsive to my phone calls in the past, but I feel my rheumy may be holding back b/c I haven't been in for the infusion.  I would be happy to receive it, but I don't have the $500 because they have not completed the forms...
Has anyone ever had to switch doctors?  I may just be allowing the pain to think for me, so I'd really appreciate a level head intervention! 
BTW, I'm relatively newly diagnosed, so all this is new to me.  I fully plan on returning to some sort of work, but I'm doubtful it will be my former career.  I'm in the Atlanta area, so if someone can recommend a good rheumatologist, I'd appreciate it.

New Member

Date Joined Jul 2007
Total Posts : 13
   Posted 6/6/2008 9:52 PM (GMT -6)   
Also, if I may add how wonderful it is to be able to share and read other experiences on this board. I'm sitting here in self-pity mode because I'm hurting, and just knowing that others can empathize with getting a handle on this little disease is a great coping tool.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 6/7/2008 2:52 PM (GMT -6)   
I would bring the forms you need to the office with as much of it already filled out as possible and wait for them to be filled out and handed back to me. (after calling to ask when it would be best to do so).
I would also call the makers of Remicade and ask them about discounts-unless the amount you are paying is going to the infusion center or doctor's office.
Perhaps call and make an appointment to see the doctor-tell the person making the appointment that you have some questions for the doctor and will need a little extra time so that they can schedual appropriately. Then sit down and tell the doctor (I know you have already discussed this) that it is no longer possible for you to pay for the Remicade and ask her to plan out a different course of treatment. Or, if her filling out the paperwork would actually make it affordable for you tell her that you would like to stay on the Remicade but would be unable to get your next infusion until you receive the completed paperwork and it is processed.
If after that meeting you don't get an adequate response then I would get another doctor. Sometimes even though we have mentioned these things to our doctors seperately they don't get the bigger picture unless we discuss it all at once and very directly. But if you have been other wise happy with your doctor I would give him one more chance-your next doctor may have graduated at the bottom of his class-it sometimes takes a lot to find a good one-so I would not leave a good one unless their seemed to be no alternative and all options had been exhausted.
Of cource that is only what I would do you have to decide what is best for you.
I hope this was helpful and I wish you good luck.

New Member

Date Joined Jul 2007
Total Posts : 13
   Posted 6/8/2008 10:29 PM (GMT -6)   
Extremely helpful!  Thank you.  I really hate leaving her, so I hope being direct will address my concerns. 

New Member

Date Joined Mar 2008
Total Posts : 3
   Posted 6/10/2008 10:23 AM (GMT -6)   


I was reading you posting about your infusions for the Remicade. I was diagnosed with severe aggressive RA about three weeks after my double spine fusion last November 7, 2007.  I did my research and I am still doing research on the internet. If you are on company leave disability you probably would be entiled to a foundation or organization non profit grant. 

To do this you need to contact the Healthwell Foundation at 800-675-8416 and the Provider Services, Inc. Organization at 800-366-7741 or 877-250-2350. You can also contact the Patient Access Network Organization at 866-316-7261. 

Although you probably are not on Medicare or Medicaid you can have your medical forms signed by your Rheumatologist to assist you in receiving the Remicade infusion.

I am fortunate to have one of the above foundations sponsor me until the end of December 2008 for Embrel. I was supposed to go on Remicade, Humira or Orencia but I have severe COPD and chronic infections with Bronchitis/Asthma. Right now I have been off the Embrel going on 3 weeks and I have another 3 weeks to be on a different antibiotic to help clear the lung infection.  After that I am hoping that my immune system will not be so low that I catch any kind of bacteria or viral infections.

I can not be on Embrel the same time I am on antibiotics. I suffer horribly from left and right joint knee pain and my feet and toes. My hands are not to bad yet. I will be going back on Embrel in about three weeks, that's if I am good and use my albuterol nebuilzer 4 times a day for my lungs. After 3 months again of taking the Embrel if that does not work then I will be going on probably Orencia.

I certainly do feel for people who have RA and a high RF factor with all the joint and swelling of the body tissue it's just horrible. I use a very strong cream on my knees 3 times a day it's called Voltaren and I take Tramadol for pain when I am very badly hurting.

Right now I am getting ready to probably very soon be in an electronic wheel chair. I have a very hard time walking and my left knee is in horrible shape probably will need a new knee soon. But I try to stay very positive. There is not one day that I am pain free. So besides having severe RA, I also have COPD and I never smoked a day in my life. I also have a disease of the eye tissue and I take Restatis for my eyes every day and I see a neuro opthalmalogist. I would say stay with your RA doctor just be persistent with the office.  Because most of the time the doctors don't even get the messages that you want to relay to them.

Stay positive and try to do the things you enjoy.  Regards, Rebz nono

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