steroid tapering experience, advice please

Since this is the second fracture in 8 months and I do not foresee ever getting off of Prednisone, we are having a ramp put in when we have our house renovated in a few weeks. Then I'll be covered. I'm only going to get older! Our porch step now is so high I can barely get up. When my joints and muscles act up, my hips do not cooperate. Avascular necrosis would not be a big surprise.

Now I just need some sort of pulley system for the laundry.

Just a few years ago I was doing the Cha Cha Slide and the Cupid Shuffle.

Hi Florence,

Total mg of prednisone I've taken since July has been less than 1000mg and only reason vitamin D was checked was because of other issues of pain since gall bladder removal in May of 2012. Been through CT scans, MRI and all kinds of tests with no results.

So since platelets now stable, I need to get back to life and trying to work (since being self-employed, the real estate agency I was working at for 6 years decided I was costing them money since couldn't get out there and show property as prednisone did a number on me).

My exercise has always been to take care of my house and yard. So far this year I've been able to get out and mow my acre of lawn. Yes, I walk behind a self propelled mower but not a flat yard so is quite the workout every week. Have tons of planting beds and moved 4 cubic yards of mulch a month ago which only took care of half the yard.

It was such a joy after a year of not being able to...plus with other issues I've dropped 30 pounds since January of 2012. Wish it was from trying to but have to look at the good with the bad. Haven't been this weight in over 20 years!

Amen for pain meds (tramadol), as I just want to stop thinking about appointments and doctors until August but I do like to see how everyone is doing with their ITP treatments as we all can hope remission lasts for a long time.

Whew! Anticipation on this 3 month blood work was getting to me so glad this one is over.

Counts dropping (and again told hema not going to take prednisone again - which he kind of shrugged off) but even though dropped from the stable 128 down to 107 in the 3 months, he just stated he will let me go another 3 months as that may be my normal as even before surgery was at 119.

If at next checkup counts go below 100 or if before show my typical signs of upper leg bruising, then think we will be fighting about prednisone again as he doesn't seem to want to offer anything else. But will deal with that fight if it comes up.

Loving this summer as able to spend time enjoying the outdoors...per primary care because of my better activity level on tramadol, I've lost 17 pounds just since May so down to a weight I haven't seen since my 30's.

In the meantime, don't go back until November...Yay! Hope everyone else is having their own level of normal counts.

Jack: I think I'm in the same "boat" as you; for insurance reasons, I won't get Promacta for 2 more weeks and my Hemo is telling me I can't take Dex any sooner than once a month due to steroid side effects. Since my numbers have dropped to 12 yesterday (from 17 last week) and I last took Dex 3 weeks ago, I'm between a rock and a hard place! Did your MD let you take Dex more frequently than monthly when you had to "bridge the gap?" (P.S. Prednisone didn't work much for me, and I haven't yet tried anything but Rituxan--which failed miserably!)

Thanks for updating your situation after such a long time, Lori.

I had blood tests in June and July with the counts being 80 and 100 respectively. My hemo now only wanted to see me 6 months later, as she felt that my situation is stable. I had my bone examined and found that I had slightly low bone density problem, which is still in the range of normality.

I started to take vitamin D and calcium in June, and the pain from my knees and back disappeared after a couple of week. I am keeping on taking these for some time.

Thanks for the update, Florence and Lori,

Glad you both continue to do well! .

Hi Florence, Glad all is going well for your counts and checks. Had my calcium and D checked at the last visit and calcium was okay but wanted me to continue on vitamin D (1000 mg) per day as just a little on the low side.

Other than being told to stay away from those happy gin and tonics (gin okay, tonic water not) and ibuprofen, pretty much back to normal life.

Finally made a general assumption on the pain at gall bladder removal site (nerve damage) and lower back pain (moderate disc height loss at L5-S1). Goodness knows what the heck they did to me on the operating table back in May of 2012! I'm just glad tramadol can be taken as not much else for those other two issues to fix the pain.

dru, hope all is going okay with you. This site helped so much to be able to connect with people and read a lot of the discussions, so want to make sure people know that there are some remissions that happen, even with the huge struggle. Plus+ we never know how long it will last, so will check in to see how peeps are doing and if anything new on treatments. Again, hope you are doing well.

Hi Florence and Lori,

Also glad to hear that you are both doing well. It is always nice to get an update to see
how everyone is doing. And, like you said Lori, we never know how long our remissions will last; and it is good to enjoy them and life when we can. We can take a little breather!

Jack: I think I'm in the same "boat" as you; for insurance reasons, I won't get Promacta for 2 more weeks and my Hemo is telling me I can't take Dex any sooner than once a month due to steroid side effects. Since my numbers have dropped to 12 yesterday (from 17 last week) and I last took Dex 3 weeks ago, I'm between a rock and a hard place! Did your MD let you take Dex more frequently than monthly when you had to "bridge the gap?"

I hope you are not in the same "boat"....my boat has barnacles, a leak, and seems to be slowly sinking into the sunset. :woohoo:

Everyone is different. So do not take my case as what you should do.
Yes, I took Dex a lot last winter (December 2012, January & February 2013). Only did two 40x4day pulses in that time though (both times to get above 4k). Mostly I would do a 20x2day pulse or a 40x2day pulse. Just enough to keep above 10k....maintenance essentially....with weekly or twice-weekly platelet counts to monitor things. After nearly 11 years now, my hema and I know how I react to Dex and it works far better for me than Prednisone. I still have a standing script for Dex as a rescue treatment.
BUT...I really do not advise this for everyone...it is not fun and long-term use can cause issues for many folk. You really have to know how it affects you over time and what your own count thresholds are.

I live with low counts on Cellcept treatment; 10k-20k range. I look at symptoms now, not counts.
But everyone has to find what works for them. It took me years to get over the 'count watch'.


.

Thanks! That helps. Meanwhile, I found 3 articles online about more frequent Dex usage--basically two weekly pulses followed by two weeks rest--that were part of studies to try to force remission in Korean and Chinese subjects. Those studies indicated there were no significant problems resulting from these Dex treatments, but again these were studies of curative rather than maintenance procedures. I know what you mean about "Dex is no fun," I get spacey for 2-3 days after I stop the meds, but like you, it's better than a trip to the hospital and an unknown ER doc messing with my treatment!

Luca, I, too, did the Dex pulses 3 years ago. I did the 40 mg for 4 days followed by a 2 weeks rest. Than another of the 4 day pulses (40 mg). I did this a total of 4 times spread out over a couple of months. I think it was a little over-kill as my platelets had already risen and stayed at a safe level. But, it was the doctor's theory at the time that a total of the 4 pulses would keep me in a better remission. I don't think I would do that many again. Also, I didn't respond to Prednisone at the time.

What I've noticed is that our body reacts to meds different each time. Sometimes, we cannot predict what will work the next time. But, like Jack said, each one of us is totally different on how we will react.

Thanks Dee Dee Marie! I've since read three articles (2 from China and 1 from Korea) where they used Dex pulses as you did over 2-3 months as a primary treatment, and found a good rate of remission (like 60+ percent!) I still don't understand why my hemo insists I can only do a pulse monthly!? I agree it's a temp measure for most, but your experience and that reported in the articles indicates it is a potential primary treatment!

Yes, Luca, some of us get a good remission from the Dex pulses. The doctor from the USC said you can get a 5-year remission with the pulses. I did the Dex pulses the first time I had ITP (back in 2006) and I did get a 4-year remission. The first time I only had to do the one 4-day treatment and had a remission.

Good luck to you!

I think Dex pulses are a torturous way to try to achieve remission, not sure I'd want to go there. For those of you who have, more power to you!

Sandy, I would do it again, but not take so many pulses. I've had a total of 7 year remission: 4 years fist time and 3 years second time (so far still in remission )