whats ghe highest dosage of prednisone you've been on?

[Alias]

60 was my highest dose. I think initial blasts of much higher doses are done when disease is advanced and affecting vital organs.

[drz]

I have had Solu-Medrol® or Methylprednisolone Sodium at dosages from 1000 mg per day during my initial treatment for Wegs, 500 mg per day for a suspected Weg flare, and a 100 mg injection in a walk in clinic when having an allergic reaction to an antibiotic . It is given IV or IM usually for a only two or three days but i believe i got it for five days during my initial treatment when in ICU.

Methylprednisolone is a potent anti-inflammatory steroid with greater anti-inflammatory potency than prednisolone and even less tendency than prednisolone to induce sodium and water retention. Since it is 25% more potent than prednisolone or prednisone, 1000 mg would equal 1250 mg of prednisone.

When I got to the nursing home after a couple months of in patient care in hospitals my pred dosage had been tapered down from 80 mg pred per day to around 60 mg and was down to 20 mg per day by time I left nursing home three months later. It took another year to get it down to 5 mg per day.

[vdub]

I have had Solu-Medrol® or Methylprednisolone Sodium at dosages from 1000 mg per day during my initial treatment for Wegs

That sure seems high, but given two people have had it that high, I'm a believer. 1250mg/day for 5 days is really a lot of pred. I can't imagine how hungry you'd be and would think you didn't sleep during the entire time, not mention being agitated, moody, and anxious. How did you feel during that time period or were you too sick to notice any difference? Quite interesting!

Because I've had to adrenal crisis, I have to carry solucortef (injectable) with me wherever I go. I have 400mg kits with syringes in each car and in a travel bag. The travel bag goes with me on all our trips. I was surprised that the TAS in the US or customs in the UK, Ireland and Tahiti didn't raise a fuss, but they didn't say anything and just let it all pass. We had to use the kit in Tahiti, because the cruise ship didn't have any solucortef. This disease is certainly a PITA.

[drz]

That sure seems high, but given two people have had it that high, I'm a believer. 1250mg/day for 5 days is really a lot of pred. I can't imagine how hungry you'd be and would think you didn't sleep during the entire time, not mention being agitated, moody, and anxious. How did you feel during that time period or were you too sick to notice any difference? Quite interesting!

Because I've had to adrenal crisis, I have to carry solucortef (injectable) with me wherever I go. I have 400mg kits with syringes in each car and in a travel bag. The travel bag goes with me on all our trips. I was surprised that the TAS in the US or customs in the UK, Ireland and Tahiti didn't raise a fuss, but they didn't say anything and just let it all pass. We had to use the kit in Tahiti, because the cruise ship didn't have any solucortef. This disease is certainly a PITA.

I was really sick at the time and don't remember much but it was a miserable time I know. I ended up in drug induced coma for a couple weeks too. The steroids probably saved my life and my kidneys but did give me a steroid induce psychotic state for awhile. Being manic was sort of a happy time but some other times were not. I believe I also got some tranquilizers and meds to try help me get some rest and one night I got some Ambien and those meds gave me the worst nightmare I ever experienced or rather a paranoid delusion of being capture by Pakistani terrorists who were going to cut my head off the next morning. This was in the news at that time where they just killed a American journalist in Pakistan. To keep me in bed they assigned a Pakistani aide to watch over me which didn't help at all. They finally called my daughter in middle of night who calmed me down some when she promised to rescue me early in the morning before they could kill me. I didn't sleep at all that night but did stop trying to escape from my bed and waited for her to come save me and she did, probably about the same time the Ambien wore off.

It was a rather unique learning experience and parts of it were humorous later after i regained reality contact. The staff told me a steroid psychosis was an expected reaction to such high dosages so they knew how to handle it and they did a great job. The symptoms vary for people but they told me I was really happy during this time. Some people get real depressed and anxious. Just like people vary in their reaction to getting drunk on alcohol.

[Orpheus]

I turned into a huge raging asshole, i can remember berating my mom too tears. She would leave at times or just sit in a croner in silence, TBH it makes me very sad thinking about it.

If you want to read about my experience i wrote about it here, http://www.wegeners-granulomatosis.c...ice-share.html

I didn't talk about this, i did write that I was on 150mg of prednisone, that was the dosage they put me on after the 1200mg infusions.

[MikeG-2012]

I made a post on the general chat and mentioned i was "only" on 100mg of prednisone. To me that is a very small dose, when i was first admitted a year ago they had me on 1250mg of IV prednisone for 5 days. Just wondering if anyone else has been on that high dosage or higher.

Just a FYI because of the high dosage I got avascular necrosis in both of my knees. Ive been bed ridden for over a year and anytime I had to go out I had to use my wheelchair.

WOW, that is a LOT of prednisone!! YIKES!!

The highest I was on while in the hospital was 200mg.

Orally, the highest I've been on is 80mg.

I get a 120mg IV when I get a Rituxan treatment. It should be the standard 1000mg, but my rheumy doesn't want the necrosis, so he is doing 120mg instead.

[Lindy17]

I was diagnosed on 4/13/16 and was admitted to the hospital the next morning due to the extensive tissue damage surrounding the granulomas in the upper & lower lobes of my right lung. I was given 500 mg prednisone via IV per day and was put on 60mg per day when I left the hospital. Had 1st rituxan infusion (1000 mg) on 4/19, 2nd infusion (1000 mg) on 5/4. My prednisone has been decreased from 60 mg =>50 => 45 => 40 => 35 => 25 => 20 => 15=> 12.5=> 10 over the last 5 months.

By 4/27, I was feeling much better. It was hard to believe the improvement in most of my symptoms. May, June & July were great months for me as I was almost back to my old self pre-wegeners. Mid-August everything changed. Almost all of my symptoms had returned, some were worse than before the diagnosis. I had very little shortness of breath prior to my diagnosis but it's much worse now.

I have an appt with my rheumatologist next week before my rituxan infusion and will talk to her about increasing my pred dose. I hate having to increase the dose because I have a lot of swelling in my face, legs, feet and ankles due to the prednisone.

My thoughts and prayers are with all the weggies out there. It's a hard road to travel, but I feel totally blessed to still be here. It sure beats the alternative!

[Alysia]

I was diagnosed on 4/13/16 and was admitted to the hospital the next morning due to the extensive tissue damage surrounding the granulomas in the upper & lower lobes of my right lung. I was given 500 mg prednisone via IV per day and was put on 60mg per day when I left the hospital. Had 1st rituxan infusion (1000 mg) on 4/19, 2nd infusion (1000 mg) on 5/4. My prednisone has been decreased from 60 mg =>50 => 45 => 40 => 35 => 25 => 20 => 15=> 12.5=> 10 over the last 5 months.

By 4/27, I was feeling much better. It was hard to believe the improvement in most of my symptoms. May, June & July were great months for me as I was almost back to my old self pre-wegeners. Mid-August everything changed. Almost all of my symptoms had returned, some were worse than before the diagnosis. I had very little shortness of breath prior to my diagnosis but it's much worse now.

I have an appt with my rheumatologist next week before my rituxan infusion and will talk to her about increasing my pred dose. I hate having to increase the dose because I have a lot of swelling in my face, legs, feet and ankles due to the prednisone.

My thoughts and prayers are with all the weggies out there. It's a hard road to travel, but I feel totally blessed to still be here. It sure beats the alternative!

I am sorry, Lindy, that the wg symptoms were back. Sounds like the rtx and pred did work but that it might be time for another IV and prob more pred. Sorry. Maybe 10 mg at that point is not enough. In my wg onset I was on 60mg pred for 5 months and only then I started to taper. Very slowly. Hang in there. The beginning is the toughest. In time you and your docs will learn how to beat the wg beast. Sending prayers.

[Alysia]

Btw. I was lucky while being on 60mg compared to others. I slept well. Never gained weight. Only had moon face. And, it made me cook much better then I ususally do. Since then, when I cook something extra yummy, my son asks me how much pred I am on.

[Lindy17]

Thanks Alysia. I agree with you and will talk to my doctor Wednesday about increasing the pred.