Prednisone questions

[Robert]

I've got a couple questions about the prednisone. I've been on 60mg a day for almost a month now. Was just curious as to how long before I can expect the dosage to be lowered. Also I started having really bad acid reflux I guess about a week ago. I saw my regular doc on Monday and he gave me Nexium for that. Just wondering if that's a normal side effect of prednisone as I've never had any kind of reflux or anything before.

[Sangye]

Robert, please tell me your main doctor has had you on an acid-blocker while you've been on 60mg pred. That is standard and necessary. High dose pred can quickly destroy your stomach lining. At 60 mg it can happen in less than a week.

[pberggren1]

Normally if the pred is used in conjunction with ctx or another immunsuppressant then one would start to taper off of 60 after a month by 5mg per week until down to 20 or 10 range and then taper more slowly after that. Once down to 10, though, my doc will not let me taper anything faster than 1mg per month.

[Robert]

The only thing they've given me is the prednisone. They also have me using flonase, allegra, and an albuterol inhaler, I guess for my sinus symptoms and my shortness of breath. I didn't know anything about the acid blockers til I read about them on here. I saw my rhuemy last week and she didn't say anything about it. Just to keep taking my meds that I'm taking and wait until she scheduled my cytoxan treatments. I had my first appointment with my general doctor Monday. He didn't seem to know much about WG. Told him about my symptoms and the meds I'm on. I told him about the reflux I've been having and he gave me a prescription for the Nexium. Seems to be working. Actually got some sleep last night.

[pberggren1]

If it were me, Robert, I would ask why I am not being put on oral ctx instead of IV. Oral is more effective and faster working and easier to control side effects. But IV does have a few less side effects.

[Robert]

I asked my rhuemy about that when I saw her last week. She had concerns about my job and how I would handle the oral cytoxan. I work outside in the heat and I'm up in attics quite often where it's really hot. She said with the oral cytoxan you have to flush your system with a lot of water and she was worried i may not be able to keep myself hydrated enough during the day.

[marta]

Hey Robert,
my experience was just a little over a month with the pred wean start. I was put on 60mg on May 10 last year and went to 55mg on June 21, then July 5 to 50mg, July 15 was 45mg and so on until I got to 20 when I was going down 2.5mg every three to four weeks. I am currently on 14mg and going down a mg per month ( I had a setback last October that threw me back up to 60).

Something that you need to talk to your doc about is some supplements to counteract the negative side effects of pred. It leaches calcium out of your system so you really need to up your calcium intake as well as vitamin D (I'm on 1000mg Calcium Carbonate and 2000 vitamin D daily.) There's also a once a week pill a lot of us on here take (and dislike due to the restrictions around taking it) which helps your body maintain as much of the calcium as possible under the circumstances - my version here in Canada is called Alendronate (it's a bone metabolism regulator). As mentioned above an acid blocker is also important - they have me on Omeprazole - a proton pump inhibotor but my initial rheumatologist didn't give me that until I had some bad acid reflux after my flare and IV solumedrol (pred-ish) bursts to stop the flare in October.

I hope this helps. It really irks me when doctors prescribe pred without telling what the negative side effects are or giving you the ammunition to protect yourself agains long term damage. My dad was put on high dose pred and his doc didn't tell him anything about it or give him anything else to protect himself - made my blood boil (pred rage - ha ha). Also pretty cool that you had some sleep last night - that was the thing that got to me the most in the early high dose days, the lack of sleep, and the crazy appetite, but mostly the lack of sleep. Take care and know that this crazy high dose pred thing will pass and things will hopefully get closer to normal (it's all relative from here on in) as time goes by.

[pberggren1]

I would also add Strontium, Magnesium, Potassium, Zinc, and Silicon to bone health supplements. I take everything that Marta mentioned and the ones I just mentioned as well.

[NicShaf]

My Rheumy started tapering me about 6 weeks after I started Preds. I was on 60mg, then dropped 10mg a month until I hit 20mg. Now I'm tapering slower, going to 17.5 next month.
I wasn't told about the acid blocker either, but I wish I'd had one with the high doses. I had acid reflux until I hit 30mg, then it started getting much better.
I'm also on suppliments, calcium and vitamin D. I also had low potassium, but I started eating bananas and raisins throughout the week, and my potassium levels went back to normal.

[Sangye]

Robert, I strongly recommend that you find another rheumy. For a doctor to miss something like acid-blockers on high dose pred.... I have to wonder what else is being missed. It's so basic.

As far as the other suggestions above-- yes to calcium and vitamin D, but unless you already have bone density problems you don't need to be on a drug that messes with your bone density (eg alendronate/ fosamax). Those drugs are very risky and should not be used unless necessary.