Rheumatology Update

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/18/2006 9:58 AM (GMT -7)   
I saw my rheumy this morning.  I swear I'm so glad that I prepare what I'm going to say prior to these appointments because, while I love my rheumatologist, his appointments are similar to a lot of doctors in the "Slam, bam, thank you, mam!"  Not to be too crude, here. 
 
He wants to up my enbrel to 50 mg twice/week instead of once/week.  The only problem is my current insurance will not pay for it twice a week.  So, I basically have three choices:  1) switch to an insurance company that will cover enbrel 2x/week; 2) switch to a new drug, most likely kineret @ daily injection; or 3) continue with enbrel as is and up my ultracet dose.  The most desirable option for me would be to find an insurance carrier that will cover enbrel 2x/week.  However, I think my job will only allow me to switch health insurance once/year in January.  I'll check into that.  If I switch to kineret, I have to start from ground zero yet again, and wait even longer for something to work.  I'm not ready to give up on enbrel quite yet.  I've tentatively decided on the third option, to simply up the painkiller I'm currently taking and suck it up until the enbrel does more.  I truly wish I could take advil or motrin, or any of the NSAIDS just to supplement everything, but I can't.
 
Erin, you had a question regarding my having a colonoscopy in another post.  I've had a couple of upper and lower endoscopies.  Upper endoscopy routinely shows severe reflux, which I've been medicated for for about 3.5 years now.  I had a lower endoscopy (colonoscopy) done for the first time last August.  It showed multiple aphthous ulcers througout my colon.  My GI doctor of that time would not diagnose IBD because the biopsies from the ulcers came back negative for crohn's.  I've since learned that ulcerative colitis often has negative biopsies, and that's one of the ways they differentiate between cd and uc.  Both IBDs are, of course, related to arthritis.  I found a new GI doctor at a world-renowned hospital who specializes in IBD.  She did another colonscopy on me in February.  My scope was 100% normal--after being medicated with sulfasalazine (last November) and humira (this past January).  I follow up with her in a couple of weeks, but clearly she cannot say yay or nay if my scope was normal.  Honestly, I haven't had any lower GI symptoms since I've taken the Humira.  AFter about my 3rd injection, the symptoms just completely disappeared.  Have you noticed that Erin?  In any case, IBD has not been ruled out, but it is inconclusive at this point.  I'll see what this lady says in a couple of weeks.
 
Thanks everyone for your prayers and encouragement,
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/18/2006 12:30 PM (GMT -7)   
If your doc says you need it, your insurance still won't pay for it twice a week? Sorry, but I am very naive about this stuff... And if you change insurance companies, will they cover you since this is a "pre-existing" condition?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/18/2006 12:59 PM (GMT -7)   
Elcamino, I started out on the stardard dose of another biologic, Remicade. When my GI and rheumy decided that the standard dose was not effectively treating my CD and AS, they first upped my dosage, then shortened the interval I receive it. Both times the insurance said "no." Each time the doctor faxed a letter telling of the medical necessity and the potential consequences of not adequately treating my diseases. Each time the insurance came back approving the change. Has your rheumy appealed to your current insurance company? --Ides
CD, Ankylosing Spondylitis, peripheral neuropathy
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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/18/2006 1:04 PM (GMT -7)   
hey elcamino,
welcome home from your appt.
hmmm?  wow, that would be really great to get the Enbrel twice weekly. 
now, an MD can fight insurance companies!!!!!!!!  many times though, itis just that they don't want to be bothered with paperwork & effort.
 
does the rheummy know about the ins. situation?
 
it may be worth a go.
 
also, for me...i get the Humira @ no cost.  i know some drug companies provide assistance to meet cost or help cover cost of meds.  i would give that a try too! calling Enliven and asking for billing or insurance, they'll lead you in the right direction.
 
what about adding another DMARD to the current dose of Enbrel?  like Imuran or something?  did he talk about that? or MTX?
 
i have a feeling things will work out to your advantage somehow.
 
take good care
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/18/2006 3:54 PM (GMT -7)   

Hey all.  My rheumy said he has appealed to my insurance company for other patients before.  Sometimes, he's appealed the same case more than once.  They have always come back with a resounding no.  I did find out, though, that I can switch insurance in october; I don't have to wait until January.  I'm looking into the different options right now.  I think I can hold out as long as October, although I'm sure there will days where I will eat my words!

As far as preexisting conditions, I've heard rumors that insurance doesn't screen for preexisting conditions (aside from cancer, or other terminal illnesses) if you are getting through your employer.  If you are getting it on your own, however, they will make it very difficult to qualify.  I'm not sure of the rationale behind this, but it's only a rumor anyway.  I won't know until I try to switch.  My only dx is RA, though.  My doctors have not officially labeled anything else (IBD, in particular).  RA, although an expensive illness, is usually not terminal.  I don't think it would be grounds for an insurance company to turn me down, would it?

In any case, I'm now on a quest to improve the quality of my life.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/18/2006 7:44 PM (GMT -7)   
glad that it was posted: "is usually not terminal". cannot forget the seriousness of the disease.

can you get better pain medication in while waiting? that would be wonderful. make the wait not as bad.

ya know you're right....RA is a darn expensive illness! LOL. dang! that just hit me! lol.

october is just a summer breeze away. in fact, geesh...last may, wow...now it a year already since i stopped work. time goes by so quick.

here's to you elcamino on your quest to improving life!!!!!! cheers!!!!!!!!!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 5/19/2006 4:26 AM (GMT -7)   
hi elcamino, ihope ur wait wont be long. i too just this month had our "insurance" rep day, where we pick our companies and policies. now i didnt come out and directly ask but inquired because of all the meds my options and copay, plus the huge amount i have to pay my employer on top of everything else. one thing for certain dont get me started on medical stuff here in the good ole USA.

i might go online and see about trial samples? that might bring u to august or september? i really dont want summer to pass us by as i hate the snow and cold and Lord knows i get tons of it! good luck and one thing i know is we r our best advocates so i know sometimes after years of defeat and trying.... we give in but i say go fight for yourself and your needs you r worth it!

encourage your doctor to appeal again and again. maybe call and ask why appeals arent met. he might be missing a "key" word the insurance company is looking for? forgive my energy but i am new at this fight and niave(sp) for certain but hey remember i am in denial! hahahahaha

lata yalinda

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/19/2006 5:20 AM (GMT -7)   

My rheumy has made it clear to me that he will NOT appeal the insurance company on my behalf.  He has done so for other patients with this particular insurance company and has never been successful.  He has fought my insurance company on other medication related issues, though, so it's not that he's usually not willing to go to bat for me.  Just with this particular issue--he feels it is a futile effort on his part.  He has upped my tramadol, and I'm grudgingly taking a bit more than usual.  I do not want a stronger pain med.  As an ex-smoker, I'm considered an ex-drug addict and the risk of addiction to the heavier pain killers is increased.  Last thing in the world I need right now is to end up like Rush Limbaugh!

He told me yesterday that my arthritis is progressing--perhaps my RF has gone up?--and that the tnf-inhibitors can make arthritis worse before it makes it better.  If I find the tramadol is not working effectively, I'll call him and ask for something else.

Elcamino 


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 5/19/2006 5:23 AM (GMT -7)   
So far, my experience with insurance companies is that they deny all claims, and magically approve them once you call.
Call, ask them why, ask to be sent the policy that applies to the decision, ask to speak to a supervisor ... basically harass them as much as possible.

Good luck ... Craig

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/19/2006 6:55 AM (GMT -7)   

Perhaps I will call.  Maybe their response to me will be different from their response to my rheumatologist.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/21/2006 1:48 PM (GMT -7)   
Hey Elcamino, did you call? It just seems so odd to me that if you are already on the meds for it, then what is the big deal? Not like you are taking it for "recreation" it's needed for your condition... Want me to call? I will! :) Hang in there, and let us know what happens!

Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 5/21/2006 1:54 PM (GMT -7)   

Hi Duck.  I called my insurance company on Friday.  They said they didn't have a problem with it.  But after I thought about it, I believe my rheumatologist said that it would be covered for psoriatic arthritis (what you have), but is not FDA approved for RA (@ 100 mg/week).  I will call Medco back tomorrow and clarify with them.  If they truly don't have a problem with prescribing that dosage for RA, then I will call my rheumatologist and ask if he would go ahead and try it (he has to write another letter justifying it).  I took my enbrel injection yesterday, and I felt horrible this morning, but this afternoon, I am truly feeling the benefit of it.  I think 100 mg/week would really help me for a while.  Otherwise, I guess I'll just have to suck it up and deal until the enbrel fully kicks in.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 5/21/2006 1:58 PM (GMT -7)   
Very cool! You'll have to let us know what they say! Good luck, I'll have my everything crossed for you! Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/21/2006 11:44 PM (GMT -7)   
hey.  i wish you the best.  for me, upping the doseage of Humira 40mg to every 4 days made  drastic improvements i think.  if i had stayed on it every 2 weeks like usual...i don't think i would have ever reached the point where i could walk.  plus adding the Imuran i am sure helped a lot too.
everybody is different, so this just might be key!
 
take care
erin
Active, Severe RA. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred; Pentasan 4G; Imuran 50mg; Dilaudid; Diazepam; Avinza 30mg; Meclizine; MiraLax & too many others.

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