First week on Methadone

[Joanie60]

So far so good!! For those who don't know me, I have been through every med available, iron infusion, several clinical trials, augmentation, etc. I had symptoms under control with 15mg oxycodone (5mg three times per day) for three years but was creeping up to 20mg about every other day. My doc, God bless her, wanted me to try Methadone.

I am only four days into it but I LOVE it!! I take 5mg at noon and 2.5mg near bedtime. I am hoping, as the drug accumulates in my system, to be able to knock out the nighttime dose. My symptoms bug me terribly during the day, which is why I take the main dose at noon.

The best part is that my symptoms stay level! I run at about 90% relief all day instead of the up and down and up and down of short acting Percocet (the long acting Oxycontin caused all kinds of problems for me, I am weird). I am SO relieved to just be taking meds at set times each day instead of trying to time three or four doses each day based on waxing and waning symptoms...Trying to make three pills last, when I really need four. Suffering so I can stash a bit for a rainy day. Going through a day only taking two pills, celebrating, then getting up in middle of night to pop the third one I tried so carefully to set aside. Lordy, I am exhausting myself just recounting what I have been going through for the last year.

So I will continue to keep you posted. I was so fearful of trying something new, because Percocet is the ONLY thing that has worked. But I may be on the right track, for me, for now!!

Cheers!

Joanie

[debbluebird]

I've been taking Methadone for four years now. I also had tried all the other meds, etc. At one time I was taking five meds a night. I was very drugged. I take 5 mg at 5 pm and another around midnight. Some times that's all I need. Then other times I take another about 4 am. If I'm riding in the car along time then sometimes I take my 5 pm dose early, but then I'm good til midnight. I never take more than three. I just went through two weeks of harder times, but now the last two nights have been fine. It just goes up and down. The way I decide whether to take the one at 4 am are my legs. If my leg wakes me up, I get up and take one. If I only have to go to the bathroom without the leg waking me up, then I don't take one. On my really bad nights, I might have to stay up in the middle of the night, but then I'm able to go back to bed later. Some times I ride my bike for 30 minutes. That seems to do it. If my leg starts, I almost always get up for at least the time it take to go to the bathroom and back. For some reason it breaks the pattern.
If I take more than three tabs, then I itch. I also went through nausea when I first started taking it. It lasted a couple of months. But then it was over.
I hope it works out for you. It certainly has worked for me.

[Joanie60]

I am fighting the nausea, only side effect I have noticed. Anything help?

[ViewsAskew]

I had trouble with itching in the beginning - terrible. No nausea, though. I do have a script for Zofran - for something else - and it worked exceedingly well. It could help. Or try some ginger tea or chewing on some crystallized ginger.

I also found that the methadone is blessedly wonderful for keeping things very even.

So glad to hear it's working for you so well. Hope that continues.

[debbluebird]

I used Ativan, only 1 mg 1 tab. Also used Vistaril. It only lasted a couple of months.

[Joanie60]

Still good, been seven days. Nausea is gone. A bit of itching, but I have dry winter skin anyway. Lots of sweating, but I think I'm in the menopause thing. It is SUCH a relief to have a steady consistent answer to my WED!! I usually take 5mg at noon and 2.5 mg in the evening. Once or twice, I have taken a second half tablet (2.5mg) at bedtime. This is my idea of heaven

Joanie

[debbluebird]

That's good news.

[ViewsAskew]

Very good news!

[Joanie60]

It has been a month on methadone! I am having a bad week. I am prescribed 10mg per day but need 12.5-15 most days. I called my doc to ask if I could increase the dose. The nurse called back and said: nope, not until you see her. No appointments available until MAY!! So I have been all over the map, trying to spread out the doses of 2.5 to stretch out the relief, but feeling crappy all the time instead. I actually broke down into tears last night cause I was so tired of battling the pain. I just gave up tonight and took another 2.5mg (total of 12.5 today) and figured screw it, there are only 28 days in this month, hopefully I won't get any grief on my next refill. It is SO frustrating, knowing that relief is available, but back to the constant battle of trying to make the script last an entire month.

THIS SUCKS.

Sorry, had to get that out. I understand, I am lucky to have a doc who will prescribe it in the first place, but I am just exhausted.

I keep telling myself, this damn disease waxes and wanes...I am just in the mood for some waning. Like: RIGHT NOW!!!

Thanks for letting me vent!!

[Polar Bear]

Oh please do vent..... get it off your chest.
Those tears of frustration need to be let flow.
Woouldn't it be wonderful if there was a cancellation appointment?

[Joanie60]

I am on the cancellation list!! My fear is that since I am switching docs in the practice (mine is leaving Hopkins to go to NIH) that the new doc thinks I am "drug seeking". Which I am, but not in an addict way

[ViewsAskew]

I am on the cancellation list!! My fear is that since I am switching docs in the practice (mine is leaving Hopkins to go to NIH) that the new doc thinks I am "drug seeking". Which I am, but not in an addict way

I sure hope it works out well. Some of us have had good switches....some of us not so good. Really depends on the doc. You'd think that someone in the same practice could talk to the other doc and smooth it over...but sometimes the other doc just has problems with the opioids.

[Joanie60]

Interestingly enough, I will be seeing Dr Salas at Hopkins, the first doc to suggest Methadone but I got too hung up on the name and we agreed to use Percocet. I switched to Dr Guylani for three + years, now am going back to Dr Salas and she is dragging her feet about agreeing to 15mg/day.

But in good news, I had a great day!! Travelled by air for 1 1/2 hours (plus all the waiting before and after) and have still only taken 7.5mg. I think that is all I will need today. So that helps make up for the extra half pills I have been taking before asking for permission lol.

I think I will muddle through this, aiming for, as Ann (I believe) suggested: going for 85-95% coverage. Unfortunately, that requires 12.5 or 15 mg per day sometimes. And other days, like today, only 7.5mg. This was what I was hoping to avoid by using methadone but I guess the nature of my disease is to roller coaster from day to day. There is no "one right protocol" for me that will work day in and day out. Certainly not if I am limited to 10mg per day. Oh well, it is SO much better than Requip!! I have to keep reminding myself of how bad it used to be....

Have a great weekend!

[ViewsAskew]

Hopefully she will come around.

I am curious - have you always had this variability since you started it? Or did this happen after a couple months? I know that I was fine with 10 mg initially. But, around the second month, I started needing up to 12.5, I waited awhile, emailed Dr B, he thought that it just was not enough to start with and an increase was fine. So, my doc increased it to 15. But, I only took 12.5 (and that gave me 100% control). In retrospect, I wish I'd used less each day and only taken more if needed, and not taken an increase on the few nights where I could get myself back to sleep easily and wasn't disrupted often (I was going to 100% back then). Maybe I wouldn't have had tolerance. Or, maybe, from the beginning, I was one of the oddballs who get tolerance.

I am happy I've found a way to manage the tolerance by using occasional pramipexole. I don't love it (I really dislike it), but it keeps the dose from rising.

If you can get her to let you have a bit more - maybe she'll write for 35 o4 40 tablets instead of 30, for example (Dr B has done that for me - just to give a cushion for when I need it, but not everyday) - and you don't need more in the next few months to a year, you likely were just slightly undermedicated. I know you'll keep your eye open for any signs of tolerance.

[Joanie60]

That is it exactly. The first month, I took 5mg at lunch and 2.5mg at dinner. Sometimes I took 2.5 more at night, sometimes not. During the second month, that is when I have felt that 12.5 would be perfect. Some days, symptoms kick in hard and fast (that would be a 15mg day). Most days, I start feeling symptoms at noon (which is an improvement...while on percocet, symptoms kicked in by 10:00am at the latest). Then take 5mg more at six. That should do it.

It is so hard to "sweat it out" when I know relief is a half pill away!!!!!!!!!! hahahah

So yes, I agree, I don't want to mindlessly pop 15mg every day. I know my body, I know when it is a 15 mg day, when it is a 10mg day, and then sometimes the 12.5mg days pop up just to keep me on my toes.

I agree, I hope Dr Salas will just give me a "cushion". I have almost no stash left so I sure won't use more than I need!! Gotta build that stash back up lol