TOday I am depressed, not a word that I use very often for myself. I have been waiting over a week for my neurologist to consult with my psychiatrist in regards to raising me back to the full dose of Namenda. After we hit our donut hole last year @ august I went to 10mg/day until I ran out @ november and did without until Jan. and then my insurance/medicare kicked back in and I am now on 10mg/day again which according to my doctors is therapeutic. HOWEVER, according to my neurologist I am declining again even though slowly, they decided to keep me on the 10mg rather than raise me to the the full 20. I think the reason being the same thing would happen again next year and I would have the donut hole issue again and this away lower dose, lower cost it will get me further maybe to the end of the year. At this moment it is killing me knowing that maybe if I went back to the full dose I would stabilze again, but then again maybe not. I feel like I am rambling so and responses would be appreciated.

Tracy

Tracy, glad that you're strong enough to reach out for help. Let's see if I can help, hopefully followed by others.

First, I wonder if you have the right insurance? If you're doing straight Medicare, aren't there supplemental policies that cover during the donut hole? Or, perhaps you need to change to Secure Horizons or some such HMO that manages Medicare?

Re: a specific med, Namenda, perhaps your doctor could arrange to have a steady supply of free meds for you? Many doctors still keep samples on hand, like the Namenda starter pack. Your doctor could ask the Namenda drug rep to keep you stocked up. The Namenda maker likely has a charitable arm that provides medicine for some needy applicants.

Namenda helps me a bit. Not a lot, but a significant amount, and I'd hate to lose that bit.

I hope I did no harm! My intentions are pure.

tracy, go to needy meds.com they have lists of meds that they give you when your doctor fills out a form. usually a 90 day supply. follow the instructions exactly, like sighing it in another color ink than black - why I don't know. and be sure your dr does the same thing. don't forget to have the dr. write a scrips for it to send in with is. I for got that once. I ge tall the namenda and aricept I need from my doc. she is great about it. but can get it from needy meds if I need to. each med has a different form.
usually if you are off a AD med you go down faster and when you go back on you continue at that level. not where you were when you went off. I found out that the hard way.
good luck
Margi

Dear Tracy: I am very sorry to hear you are feeling depressed. You have had to constantly fight an uphill battle this year and have been doing an amazing job. It is understandable that you are beginning to feel a bit frayed around the edges, this has been alot of stress for you.

As an RN, I would have to say though it is possible, it is probably unlikely that the doctor is giving you 10 mg rather than the higher doseage of Namenda based upon the Medicare donut hole issue.

It is more likely that he feels that dose is therapeutic and that there may now be negative consequences of the higher dose alone or in combination with other drugs.

You had mentioned an advancement of your FTD as well as having had some behavioral issues earlier on. Perhaps the doctor is considering this doseage of Namenda appropriate for these new dynamics. Just making a guess.

Why not ask the doctor outright? He will tell you. Also, if this depressed feeling continues and is really beginning to interfere with your life, please place a call and let the doctor know.

Margie's suggestion to go to needymeds.com is a good one, and also, the physicians get boatloads of free samples, so the doctor could provide you with Namenda now or when your benefits run out.

By the way, when Medicare prescription coverage hits the donut hole, the supplemental policy also hits the donut hole. Further, the HMO groups also have the "donut hole" piece too.

Hang in there Tracy. Every morning is a new day and a new opportunity to find your spirits move upward. Let us know how you are as we truly do care.

Hugs to you,

Johanna C.

Thanks for all the great ideas everyone. I tried needymeds last year whe I hit my donut hole and we are $200.00 the allowable income. My neurologist even gave me the info for the pharmaceutical company (Ithink it is Forrest?) for Namenda and we just barely make too much there. Johanna, I think you hit it closest though, that maybe keeping me at a therapeutic dose of 10mg serves 2 purposes it may hold off any unwanted reactions by going back up and two it works best for the donut hole. I will be calling my neurologist today though and hope for a direct answer and I bet you will be right. Thanks for listening everyone. Last night was very stormy and looks like today will be the same.

Tracy

Tracy, I have nothing to add to the helpfull hints that you have already been given I just wanted to know that your in my prayers.

Hope all works out for you!

Tracy,
Thinking of you and hoping things get better.

Tracy: Mentally image being surrounded by warm hugs and loving people, because you are - your forum family is there in spirit with you.

Johanna

Dear Tracy,
You are a treasure. I love your spirit and I admire your courage in facing your daily challenges. Stay strong! Keep the faith! Don't be hard on yourself!

Iris L.