I'm sorry but I have to vent! I am so frustrated with the med roller coaster. Lets start form the beginning. Diag in Dec 2004 as sero-neg RA.
Since that time, the RA has reared it ugly head and showed up for the party. So now I'm RA positive. I'm on pred(don't think I"m ever coming off), injectable MTX and for awhile Enbrel once a week. The Enbrel wasn't enough once a week, so Doc made the Enbrel 2 times a week. Started the Enbrel, twice a week and felt the best that I have felt in the last 2 yrs. Even for the first time in 2 yrs my labs were finally normal. Along comes the insurance co., "No Twice a week". Ok, So Doc decides that I should try to get involved with one of the studies that his office takes part in. The drug was Rituxan. So, I go for 3 appointments for the testing to see if I qualify for this drug study. Mind you, to go to his main office is 125 miles roundtrip! Guess what! I don't qualify for this study. Now its been over 2 months since I have had the Enbrel, just been on the MTX and pred. I hurt from head to toe! I feel like I am back to square one! I have been the most miserable person to be around the past 3 weeks.
I'm sitting in the RD's office this morning, I can feel the tears just welling up in my eyes. It takes alot to make me cry ,but I'm so frustrated. So, he first asks me if I would like to try to get into another study, of course my answer is "NO'! He puts me back on enbrel (once a week)and prescribes vicodin. I would like to see him feel this way.
I live in central PA, I don't have many options here. My choices are to travel even farther away. Pittsburgh or Philly?
I could just scream......GRRRRRRRRR
I sympathize with you, Daydreamer. I've also been turned down by my insurance company. They don't care if we hurt, and they don't seem to care if we function, or if we get better. It's a little strange. What it means is, I have to up my prednisone usage. We all know prednisone is cheap, but it causes other, way more expensive problems down the road. Penny wise, pound foolish. They're bent on making a profit at our expense. I've done plenty of venting on this subject.
It is the hardest, darnest thing when dealing with the medical world. The very meds we need to keep us functioning...they either take off the market or the DARN INSURANCE CO's won't pay for it...!
But they expect us to function and lead normal lives...but how the heck can we when the insurance companies we PAY ALL THIS MONEY TOO...tie the hands of the doctors and the patients! Honey...my warm hug go out to you. You are not alone...I hope you feel better soon. I would press the doctor to press the insurance company as to why 2 doses of the Enbrel is important...we pay them to fight for us as well. Roblyn Sorry to hear you're having such a rough time DD. It's so, so hard when you find something that FINALLY works for you and then you have to deal with the insurance companies. It's such a shame that these insurance companies can't see that proper treatment now is way more cost effective than saving some money now. It makes no sense at all. Hang in there girl. It's good to see you here. Your doctor should be doing paperwork to get you the Enbrel twice a week. If he won't do it, call around and see if another Rheumatologist will help you. Whenever a patient is denied, the doctor can get an override in most cases. There is also with most insurance companies a patient advocate. You need to call your insurance company and explain what is going on. Usually this person works in a different department and they can be very helpful with you getting what you need. The other solution is to write a letter to the insurance company yourself explaining your position and how badly you need the medicine and emphasize that not providing this important medicine is more costly in the long run. Remember it is probably some person sitting at a desk that really doesn't know anything about this medicine. They just get a set of rules. But that's what you have to fight against, rules. There are also organizations like the Patient Advocacy Foundation that will look at the restrictions of your insurance company. They actually have you send a copy of your insurance agreement and if there is a loop hole, they'll find it and help negotiate it. If all the above does not work, contact the manufacturer yourself and ask if they have a patient assistance program. Oh, and one more thing might be possible. Some states will help you with extreme medical costs. I believe Enbrel is about 00 street price. Having to take it twice a week might qualify you for some kind of aid if none of the above works. Point is to not take "no" as the answer. Daydreamer I live 30 miles from Erie Pa and my RA is in Erie. Her name is Dr Bryson. She is in a group with other DR's. She is ok but has a different personality. A couple of the other DR are more aggressive. Alot of people in my town go to that group. Good luck I sure hope you get some help soon. PAT We go to drag races near denver Pa every Sept. Nice area.
Humira? It is an injection taken every 2 weeks. That's one of the meds that I
am on and it took about 6 weeks of taking it before it really kicked in. I feel
blessed that Humira and MTX have made me feel almost normal again.
Hope you can find meds that work for you and that are covered by
insurance. Good luck!
Once again Thank you all for the support. I'm glad I'm here!
Deb
Good Idea Deb---go to a doc that you know well, and if that doesnt work, Deanna had some great ideas. Sorry you got off of the enbrel in the first place. What a waste of time huh? Oh well, you had to try. It could have been your miracle. You dont ever know unless you take the chance. Now you have another one. Good luck!
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