Won with Medicaid for Actiq but can't find Dr to prescribe for off label!!!

Hi, this is my first time on here.

Back in 2012 I was denied actiq on my HMO Medicaid in Texas because I don't have cancer. I took it all the way to the administrative judge review and won. My problem is that I am allergic to all narcotics except methadone and fentanyl. So the only break thru pain medicine I can have is the fentanyl.

Last month I lost my dr that was prescribing it for me. The Texas Medical Board took away his ability to prescribe controlled substances temporarily. He is a fantastic dr and was following all the rules. He had 2 patients die but he won and was found that it was not his fault. But the Texas Medical Board didn't like it, they came in while he was in surgery and took all the files they wanted and then they found that he was acting dangerously to 17 patients. This is not true!!

Anyways, when the 2 patients died he had to get his own insurance and everyone had to pay an extra $50 that was not covered by insurance. I was already having to pay a lot since he wasn't on medicaid. I decided to go to another dr. that I had heard about. He would not prescribe Actiq because it is for cancer, he started doing treatments on me though.

When my dr lost the ability to prescribe controlled substances I had to go and find another dr. I went to the place they recommended but the dr there will not prescribe it either. They are too afraid.

This is so aggravating, I can get it if a dr will prescribe it. Does anyone have any suggestions on what I can do about this? I live in Houston, Texas.

Good luck with finding a Medicaid dr who will prescribe for you what you've been taking. Ever since Senator Charles Grassley send letters out beginning in 2010 to states wanting to know how they were going to deal with high prescribes of pain meds an certain other meds for Medicaid patients, it has gotten more and more difficult. Your will more than likely have to pay out of pocket. Also there have been changes in most state Medicaid programs regarding the number of doses Medicaid will pay for certain pain meds unless the patient has cancer or another terminal illness. Even though you've gone to an ALJ for Medicaid to cover the meds, that may not apply to the quanity that they will pay for.

A new dr will have to get copies of your medical records from your previous dr. Since your dr had gotten into trouble, the other Medicaid drs there are aware that his patients will be looking for new drs. So the fact that your old dr is who he is and has gotten into trouble like he has is a red flag for you. If you are even able to get a dr who will prescribe you the meds you've been taking, it will take a while for the dr to get comfortable doing that. It use to be that if a dr could no longer participate in Medicaid that they could still work with Medicare. Medicare pays much more than Medicaid. But, that is changing. If a dr loses their ability to participate in Medicaid due to misconduct, they may also lose their ability to participate in Medicare.

Sorry I guess this site thought I was cussing when I was not. Dr. F u k e, hope its not bleeped out.

Thanks everyone for your responses.

Jim61938, I am already on the duragesic patches for the long term medication. I have been having chronic pain since 1984, so my tolerance is really high. I get 30, 100 mcgs patches a month and I was getting 112 to 120, 1600 mcgs of Actiq for breakthrough pain. I used to be on methadone with it and some oxycodone. I came down from those thank goodness. But even if I wanted to get back on the oxy I can't because I am now allergic to it. It is so frustrating to have become allergic to all these narcotics.

Mercy&Grace, The doctor that I was seeing who prescribed it was not on medicaid and I had to pay out of pocket to see him. Medicaid has been paying for all of my meds with no problems and I have not had any problems with the doctors prescribing me anything else or the amounts. It is just my problems of being allergic. One doctor said that people come in and say they are allergic so they can get a certain narcotic, I never even knew that until he told me that. It is so frustrating when people do things like that because it hurts the ones that are legitimately allergic like me.

My life had gotten better when I was put on the Actiq, but now I am unable to do anything but lay in the bed and cry and scream when I have breakthrough pain. It is horrible.

Chartreux, thank you for the dr's name. I will check into him. Also, medicaid does allow off label use of Actiq if you have tried everything else and/or allergic to everything else. But even with them allowing it they will make you go all the way to the administrative judge review if you are on high doses. Also, I think Actiq has been out since the the 1970's or 1980's (it's one of those), so it is not that new. It was around 2010 that the FDA changed it to be for cancer pain only. As if that pain is worse. I have a friend who had cancer and the dr is giving her this medicine. She does not have nearly the pain that I have, she is able to run around and drive even when she was getting treatment for it. I am unable to go and do things or even drive. It did allow me to live better at home though and do things that I hadn't been able to do in years. In Europe they allow it for chronic pain. Our whole system is so messed up. They are allowing marijuana in more and more states but they are cracking down on pain meds. It does not make since.

If anyone needs a good dr in Houston, I have two dr names that are great dr's (they just won't give you the Actiq) and they are on medicaid.

I have contacted my Senator to see if he can help. Has anyone ever heard if a medical board can give a waiver to a doctor? I asked the Senator about this and even if they don't, I am hoping that there is something that can be done to allow my dr to prescribe it without threat from them.

Pawnee, another good source to look for a PM dr is Vitals.com.. You should be able to read whether they take your insurance or not too.

Has any of your drs ever mentioned implanting a pain pump since you have allergies of a lot of pain medication? Plus the fact your dosage is so high, I would think you would make an excellent candidate for one. I am allergic to many pain meds & regular meds and I have a pain pump because we ran out of meds to put me on.

Just a couple of thoughts....

straydog, I have thought about a pain pump and have talked with my doctors a little about it. I don't know if fentanyl can be put in it, I thought they used morphine and I am allergic to it. I am also really scared of going that way. I have heard a lot of bad things about it. But I think my doctors want to try others things first and this will be the last resort.

Chartreux, This doctor is in Webster on Blossom St.? That is so weird, the doctor I am going to right now is on that same street. His name is Dr. LaFleur and the place is called Houston Pain Center. My doctor works with several other doctors. He was trying to come up with a doctor that would prescribe it for me and he came up with a dr that no longer works there but he doesn't know where he is. He did not mention this dr's name and I would think that he knows of him since they are on the same street. I will call in the morning but the only problem is that when you start asking if they will prescribe certain narcotics they will tell you no since they think you are just looking for drugs.
I just looked him up and all I see is a Pasadena address but I will call in the morning.

Thanks

Yes, they will look at you as a drug seeker when you start asking about specific narcotic drugs. This is something those of us in pain know all too well. It is fine to mention what you can not take due to allergies and intolerance but never ask for certain medications.

iloveoliver, Dr. LaFleur said it was only for cancer. Do you have cancer and is that why Dr. Burton is giving it to you? Or, is he writing it off label for you? If he is, then I will mention this to Dr. Lefleur and see what he says. He won't give me methadone with the duragesic because they are both long term medications. Methadone is not a breakthrough medication. I really like Dr. LaFleur too, he is really nice and he was trying to find a doctor that used to work there to see if he would write it for me. He doesn't know where he went though. I did find him but he has not returned my call, the lady was suppose to give his nurse the message and tell him.

straydog, Thanks for letting me know that. It is probably me that is doing most of the holding back on it. I am allergic to all narcotics except for two of them which is methadone and fentanyl. I am allergic also to soma, benadryl, and droperidol, and I can't have any tylenol or anything like that ( I am not allergic to it but I had a severe case of mono and it put extreme stress on my liver, my liver is okay now but my doctors say I have to stay away from tylenol now). I have come across a lot of people who have had the pain pump and all of them were having problems getting it refilled on time, they were not getting enough of the pain med and the dr wouldn't increase it anymore or they having other problems or malfunction problems with it, so this scares me. Also, I was getting good enough relief from the Actiq and fentanyl patches that I could actually live (not like a normal person, none of us in pain can ever do that again). I have a website that I developed and I counsel people on how to feed their dogs the right way. All of this has come to a complete stop, I can't do anything but lay in bed now. There is something that can help, it's just not right that I have to go to a pain pump when there is help. I guess my doctor wants to check more and see if there is anything he is missing that would help before he suggests that for me.

I didn't get a chance to call that other dr yesterday. I came down with a severe migraine yesterday, I am going to do it today.

straydog, I am on 200 mcg every 48 hrs for the patches and I was on 1600 mcg, 4 times a day for the Actiq. I had been on these same doses for the past 4 years. The doctor that I saw before I lost my last doctor had me on all of that along with methadone and oxycodone (I wasn't allergic to oxy at that time and she no longer practices so I can't go back to her). When I went to the doctor I just lost, he took me off of the methadone. I had stopped the oxy a few months before seeing him, I had become allergic to them then. I didn't mind not having the methadone because the Actiq and the patches were doing such a good job that I hardly ever used the methadone anyways. But ever since then I have been on the same dose and doing so much better. I do know that in time I would need increases but I believe that would have been a few years away.

Thanks for your information, I will be checking into it.