- This topic has 51 replies, 19 voices, and was last updated 14 years, 1 month ago by
.
-
Posts
-
Chris,
When I first tried to get off prednisone about a year ago I didn't understand the connection with my weight to know when I stabilized and I was much too ambitious.
I tried to quit pred at 5mg. That didn't work at all. I learned to reduce by the smallest dose and wait until my weight stabilized and I felt great again. Then … I did it all over again … VERY SLOWLY.
Important to be patient but so hard, I know. And yes, I often tried to take big leaps and my partner was great at reminding me that I might want to be more careful and I reluctantly slowed back down. I decided it didn't matter how long it took but that I would do this, if I only reduced by 0.25mg per year!
Merla
merla ,I am going to start today .regardless of the inflammation I am having the prednisone isnt making it go away anyhow.I need a lymph massage to get it going at this point and i will probably herx after .But i have pain meds and medi-pot for that.the weather lately here hasnt helped me one bit either been in the 30s and very high humidity outside 90% .I miss the winter in Arizona so bad !
chris
I think you're being a little hard on yourself, Chris. Our adrenals normally make the equivalent of 5 mg pred a day in cortisol. If you're taking 2.5 then your adrenals are making some cortisol; altho not an amt equal to 5 mg pred but still functioning. You can still decrease your dose, but as slowly as you want because you're not taking a dose that's high enough to cause your adrenals to shut down.
I was taking 15 mg in Sep09 and have been slowly decreasing, now I'm at 6/7mg alternating days. Even tho this is still higher than 5 mg I'm seeing positive changes in my weight, blood pressure and blood sugar. In fact, I've had to dc the meds for the diabetes because I was having hypoglycemic episodes.
I know we all hate having to take any amt of pred, but 2.5 is not going to cause the same side effects as 10 mg. I guess what I'm trying to say is that you're out of the danger zone, so take it slowly so that you don't get a flare that causes you to have to increase your dose. You're on the home stretch, so to speak.
And Merla, you're a wise person to have taken this much time, and it's a good lesson for the rest of us. My hope is to get down to 5 mg every other day; my disease is so active and my stomach has not healed enough to start AP yet. But you offer me some hope that eventually I may be able to get off of pred completely.
linda ,Your right ! I also Meant to say I have weaned vicodin 2x in 5 yrs and it wasnt easy going and I never told my partner I had an addiction .You and my previous acupuncturist are the only people I have ever admitted this too.We are strong people and will get through all this eventually.I applaud what you said about the doctors with the prednisone how freakin true.I like you and what you have to say is right on .
chris
The first time my husband tried to get off prednisone he went way too quickly even though I warned him it would come back and bit him and it did. (There was little satisfaction in telling him I told you so as it was hard to watch) He just couldn't believe .25 mg in dosage could make a difference. Well, it does.
Switching to every other day dosing was instrumental in helping him wean down. It helps wake up the adrenals on the off days even while your body is basically getting the same amount of prednisone. An example is, if you normally take 10 milligrams a day you change to 20 mgs every other day. Wait until your body has adjusted completely before reducing the amount (this means at least a couple of weeks from the point you feel you are at your base point), not reduce the amount, get antsy, get excited about reducing the med and just dropping again before your body is ready. Yes, I was the prednisone Nazi while my husband was weaning and yes it took a LOOOOOOOONG time. If you are higher than 10 mg, you can usually cut your dosage in half. From 10 mg on, you can try 1 mg at a time until you reach about 5 mg. From 5 mg, you have to do it in half mg increments and then as you edge toward 2 mg or so you need to do it in about .25 mg increments. That's the hard part, you are so close to being done that the thought of taking several more months to get completely off is difficult and it's real easy to jump off into the deep end.
Parisa,I am down to 2.5 mg a day and have been for awhile .I split that in half today.so I am doing 1.25 mg starting today. And see what happens now. I am so close !
chris
Chris that's a really big jump all at once. I couldn't have done that. I cut by .5 and just like Parisa said her husband did by .25 mg and that becomes hard to do.
Good for you Parisa – I think we all need our partners to be prednisone Nazis!
merla ,I was at 10 mg the beginning of 2009 .it took me a year to get to 2.5 mg.And I weaned off the methotrexate at the same time. So are you telling me something i am missing here.Do you think cutting 2.5 in half is too much to start with ? I am a pretty damn tough and determined guy.
chris
Chris,
When you get to 2.5, you can't cut it in half. Go down by .25. So, you go to 2.25, then 2.00, then 1.75, 1.50, 1.25, 1.00, .75, .50, .25. That's why I said it takes a long time. We're talking about 5 months to get down from 2.25.
I only had 4 a day to take at 2.5 mg a pill.I was already started by the time I got to a doctor.I had no doctor or anything for like 7/8 months when I moved from arizona to new mexico.My rheumy dropped me the end of 2008.This is all in my story I think. I just printed a monthly calendar off the internet and started reducing the dose till I got to 2.5 and now I am stuck.It takes time and alot of perseverance and some days I felt terrible but my goal is worth it.I am stiff this morning nothing new .but i got out of bed on my own wasnt easy mind you but i did it. 26 Degrees and 90% humidity no wonder I feel like crap.Its not always drug related when you feel bad !I mean why cant you just be having a bad day !I miss the dry winter of Arizona so much. The inflammation is going away in parts of me slowly. Missed the cold laser treatment yesterday .was also going to rife last night during Tv .sometimes you just need to take a break from all this and say screw it for the day.I feel better as the morning progresses I get up early do my paperwork,put my cash register drawer together and I am basically done for the day .i own a fabric store but i dont work in it.just do paperwork and stuff from home.
chris
Hey Merla,I am at the 1.25 mg dose Its a sliver basically .And I have been at this dosage for exactly a month today .I skipped my dose last night and man I felt bad this morning.Mostly joint pain my feet are already swelling back up .But it rained here last night so I cant tell if that was the cause of my pain or was it the skipped dose.Get thru the day and skip again and see what happens.what do you think ?I cant believe that little fffin sliver means that much ? Any advice would be appreciated .
chris
Merla: Hi! …..Question: you spoke about waiting until your weight stabilizes…what do you mean by that?
I was at 5mg since july and now i am going down .5mg every two weeks. The symptoms i have noticed are headaches and joint pain in my neck only…which is good…thank god not in other places. The headaches and pain seem to only last a few days then everything stabilizes….is 2 weeks in between weaning okay…or is that two fast…..i can deal with the symptoms as long as its only a few days like it has been….I am now down to 3mg….and am sooooo excited….hate the mood swings….but i just kind of laugh at my self during the outbursts and say to myself its the steriods….and that gets me through it. So next week when i go down to 2.5 mg are you suggesting that i start going down by the .25 instead of .5???
Chris: Congrats on weaning!!!! You seem to be doing a lot better!!
It's like Armagedden in my body right now, I've been going downhill ever since I lowered to 6 mg. Low blood sugars with extreme lightheadedness and dizziness happening now about 2 times/day, severe IBS symptoms-I won't go into detail but I lost 5 lbs last night in about 30 mins – and pain/fatigue so bad I can't function at all. I finally gave in and went back up to 7 mg today, I've got to get my fasting labs done so that I can get in to my endocrinologist and figure out what to do. But that requires getting up at 7 am, dressing and driving in rush hour traffic, all before I can eat breakfast. Obviously my blood sugar is very dependent on my pred dose, and in order to prevent a hypoglycemic episode while I'm driving I'm going to have to take a higher dose of pred. Very discouraged right now. :X
[user=1701]Sir Rifes alot[/user] wrote:
Hey Merla,I am at the 1.25 mg dose Its a sliver basically .And I have been at this dosage for exactly a month today .I skipped my dose last night and man I felt bad this morning.Mostly joint pain my feet are already swelling back up .But it rained here last night so I cant tell if that was the cause of my pain or was it the skipped dose.Get thru the day and skip again and see what happens.what do you think ?I cant believe that little fffin sliver means that much ? Any advice would be appreciated .
chris
Hi Chris,
If I were in your situation I would go right back to the 1.25mg dose and stay there until I felt good (no set time) and my weight stabilized. Then only go down by 0.25mg at a time, each time waiting until I felt good -even if that is a year!
Did you skip your dose to try to pulse? It sounds to me like you need to wait longer berfore you decrease each dose and reduce by smaller amounts. Yes, Cutting very small pills into smaller parts is har to do.
I think in my case I could have done better if I had gone down to 0.25mg then pulsed every other day. Maybe I could have avoided all the migraines if I had done that. But I was lucky to have gotten through it when I quit at 0.75mg. I certainly don't recommend that though because of the migraines. I know I couldn't have done that if I wasn't able to stop the migraine attacks-they lasted daily for two weeks.
The topic ‘ Yeah! I've weaned off prednisone — finally!’ is closed to new replies.