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deener

Vancouver, Canada

#1 Jul 16, 2007
Hi guys....
New to this forum....My husband has had RA for 5 yrs and has been on preds 1 1/2-5 milligram pills....He is looking to cut down but has tried for one month now. He went through extreme withdrawal, the shakes, the night sweats, the food allergies you name it....temp drop...

Found out it is because when you go off Preds your adrenal glands need to produce cortisol on their own because preds supply your body with the cortisol...We know what it is just need to know how long it takes to rebuild the adrenal glands and how long to you have to suffer before it gets better....My husband cannot eat anything as he has allergies to almost everything right now a sure sign of Adrenal Gland problems....

HELP US-WE NEED TO KNOW>>>> THANKS
kimliz59

United States

#2 Sep 9, 2007
Prednisone withdrawal is serious business and should only be done under the supervision of a physician--don't try this on your own!! The longer a person has been on prednisone, the longer the withdrawal time. Please seek medical help with this process--the consequences can be dire if you don't.(Not trying to scare you--just trying to make you aware of the seriousness of this situation.) Good luck and God bless!
kepetersen

Alameda, CA

#3 Jun 3, 2009
I have been on & off Prednisone for the past 18 months. I have had 5 bouts of Pneumonia since 1/08
I have slowly tapered the prednisone and took my last 1 mg tab. 4 days ago. I have increased hand joint pain but mainly just exhausted!! I sleep in in the am and take 2 long naps in the afternoon. i am ready for bed by 8 p.m.
What can I do to get more energy and how lond does this last. I can't believe how exhausted I am all of the time? Anyone else like this??

Thanks,
kathy
kepetersen

Alameda, CA

#4 Jun 3, 2009
I have been on & off Prednisone for the past 18 months. I have had 5 bouts of Pneumonia since 1/08
I have slowly tapered the prednisone and took my last 1 mg tab. 4 days ago. I have increased hand joint pain now but mainly just exhausted!! I sleep in in the am and take 2 long naps in the afternoon. i am ready for bed by 8 p.m. I'm really a lot of fun!!
What can I do to get more energy and how long does this last. I can't believe how exhausted I am all of the time? Anyone else like this??

Thanks,
kathy
Diane Schumann

Winona, MN

#5 Jun 20, 2009
kepetersen wrote:
I have been on & off Prednisone for the past 18 months. I have had 5 bouts of Pneumonia since 1/08
I have slowly tapered the prednisone and took my last 1 mg tab. 4 days ago. I have increased hand joint pain but mainly just exhausted!! I sleep in in the am and take 2 long naps in the afternoon. i am ready for bed by 8 p.m.
What can I do to get more energy and how lond does this last. I can't believe how exhausted I am all of the time? Anyone else like this??
Thanks,
kathy
Hi Kathy- I just went through withdrawl of my prednisione and I am about six weeks off. I think the exhaustion is more from the RA then the withdrawal. As far as joint pain, mine really got worse so now I am on Plaqunil along with the methotrexate.
Connie

Saint Petersburg, FL

#6 Aug 11, 2009
I have had RA for 6 yrs and have been taking high doses of prednisone since I became allergic to Methotrexate. I have taken as much as 60 mg per day of prednisone and am now on 20 mg per day for the past 2 months. Plus, I just bega Orensia (2 infusions so far) and with the infusions, they drip a bag of Deximethosone (sp?) which is like prednison and they tell me it's equal to 85mg of prednisone. So once every two weeks I'm taking 105 mg of this steriod. I am having very bad side effects. Has anyone else taken this high of a dose for very long?
Wally

Schaumburg, IL

#7 Aug 11, 2009
Connie wrote:
I have had RA for 6 yrs and have been taking high doses of prednisone since I became allergic to Methotrexate. I have taken as much as 60 mg per day of prednisone and am now on 20 mg per day for the past 2 months. Plus, I just bega Orencia (2 infusions so far) and with the infusions, they drip a bag of Deximethosone (sp?) which is like prednison and they tell me it's equal to 85mg of prednisone. So once every two weeks I'm taking 105 mg of this steroid. I am having very bad side effects. Has anyone else taken this high of a dose for very long?
Hopefully when the Orencia starts working (usually in 3 to 4 months) you'll be able to taper off steroids completely.

High dose corticosteroids for long periods of time have VERY serious side effects. Diabetes, heart disease, osteoporosis - it's not good.

"Cushing Syndrome" is the name given to the collection of side effects caused by corticosteroid use. I got Cushing's almost immediately after starting prednisone, for other folks it takes awhile for these effects to show up. http://www.nlm.nih.gov/MEDLINEPLUS/ency/artic...

Wow, I've never heard of anyone taking IV Dex with Orencia. The IV Dex is used to prevent an allergic reaction. Orencia is marketed to doctors as the "non-allergic" RA infusion. IV Dex is more commonly used with Rituxan or Remicade. Maybe with your reaction to MTX, your doc feels it's necessary. I think you really need to talk to your doctor.
NZ-Kathy

Napier, New Zealand

#8 Aug 28, 2009
I have been on 20mg predisone per day for about 7 years now for rheumatoid arthritis. I have tried many unsuccessful attempts to lower, but the best I've been able to manage is 18mg before my life is hell again. I jokingly said to my rheumatologist one day that I had fantasies of just locking myself away for a month or so and trying to go cold turkey. I want to be on a lower dose due to other side effects. He said to me never ever do that because my adrenal gland will be so damaged now that it will never produce natural cortisol by itself again. If I went cold turkey or missed too many doeses he said the rest of my bodily organs would go into shutdown and I could die. Okaaayy. I didn't realise the seriousness of it. He told me if I could manage to lower my dosage, at best I would be on a maintenance dose of about 5mg for the rest of my life now.
Cath

Lakewood, NJ

#9 Sep 2, 2009
For those inquiring re prednisone withdrawal. My husband has been tapered off prednisone after 20 yrs. it was used in conjunction with other drugs for immunosupression after a renal x-plant, which just gave out after 19 and 1/2 years. Withdrew from other immnosuppressants prior to prenisone. For several months he was on 10 mgs. and reduced to 5 mg. for several weeks, then to no medication. Now he's excessively tired, has joint pain particulary in his shoulers, mental involvement, low bp and so on. Checked a lot of sites and seems like he has every symtom listed with the exception of fever, and nausea. He has had loss of appetite, but never was a big eater anyway. Looks like these symtoms can last weeks to months depending on how long one has been on the drug. Medical monitoring is highly recommended. Don't do this on your own. We have another follow up in a few weeks.
Michelle

United States

#10 Sep 3, 2009
My dad has been on Prednisone for Crohn's Disease for 28 years, he is 50 years old. He has worse withdrawls than a Heroin Addict. One Dr tells us he will die if he stays on it. He has developed diabetes, congested heart failure, bones are depreciating, high blood pressure, and everything inbetween. When he tried to go down off of it gradually, he breaks out in every crevice of his body- eyelids, arm pits, behind his knees, everywhere. The rash he gets is red, raw, seeping, and has a foul odor, and makes his skin peel. Does anybody know of any way or medicine or anything- to help with the withdrawls. He has also experienced every symptom mentioned in the previous posts. Is there a natural remedy, or a medicaine to help the Adrenal Gland to adjust? Or any kind of medicine to reverse or stop these effects? God Bless each of you, and please if anyone has any info, please post it. We're desperate for any info. If we dont do something quickly... I'm going to lose my dad. Thanks for all your help!- Michelle, Indiana
nicole

Gary, IN

#11 Sep 8, 2009
i am 37 years young and have been on prednisone foe 15 years and ,really trying to get off this horrible med can you tell me how your husband is weening of .i need help trying to ween off ???thanks...
Cath wrote:
For those inquiring re prednisone withdrawal. My husband has been tapered off prednisone after 20 yrs. it was used in conjunction with other drugs for immunosupression after a renal x-plant, which just gave out after 19 and 1/2 years. Withdrew from other immnosuppressants prior to prenisone. For several months he was on 10 mgs. and reduced to 5 mg. for several weeks, then to no medication. Now he's excessively tired, has joint pain particulary in his shoulers, mental involvement, low bp and so on. Checked a lot of sites and seems like he has every symtom listed with the exception of fever, and nausea. He has had loss of appetite, but never was a big eater anyway. Looks like these symtoms can last weeks to months depending on how long one has been on the drug. Medical monitoring is highly recommended. Don't do this on your own. We have another follow up in a few weeks.
Jim

Brisbane, Australia

#12 Sep 14, 2009
I've been on it (along with a few other others) for 14 years and have tried a few times in recent years to give it away and have experienced the devastating tiredness that was mentioned earlier and, of course, the return of the RA pain . The side effects I have had with this drug include thin tearing skin and bruising, especially on my forearms, mouth ulcers and a few others.
Fortunately, six years ago I was made aware of Olive Leaf Extract which has negated most of these. Here, in Australia, itís easily available. For me, it is the best thing to have happened health-wise since I got this horrible disease.
Michelle

United States

#13 Sep 14, 2009
Wow... Thanks a lot. We'll try anything at this point.
Ann

Midland, TX

#15 Oct 6, 2009
I have been on Prednisone (7.5 mg right now) since mid-February. One doctor told me that I could not stay on it forever, but the rheumy I have now says he might leave me on it indefinitely. I am also taking methotrexate and the generic for plaqunil(sp.) The rheumy wants to put me on injectable Simponi. This is a new drug and he said he has only two other patients on it. I feel like a guinea pig, but if I am going to have any quality of life, I have to so something.

I am still very swollen with edema in hands, feet and legs. My hands are painful, stiff and weak. I have overwhelming fatigue and I walk around in a bubble of pain all the time but it does get better late in the day. It is difficult to get up in the morning because my knees are stiff and sore and my legs are so swollen they are hard to use. I'm wondering if there is something else going on here besides the RA. I have been to the Cardiologist and have no sign of CHF, so that is not the cause of the edema.

The only time my symptoms improved significantly was when the first doctor put me on a megadose of prednisone.(Sixty mg first day, fifty second day, forty third day, and so on for six days.)

Has anybody had any experience with the Simponi? I've heard nothing about it besides what the doctor said and what the information folder he gave me said.
Ann

Midland, TX

#16 Oct 6, 2009
Please note that I am not the same Ann as the one who has the sure-fire cure-all on the other discussion.
Ginny

United States

#18 Nov 3, 2009
deener wrote:
Hi guys....
New to this forum....My husband has had RA for 5 yrs and has been on preds 1 1/2-5 milligram pills....He is looking to cut down but has tried for one month now. He went through extreme withdrawal, the shakes, the night sweats, the food allergies you name it....temp drop...
Found out it is because when you go off Preds your adrenal glands need to produce cortisol on their own because preds supply your body with the cortisol...We know what it is just need to know how long it takes to rebuild the adrenal glands and how long to you have to suffer before it gets better....My husband cannot eat anything as he has allergies to almost everything right now a sure sign of Adrenal Gland problems....
HELP US-WE NEED TO KNOW>>>> THANKS
Find a doctor who can rebuild you adrenal exhaustion. It can be done with natural supplementation. Find a Doctor who uses Nutri-west supplements (DSF to be exact). I have seen incredible results!
Jerry DeSoto

AOL

#19 Nov 12, 2009
Never tested positive for R/A but I am being treated for R/A just the same. Several Rhumatoligist's agree that the auto immune condition i have was initiated by a tick bite. I am presently taking 17.5 mg methotrexate and have dropped to 3 mg prednisone. Have been on pred for 18 mos.metho for 5 mos. Never had many side effects even though I was as high as 80 mg pred. However, I am feeling a little pooped after my walks (3-5 miles per day) The pain in my hands, thankfully, has not increased and I haven't been able to make a tight fist in a year. I am open to any suggestion's that will increase my energy level.
veeman

Atkinson, NH

#20 Nov 24, 2009
To anyone trying to get off prednisone good luck and keep trying. I was on between 60 mg and 5mg of prednisone for 11 years. I have not taken any since late September of this year. Even now I have severe leg cramps and severe shoulder aches especially at night. I am tired and always wondering if it is the withdrawal or my condition. I think now most of the pain has been the withdrawel of a real nasty medication. I have recurrent pericarditis and psoriatic arthritis. I have been taking Embrel with great success to help me wean off the roids. This worked great and also helped my psoriasis really well. The best advice I can give to get to no prednisone is this.

1. No alcohol at all- alcohol lowers the effect of the steriod and makes for more withdrawals and more condition symptoms.

2. Drink water- Drink as much water in a day that you can, I notice on the days that I drink more even now. Usually the more I drink the less sore I am.

3. Low sugar and low carbs- This works for me

4. Hang in there- we all now it weening sucks but try to keep stress down and keep positive

5. I also on occassion will take Ultram or aleve for pain with some results in a pinch. I also take Calcium, Magnesium, Glucosimine, and a good Multi with Ginsing in it for some energy. Natures Plus is great.

I tapered a bunch of different ways and never got to zero before. This last time I listened to me instead of listening to Docs that said you should not feel any different on one half of a milligram less. Once I hit about 7 mg I went down a half a milligram every two weeks. And I noticed for the first few days of this regiment I was tired, so maybe you should ween on Friday if you have the weekends off to let your body adjust a bit before going back to work. Well I hope this has been helpful to anyone going through this. I have heard even though you get to zero it can take up to six months to get prednisone out of your system, that is one strong drug. Good Luck all!
Kevin Venice Florida

Venice, FL

#21 Dec 24, 2009
took prednisone for one day on a dose pack. Cant sleep feel lousy any problem just stopping right now?
Wally

Schaumburg, IL

#22 Dec 24, 2009
Kevin Venice Florida wrote:
took prednisone for one day on a dose pack. Cant sleep feel lousy any problem just stopping right now?
Depends on what you're taking it for - but you shouldn't have any problem stopping after one day. Call your doc's office, speak to the nurse or call your local hospital's Ask-A-Nurse helpline.

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