!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Prednisone withdrawal

More
14 years 5 months ago #17311 by tacmom
Prednisone withdrawal was created by tacmom
How do you know when the taper is happening too fast? I have done the alternate day therapy since the beginning this time around because my dr was trying to decrease the side effects. I started at 40 mg last Nov, 30 last Feb, and 20 last April. Then recently was tapered down to 10mg and today is supposed to be my last day. (two week taper on 10 mg) I just want to make sure this sounds ok. My legs feel like they could give out anytime if I'm standing for more than a few minutes. Every single joint in my body hurts, but I am really trying to ignore it. The worst is the fatigue where all I want to do is sleep. I need to "snap out of it" quickly because I have a huge party at my house for my brother's suprise 50th bday party this Sat (terrible time with 105-110 heat) and I go back to work on the 15th. I have heard some people say they just can't get off. Is this why? Is it because of the aches and pains? I also wonder if anyone has endured the aches and pains through their tapers and the pain finally went away? I just don't want to be hurting my body because I've heard that tapering too fast can really have some bad consequences. I am going to see my family dr late next week for a physical so I plan to ask her opinion if I am still in alot of pain.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #17313 by karatemom3
Replied by karatemom3 on topic Re: Prednisone withdrawal
I'm no expert but I googled Tapering prednisone and the first three signs of withdrawal symptoms are severe fatigue, weakness and body aches. We taper according to my sons counts and always go down to at least 5 mg every other day. I would call your doctor. Good luck, Joan

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #17321 by milly
Replied by milly on topic Re: Prednisone withdrawal
Hi Pauline,
Yep being on prednisone is pretty bad, but I like you found the taper to be worse. The fatigue and the pain is unbearable sometimes. I was on it for 10 months and towards the end of the taper, from about 10mg down I could only reduce by 1mg a fortnight.
Once when I had finished work and was walking to my car, about a block and a half my legs did give way and I fell over (one very red faced lady).
I hope all goes well with the party and all this stops for you soon.

There is no practice run in life.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 5 months ago #17323 by Sandi
Replied by Sandi on topic Re: Prednisone withdrawal
Pauline:

Whoa woman! My opinion: you have been on Prednisone too long to go from 10 to zero. When you get to 10, that is the point where the taper is supposed to really slow down and ideally, you should go down by 1 mg or 2.5 mg's every few weeks. The body can't handle a taper faster than that with the schedule you've had. A person produces the equivalent of 7.5 mg's of cortisol per day, and when you are on Prednisone, natural cortisol production stops. Your adrenals need time to begin production and without that, withdrawal can be severe.

You are having typical withdrawal symptoms and it can be torture. This is nothing you can snap out of, it's a true body crisis. I remember the jello legs well and remember that it was an effort to even sit up at my desk at work.

If it were me and I had any pills left, I would not just stop taking it like that. I'd stay on the 10 until those symptoms passed, then drop down to 5 for a while. What dose do you have? They make 1 mg. pills. I'd call your doctor and tell her that you need to taper slower and try to get a script for the 1 mg. No one has time for that and I can't believe she had you taper that way.

I am one who can't get off of Prednisone. I've tried numerous times. I have gone down by 1 mg every six weeks and when I got to 3 mg's, I totally shut down. I can't even explain it...I was sitting at work and just sat there unable to move or think. It was like a true adrenal crisis which can include loss of consciousness. I took 5 mg's and within an hour, I was normal again. Google the symptoms of Addison's and that is what happens when a person tapers too fast. Anyway, I had been on Prednisone for 2 years when I tried to taper off, so it's possible my adrenals were shot or, the inflammation from Lupus was just too much without it. I did successfully taper off of it several times before that and did have the fatigue, weakness and joint/muscle pain, but was able to get through it.

It's a wicked drug and getting off can be tricky. I don't understand why they keep people on high doses for months and then cut them off so fast. At that point, what's the huge rush?

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #17327 by tacmom
Replied by tacmom on topic Re: Prednisone withdrawal
Thanks! I do have two 10 mg tablets left so I could take it for two more days or try to see if I can try to break them in half and take them over the next 4 days. My nephrologist is trying to get me off asap because I have developed diabetes (it was pre-diabetes before and my A1NC or whatever it's called is really high) and she thinks it is prednisone-related. Apparently, with the kidney disease I have, if I were to have diabetes at the same time...kidney failure is almost a guarantee if the diabetes spirals out of control. She looked at my labs over the last 9 months and she said the steroids really haven't helped that much so it is not worth keeping me on it. In fact, my labs now look worse than they did and my eGFR is now at 40 and they were at 55 nine months ago. I think if they drop below 15, then I am in kidney failure so they're doing what they can to try to slow down this process.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #17328 by CindyL
Replied by CindyL on topic Re: Prednisone withdrawal
If you have a pill splitter, you should be able to cut them in half. I've done it with 5mg. tabs.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 5 months ago #17329 by Sandi
Replied by Sandi on topic Re: Prednisone withdrawal
Well that is quite a quandary. You may not have a choice. Your sugar should lower as you taper, hopefully that is the case. You might be better off just going to five instead of the full 10. I think I'd call her and ask her advice. Tell her how bad you feel.

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #17335 by tacmom
Replied by tacmom on topic Re: Prednisone withdrawal
I called my dr this morning and she agreed that my symptoms may be withdrawal. She said to go ahead and split the 10 mg ones and take them over other day for the next 4 days then if I am still feeling bad, to give her a call back and she will prescribe 1 mg tablets where I will take 2 mg for two days and then 1 mg only if I feel like I need it. She said the goal is to get my blood sugar under control (it was better this morning, close to the normal range for the first time in a while) and try to get my creatinine level stable.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 5 months ago #17336 by Sandi
Replied by Sandi on topic Re: Prednisone withdrawal
That sounds like a good plan. I'm glad you called. The lower dose should help you feel better (although it's still a fast taper) and your sugar should go down. Good luck, Pauline.

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.