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dizzyb	Nov-26-04, 10:09 PM (CMT)
"Actiq lollipops"
My neuro gave me 6 samples of this drug and I obtained 100% pain relief within 15 minutes or even less!!!! I am so excited as NOTHING has been able to completely relieve my 24/7 baseline pain and my 4/wk excruciating migs. I can't wait to call and tell him. Has anyone else tried these? They also come in lozenges. I first heard about the lollipops from a news report about the fantastic effect they've had on our wonderful soldiers when wounded. Docs found that popping this Actiq lollipop in their mouth gave them quick relief and they didn't even need to give them anymore meds for 6 hours!! Incredible, right? My neuro warned me that he thought there wasn't a chance in hell that my insurance, Medicare, would cover the Actiq lollipops. I asked the pharmacist how much they cost w/o insur and she said they come in packages of 30 which cost over $1700! Of course the one thing which could give me my life back is out of reach thanks to my lovely disability insurance. It will keep me disabled alright. Warning! These are to be used in opiate dependent patients only in most cases. The lowest dose one can be used but it would probably make you very sleepy. Most of us have heard about the Duragesic patches which contain the same drug - fentanyl - that is in Actiq. Does anyone have experience with Duragesic patches? As my insur may cover those. In my case, after years of methadone, and just recently switching to OxyContin, when my pain lifted I felt so energized and not a tad bit "dopey"! I just wanted to pass this info along cuz maybe it could help someone who is on the extreme edge of the bell curve of migraine frequency and pain like me. B
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RE: Actiq lollipops, Anna's Mom, Nov-27-04, (1) RE: Actiq lollipops, magicmom, Nov-27-04, (2) RE: Actiq lollipops, Anna's Mom, Nov-27-04, (3) RE: Actiq lollipops, lesherb1, Nov-27-04, (4) RE: Actiq lollipops, magicmom, Nov-27-04, (5) RE: Actiq lollipops, dizzyb, Nov-27-04, (6) RE: Actiq lollipops, Anna's Mom, Nov-27-04, (7) Cheryl, dizzyb, Nov-27-04, (8) RE: Cheryl, Anna's Mom, Nov-27-04, (9) RE: Cheryl, mishkyn, Nov-27-04, (10) RE: Cheryl, dizzyb, Nov-28-04, (11)

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Anna's Mom	Nov-27-04, 06:31 AM (CMT)
1. "RE: Actiq lollipops"
Dear Dizzy: Anna never tried Actiq even though she has had doctors who prescribe Actiq. I know it is so fast acting, it is unbelievable. Duragesic, being slow acting, is different. But it may work well for you once you get on a high enough dose. It made Anna too nauseated, and she took herself off of it. I'm glad your doctor is letting you try different meds. I imagine you felt so wonderful when that pain lifted. Enjoy those painfree hours! Cheryl
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	magicmom	Nov-27-04, 07:34 AM (CMT)
	2. "RE: Actiq lollipops"
	I was hoping so much that your doctor would prescribe Actiq for you, and that they would work without bad side effects. Check with your insurance company. I didn't think that mine would cover them, but they were actually on our formulary. Otherwise I wouldn't have even tried them. By the way, if you go to Actiq.com, they give you all kinds of information. If your insurance company doesn't cover Actiq, they even have a section for help with that. Fingers crossed that you can keep taking them. Like I said before, my pain management doctor said that he has a migraine patient who takes them around the clock. She has a life back again. The very best of luck!!!!!!
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	Anna's Mom	Nov-27-04, 07:46 AM (CMT)
	3. "RE: Actiq lollipops"
	I checked into an assistance program for Duragesic when I didn't think our insurance was going to cover it. I was told such programs were only for indigent folks. Anna has zero income. But she is not "indigent" (she lives with us, and we are not indigent), and she wouldn't qualify for the program. I wonder if Dizzy would be the same because she lives with her parents. Cheryl
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	lesherb1	Nov-27-04, 08:21 AM (CMT)
	4. "RE: Actiq lollipops"
	I just checked on the price using my prescription drug plan (mail order). I put down 3 boxes for a 90 day supply (of the strongest dose). It came up as a $35 co-pay. $35 is the middle of the road co-pay (my levels are $20, $25, & $55). It amazes me how different companies can be so different. Now....is there any way your doctor can advocate for you with your insurance company? If the Actiq works so well, it would be a sin for you not to have it.
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	magicmom	Nov-27-04, 11:39 AM (CMT)
	5. "RE: Actiq lollipops"
	Hi again...actually, what I meant was that there is a place on the Actiq site where they give you numbers to check on insurance questions. Here is the exact site I went to. Look under "Reinbursments" http://www.actiq.com/patients/aboutactiq/ I've not been feeling super and I guess I didn't explain very well. Because of the holiday, you might want to start a new thread or bump this one next week sometime. I know that there are people on this site that use the patches. They can give you excellent input. I'm sure hoping that somehow, someway you can get the Actiq or the patches!!!! Cheryl, I read your other post on how Anna is doing so well....even driving herself to a mall! Dizzyb and Cheryl, both of you sound so upbeat and happy....it's WONDERFUL!
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dizzyb	Nov-27-04, 03:08 PM (CMT)
6. "RE: Actiq lollipops"
Thanks for the info, magicmom. I've been granted temporary disability coverage which includes MediCal. This insurance has no copay for Rx's in my case. However, there are limits to what they will cover and then I have to get Rx's filled at Costco and simply pay. Unfortunatly, I've already used up my 6 Actiq. I had no side effects from any of the doses. My neuro gave me the second to the highest strength. Wow! I'm so glad that there is a mig patient out there who is allowed to take them around the clock who has a life back. It's almost too wonderful to hope for!! I haven't celebrated Thanksgiving with my family for the last 4 years. Yep, I get to stay home all alone. This is the first year I've moved back home so before I was off in my college town and simply could never make the trip. Thursday was a real sad day for me as my grandpa is dying of cancer and I couldn't make the trip with my family for dinner. (Grandpa says I'm sicker than him - if you look at our functioning, it's true! However, I want to die and he does not.) Cheryl, I was considered "indigent" for about 6 months before my disability was approved. It covered intern visits at the hospital and the basic meds I was on. There was a copay, but it was minimal. For insur reasons, I'm considered to be living alone even though I live on my parent's property. This is very beneficial to me as I qualify for much more alone. My parents have a furnished studio apartment created out of part of our garage behind their home which they've previously rented out. Lesherb, it would indeed be a sin to not be able to utilize Actiq. MediCal has really stepped up in the case of Imitrex injections - my poor dad has on several occassions spent out of his teacher's salary over $100 an injection for me in an emergency. They now, after a doc DID advocate for me up my allowed Imitrex injections (only thing that really helps) from 2/mo to 10/mo!! I do have some hope however my neuro, who has worked with MediCal in extreme cases such as mine seems to think there's no hope. After the miracle of my getting disability on the first try and at 26 with "only" a pain condition, I believe in anything! It's true, magicmom, my posts have been quite depressing as have I over the past few months. I've been wanting to die so bad as I've watched my hopes, dreams, and youth wither into living back at home and spending every sec in bed. This Actiq has been a glimmer of hope. I'll call my neuro on Monday. B
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	Anna's Mom	Nov-27-04, 03:22 PM (CMT)
	7. "RE: Actiq lollipops"
	Dizzy: For over a year I have been paying Anna's share of rent on an apartment in Chicago (with her brother and another roommate). The rent is cheap, and I keep paying it hoping she will get better and actually live there some day. It helps to keep hope alive for her. And it gives us a place to stay when we see her Chicago neuro. There she is indigent!!!! Because her income (zero) should not be added into the "household income" of the other two. The third roommate is not even related to her. They aren't supporting her. We are. But when she is at home with us in our house, then I guess she is not indigent. And I cannot fib. I could get her free health care in Minnesota, but I haven't applied yet. She has to live here more than 50% of the time to get it. This year she certainly qualified. But I am the eternal optimist. (She can get better, she can get better). I'm glad you get good benefits with your living situation. Makes sense to me. Good luck trying to get the Atiq covered! You can do it. Cheryl
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	dizzyb	Nov-27-04, 04:52 PM (CMT)
	8. "Cheryl"
	I am a natural born fighter. Stubborn to the end. Because of this, I refused for years to give in to the truth of my situation. This only hurt me in the end. I've been on my own officially since 18, but paid for my own schooling, clothes, school supplies, rent to my parents, etc. since a young teen. My young parents were going through college and there simply was no money for much. I graduated high school, gained my Associates Degree, and transfered to UCSanta Cruz (all the while working at least 2 jobs)- a school I couldn't get into without good grades. It is also expensive and the gorgeous beach town has an incredibly high rent situation. It was my dream, however. I made it this far and wasn't going to stop for anything - my migs progressed to where my boss would escort me to the campus urgent care. I was in such denial of how sick I was. After 3 years of heart-breaking struggle and student bill debt, I succumbed to my wiser self. At that time, I was severely jaundiced, vomited constantly, and could hardly walk. It turns out I unknowinly had been suffering from gall bladder disease, had a tumor in my pancreas, but this paled in comparison to the severity of my migs. Having the incomparable UC system's insurance enabled me to aggressively see countless experts sadly, to no avail. It was so scary to give that up though. Now, although, I am quite sad in my situation of near constant bedrest, I am much healthier. It has taken me humbling myself and honoring my body. My parents and I have never "fibbed" to the authorities. The backyard studio is legally considered a separate residence. Any other facts of my financial, living situation, and health were helped at the advice of the Social Services people. For me, it is survival. Our country's medical coverage of it's people is unethical and despicable for such a wealthy nation. It took me a long time to get over the fact that I was young, intelligent, and driven and accept the fact that I HAD to face the facts and focus on taking care of my health. Cheryl, I know that you will never give up hope with your daughter and I love you for that. Alone, facing death if I didn't have 3 surgeries, and living on college friend's couches, I made the devastating decision to put my education, relationships, and stubborness to never give up, second to my painful reality. Sometimes "giving up" the constant frantic search for a cure is the wisest thing to do. The emotional roller-coaster of hope with a new treatment and the crash of the doc giving up on me truly would have been the death of me. Taking a break, I believe, has been very good for my psychological health. Sorry for the long post - it helped me encourage myself in my painful decision to "drop out" of everything for a while. It stings sometimes, although, I know it was not your intention dear kind lovely Cheryl!, to feel like people would think I received indigent care (which was frightly bare) underservedly. Please, don't take this wrong. I admire your tenacity so much! It was just how I was on my own behalf for so many years - I just wanted to make the point that sometimes it is wisest to listen to your body and just let up on the constant trails of cures. Much love and respect, B
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	Anna's Mom	Nov-27-04, 05:47 PM (CMT)
	9. "RE: Cheryl"
	You and your family made the right decisions, Dizzy! I congratulate you all. The apartment sounds like a good solution. Here we call them mother-in-law apartments. I worry about making a wrong decision and then losing health coverage. Because it gets so complicated when you have a young adult child who is sick. I know two other families who are in the same situation. So far we have all kept our kids insured. You have been very strong through your ordeal. And so much you have accomplished! Be proud! You deserve help. That's why we pay into the programs. To help those who are sick and can't work. Take care, Dizzy. I'm sorry if I said things the wrong way. Cheryl
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	mishkyn	Nov-27-04, 11:38 PM (CMT)
	10. "RE: Cheryl"
	Dizzyb~~ I have been hearing about more and more headache patients who have been getting help from Actiq. Trouble is, drs rarely want to Rx it. It was developed for end stage cancer patients who are too ill to take any pills and often need the quick rush of pain relief because of pain flares. But...I do know someone whose dr regularly writes her scripts for Actiq, and she is one happy clam--or was, until they changed the formula. Since you probably started on the new formula, it won't affect you anyway. Because she did not like the new ones--says they fell apart in her mouth and made her sick, her dr found a pharmacist to compound a nasal spray with the same ingredient--the fentanyl. And she says the spray works quite well. Wish you luck. Perhaps if your dr will help you lobby your insurance for the med, you will succeed. Just don't take no. And good luck. Mishkyn
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	dizzyb	Nov-28-04, 01:48 AM (CMT)
	11. "RE: Cheryl"
	Thanks so much for the vote of confidence, Cheryl. Mishkyn, I was afraid of this with the Atiq- it mainly being a cancer pain med, but the fact remains that it seems to be working for other pain conditions. Thanks for telling me that Actiq has helped other headache patients. I hadn't heard of it. It sucks though that I know even before trying to get a regular Rx the suspicious looks of pharmacists, etc. It's simply not acceptable in this country to use opiate pain medication long term unless you are dying. B
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