Reducing Prednisone !!!!!!!!!

[Jayne 14]

Have tried to reduce from 20 mg to 15 mg :::::::: the constant 36 hr headache tells me it's too big a jump so will go back upto 17.5 tomoz for a few days
It's so frustrating



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[Alysia]

yes. it is too fast. try to go more gradually. 1mg a week. so it will be 19-18-17-16..... then stop at 15. wait a bit and then continue. good luck !

[Jayne 14]

Thanks hon
I couldn't work out why my head was pounding so bad till I came on here earlier and realised !!!
Have only got 5mg tablets at mo so will see if my doctor / pharmacy can do 1 mg tablets .
The MTX goes up by a third tomoz so will be really tired ( 7.5 upto 10 mg )
Other than the tiredness on some days on the whole doing ok .
Praying my hair doesn't thin too much ( at mo it's still ok just thinking increased dose MTX may affect it more ) .....????


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[windchime]

Have tried to reduce from 20 mg to 15 mg :::::::: the constant 36 hr headache tells me it's too big a jump so will go back upto 17.5 tomoz for a few days
It's so frustrating

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I tried twice to get down from 20 mg. This last time I went 1 mg at a time every 2-2 1/2 weeks. It has worked much better and I'm now down to 5 mg. I would still get some muscle aches the first couple of days after reducing, but all that has seemed to pass and the last couple of reductions have been with out problems. Good luck to you.

[Tom]

Hello , its been awhile since I've visited the forum. I know your struggle with the pred. I have been on prednisone since the beginning of this trip in 2010. I got down to 1 mg and tried to suffer thru the effects of the reduction. I wound up in the hospital with in a week and should have went in sooner, like when I was reduced to 7 mg. I thrived at 40 mg but wanted to reduce and the Dr's goal was to reduce and take me off if possible. The wegeners unfortunately has destroyed my lungs I'm on o2 24/7. My breathing suffers when I get below 10mg and that is a battle everyday. I've made the executive decision that I will just let things run its course and try to get reduce the pred but the Dr says I may be one that will never be free of it and it happens I guess. No pred., no lungs function it seems. I told him I was okay with that but he isn't. I in no way am giving up but want to encourage you to keep trying the reduction. For some its not easy and it seems the wegeners dictates a lot of lives for the prednisone. I have kidney involvement but they are functioning normally and I assume it is due to the pred also. My nephro is pleased but we are watching them for failure. Good luck.

[feliciamings]

I too have struggled to lower my prednisone.

For two years I have not been able to get under 15 mg... most of that was actually spent at 20 mg. When we have attempted to lower the prednisone we have gone down 2.5 mg for a month until I got to 10 mg... the result was my coughing up blood again so we went back up to 20 where I have remained until recently.

I also very much recommend talking to a nutritionist who can put together customized tinctures for you. Mine is amazing. I have a tincture I take for hormone balance from some of the side effects of prednisone that really effect women... and one for prednisone withdrawal. It is amazing! If you don't have someone near you mine does phone appointments and is internationally renowned. She has transformed things not just for me but for other family members... www.farmicopia.net and Lily Mazzarella is the person you want to talk to... if you would like to look into it. If your symptoms are from the prednisone withdrawal at all she can help!

Good luck!!!

[Jayne 14]

Have gone back upto 17.5 and feel better than Saturday , no headache but tired & achy
Will stick at this dose for 2 weeks I think
Will talk to a nutritionist as suggested above , was thinking of anyway to help get well all the way thro !!
Thanks guys x


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[Bing505z]

Pred' free for 4 months now ...

Here is how I dropped the Pred':

- Jan 2014.... Started with a sinus infection
- Feb 2014.... Hospitalization lead to diagnosis and placed on 80mg/day of Pred' and 20mg/day of CYC
- Late Feb 2014.... Found the right Doc' and taken off 20mg/day of CYC and Pred' reduced to 60mg/day
- First week of March.... First Rituxan treatment and Pred' reduced to 50mg/day
- Second week of March.... Second treatment of Rituxan and Pred' reduced to 40mg/day
- Third week of March.... Third treatment of Rituxan and Pred' reduced to 30mg/day
- Fourth week of March.... Final treatment of Rituxan and Pred' reduced to 20mg/day
- First week of April.... Pred' reduced to 10mg/day
- Second week of April.... Pred’ reduced to 5mg/day
- Third week of April.... Pred' reduced to 2.5mg/day
- Fourth week of April.... No more nasty Pred'


As for the pain during that time: used hydrocodone and toradol like a junkie on the street. At times I thought of crushing the pills into a powder and snortin' it up my nose like I was in a Scorsese film.

It's been 4 months and feeling like I never got sick ... sinuses, lungs, and kidneys have turned around and are doing great. At one time I thought I was never going to walk again, but I'm here to tell you today .... that Rituxan is golden babeyyy .... golden I sayyyy!!!!

[mrtmeo]

My mom was on the prednisone for 2 months at 40mg for induction with RTX.
Her Neph cut the dose to 20mg and for 3-4 days, my mom had horrible muscle cramps/spasms.
This was a big cut, but the neph will try 5mg per month after this.
I sure hope I can determine a flare if it comes up.