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That sounds like great news! I hope you'll have many more steriod free and great days ahead for you.
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50 yoa/Polymyositis 12/09 Medication: Minocin 100 mg daily on M/W/F Diabetes 2 10/09 Medication: Metformin 1,000 mg x2 daily
Congratulations, but I have to ask, are you taking anything to support your adrendals now?
I want to get off the Prednisone too, but I always get so much pain, I just can't seem to find anyway to not feel so bad. I can't go to work feeling that way.
That is something to celebrate, for certain!!!
Donna RA and Lyme
[user=41]Donna RA[/user] wrote:
are you taking anything to support your adrendals now?
I want to get off the Prednisone too, but I always get so much pain, I just can't seem to find anyway to not feel so bad. I can't go to work feeling that way.
That is something to celebrate, for certain!!!
Donna RA and Lyme
Hi Donna,
Yes, I'm drinking licorice root tea a couple times a day and taking the prednisone antigen. I get some help from both. Well, I have also been taking some excedrine migraine for the headaches when I need to which probably helps relieve some symptoms too. So far to day I haven't needed anything. Yea!
I also just collapsed over the weekend. Slept a lot and rested. I really try to listen to my body and rest when I need to. I've been okay at work this week, a bit tired, but hanging in there. I also need a lot of energy at work and go home tired just from my day. And I've gained a few pounds but will deal with that when I know I've stabilized.
Merla
Merla congrats I just got off myself and I am having the swelling come back with a vengeance.gonna try a maintenance dose of 2.5 for awhile and see then wean off again.It took me a yr also. terrible terrible drug they dont warn you had hard it is to quit the drug .
chris
[user=1701]Sir Rifes alot[/user] wrote:
Merla congrats I just got off myself and I am having the swelling come back with a vengeance.gonna try a maintenance dose of 2.5 for awhile and see then wean off again.It took me a yr also. terrible terrible drug they dont warn you had hard it is to quit the drug .
chris
Hi Chris,
What dose were you taking before you stopped? I have been sensitive to every little change – even as small as 0.25mg
Merla
merla, I was doing 10mg a day the beginning of 2009 not a high dose compared to others in here who are up to 60 .I am now considering going back on 2.5 for awhile which is where i have been stuck and try again more slowly.I tend to jump with both feet into something regardless of consequences LOL.I have said I AM CRAZY but almost prednisone free so theres much to be said for that.Right now my feet are big and ugly had to dig out really old slip ons to wear around the house from my really big feet days a few years back.I am going to get this under control next few days I am sure just takes some trial and error and patience.
chris
Merla ,I have been doing cold laer treatments past 2 days and havent noticed any improvement yet but hopeful .
chris
Davit hmmm whole body flare up .sounds like just what i am having .What a picnic prednisone is
chris
Sir, you are so right about the lack of information given to patients when they are rx'ed pred, not just about side effects but as you said the difficulty in discontinuing the drug. In 2003 I spent 4 months withdrawing from vicodin, and I can tell you that as difficult as it was, weaning off pred is worse. It is a good drug for life threatening illnesses, but it shouldn't be used as a long term solution for chronic conditions.
I don't blame the doctors for rxing it, just for not educating their patients and letting them know what they are getting themselves into. It can't be easy for any doctor with even an ounce of compassion to treat patients who are in pain and coming to them for help. And I'm not saying that I wouldn't have decided to go ahead and take pred even if I had been given all the information about it; pain is a terrible motivator and it's not easy to choose the long road when you can see a short cut that leads you away from pain. Even knowing that I was risking regaining the weight I had lost and developing diabetes didn't stop me from increasing my dose when my symptoms came back. But everyone at least deserves the chance to make an informed decision. I'm a big advocate of alternative methods of pain control and I also think doctors should give their patients information on those methods so that they can see that they have other options.
My pred RX is 1mg pill. I've been cutting these in half and in half (i.e. quartering them) again to get the smallest doses I can – just a sliver of a pill. I found I don't react so much when I decrease by such small doses. But sometimes the pills get crushed in the cutting process so I have to throw the pieces away and start over again with the pill cutter.
Going to the trouble of cutting up the very small 1mg pills has been worth it, though, because every time I tried to decrease by larger amounts I failed. First I decreased to 5 mg. After 5 mg it gets much harder. At 5 mg I started decreasing by 1/2mg at a time, so first 4.5 mg, until I stabilized. When I felt good again and my weight stabilized I decreased my dose by another 1/2 mg until eventually I decreased down to 1mg per day. Then it became even more difficult. At first I thought I could just stop there cold turkey but that backfired and I felt like crap. That's when my partner came up with the 0.25mg idea. My partner has been great at letting me know when I'm too ambitous and suggested that I needed to go much more slowly and decrease 0.25mg at a time by using a pill cutter. This took a few more months. It worked really well. Now on Day 3 with no prednisone, I'm a little tired and still have headaches (which turn into migraines, so I know I couldn't do this without a good supply of Axert pills and Excedrin Migraine). I feel like my plan is working well. I can do this! All I need to do now is stabilize at 0 mg prednisone. I hope I will stabilize in the next week or two. I am drinking 2-3 cups of licorice root tea a day and 2-3 cups of coffee and 1-2 liters of water (though I should aim for more water). I am also watching my diet (lots of salad and veggies and protein, no sweets, ) and my weight like a hawk.
Yes! 0.25 mg is a sliver! I needed my reading glasses to find it. A pincer would have come in handy, too! Still, the pill cutter made it all possible. My doctor prescribed a 1 mg prednisone pill, much easier to decimate than a 2.5 mg pill
My doctor recommended licorice root tea when I did the HCG diet. It is supposed to help with adrenal fatigue. I figured it would help with prednisone withdrawal.
Hey Meria.
I just wanted to say congrats and I hope things level out for you. Coming off prednisone is really an accomplishment!
Sincerely, Ann
Merla,I applaud your partner.My partner tries to keep me reined in but i get loose occasionally and i try to hard and it back fires on me also .I have to remember slow and easy for this prednisone I am so close .I am going to start cutting them my partner has a pill cutter here somewhere.I got this close I am not giving up just slowing down a little.But first I need to handle the inflammation I have right now and go on from there.Thanx for the clarity of what i need to do next.
chris
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