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Hurray! Today is my 1st day without any prednisone! I've been weaning off for about a year now. The last week was especially difficult with headaches, achiness, and some swelling, but I am SOOOO happy to be off the prednisone!! I just really feel like celebrating this one!!!
Thanks everyone for all your support!
[user=262]Merla[/user] wrote:
Hurray! Today is my 1st day without any prednisone! I've been weaning off for about a year now. The last week was especially difficult with headaches, achiness, and some swelling, but I am SOOOO happy to be off the prednisone!! I just really feel like celebrating this one!!!
Thanks everyone for all your support!
Congratulations–I'm very happy for you. Your happiness is contagious :roll-laugh:!!
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
That's awesome!
There's a small group of us that are weaning off pred, I think you're the second or third that has been successful. I'm on my third try in as many years, but this time I'm taking it slowly. I started in Sep09 at 15mg, I'm now down to 7mg/6mg alternating days. I was just lowering by 1 mg every 2-3 weeks depending on how I feel.
Did you ever hit a wall? That's how I feel right now. Every time I've tried this before I've had to go back up to a higher dose at 10 or 11 mg, this time I didn't feel really bad until I dropped to 6mg. It's the lowest I've ever dropped while not in remission; my diabetes and hypertension appear to be reversing, the weight is also coming off that I had gained, but my goal was 5 mg every other day or less. So I was wondering if you did hit a wall and if so, how did you get thru it?
I have no choice any more about weaning off this drug, it has caused too many other health problems. Sadly, with this drug it's not a matter of IF it will cause health problems, but WHEN those problems will occur.
Davit, I'm not Meria and Idk how long she was on pred, but I have been on it for about 12 yrs with varying dosages, from 2 mg to 20 mg. I thought my adrenal glands would look like prunes and be beyond recovery, but it looks like I may be wrong. However, I may have to stay on a low dose for the rest of my life. It's a wait and see game right now. Maybe you can try again but go very slowly, like decrease 1 mg/month.
Merla.
I'm happy for you. I've tried unsuccesfully to get off Pred.
How much were you on and how long?
Congratulations, Merla, that is quite an accomplishment! 😀 Here's to many happy pred-free days!
Take care…..kim
Merla,
Congratulations!! I'm so happy for you, and wish you continued success in your recovery. :roll-laugh::roll-laugh:
Maria
Congratulations Merla, that is some feat, a testimony to your persistence. No wonder you feel like celebrating. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Merla,
congratulation for finaly getting away from Prednison, it's a hard way specially when you have been on for a long time. I am so happy for you
Eva:D
Linda,
you may have to stay on a 1 mg pill since you have been on it so long. I was only on it for 3 1/2 years but I was also on a high dosage 60 mg for several months, couldn't figure out why I had a sleeping disorder, but when they gave me a 1000mg shot I was awake for two days, that stuff literally gave me insomnia and the nurse told me too that this would happen. ugh:angry: not nice. Hope you can wean down to at least 1 mg and hopefully maybe get off it altogether, who knows, since your diabetes and hypertension are reversing, maybe after awhile you can also kick the Prednison. I pray for it.
Eva:D
Eva Holloway
[user=11]linda[/user] wrote:
Did you ever hit a wall? That's how I feel right now.
So I was wondering if you did hit a wall and if so, how did you get thru it?
I have no choice any more about weaning off this drug, it has caused too many other health problems. Sadly, with this drug it's not a matter of IF it will cause health problems, but WHEN those problems will occur.
Linda,
Oh yes, I hit several walls. Most recently this January in fact. Salt Lake City had some terrible smog for about a month and it really had a bad effect on me. To escape the bad air I started hiking in the mountains at night for some relief but that wasn't enough to help me with the symptoms so I ended up increasing my prednisone from my 0.75 mg to 50 mg per day for a couple weeks. Wow did that throw me for a loop! At the same time it solidified my resolve to get off the stuff all together. When I hit the walls I just slowed down how soon I dropped the dose and the lowered the amount that I dropped. I decided it didn't matter how long it took but that I was going to get off the pred.
For the past two weeks I tapered to my 0.75 and then stopped. I've had migraines almost daily the last two weeks. I am very lucky that I have some migraine pills that actually stop the migraine and it goes away. Without that advantage I don't think I could have managed. I'm still working through the withdrawal symptoms (fatigue, swelling, headaches) but they are getting better every day as well – my energy is back and the swelling is going down and the headaches are less frequent. My guess is that it takes a week or two for my body to sort of settle down. I'll monitor and let you know.
Davit, I've been on prednisone for a little over 3 years. That was the only thing that ever gave me any relief before I found AP. Once I started AP 2 1/2 years ago I think I stayed on 10 mg for about 1 year.Over the past 1 1/2 year have tapered down from the 5 very slowly. I found out that every little change was difficult at that point. I think I only went down by 0.5mg at a time until I got to 1mg and then by .25mg. Every time I cut down I would get some swelling and headaches. After a few days I was fine.
Thanks everyone! I'm really looking forward to many prednisone free days!
Merla
Oh I forgot to mention — last week my symptoms were so bad and I realized that I was sooo sensitive to prednisone that I went to my doc, Dr. R in Utah, for help. He gave me a prednisone antigen that I believe has given me some relief as well.
So happy for you Merla,
You are certainly on the road BACK TO HEALTH! I think Dr. R. is real inciteful and we are lucky to have him. I didn't know there was a prednisone antigen.
I read about the Candida antigen he uses, and it sounded interesting. I have never heard of this, either. Have you used it?
Are you going to wean off of antibiotics and diflucan as well?
Best of wishes and prayers,
MMW
Thank you.
Every time I try to taper I get a full body flare. The only head aches I get are tension from my neck and heat helps.
I may try dropping the Minocin at the same time so I don't flare so bad. I have osteopenia and I would like to stop it before it becomes ostioporosis.
Thanks again.
Davit.[user=1619]MMW[/user] wrote:
So happy for you Merla,
You are certainly on the road BACK TO HEALTH! I think Dr. R. is real inciteful and we are lucky to have him. I didn't know there was a prednisone antigen.
I read about the Candida antigen he uses, and it sounded interesting. I have never heard of this, either. Have you used it?
Are you going to wean off of antibiotics and diflucan as well?
Best of wishes and prayers,
MMW
MMW
Yes I took the candida antigen a couple years ago. Actally Dr. R has an antigen for the inversion air and for the wild fire air and I've taken both of them and they helped me too. I also take his antigens for the flu and H1N1 instead of flu shots now and they work really well for me.
What I really like about Dr. R is that he seeks out and uses treatments that really work.
Yes, my goal is to also wean off the doxycycline and the diflucan, and I've talked about that with Dr. R. It is a bit frightening to think about but I'm inspired by others (like Kim) and I know I can get there too. One small step at a time.
Davit,
Full body flare – sounds like what I've been going through. Even going down by 0.25mg at a time I feel it. And man, I hate to cut those little pills! LOL
Never ever give up!!
Merla
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