Charting steroid doses over last decade

[vivdunstan]

Just typed in my record of my steroid doses over the last decade into an Excel spreadsheet, and graphed it. The vertical axis is for daily steroid dose in mg. I've been on steroids since 1998. Very high doses initially, then got down to 2.5mg alt days. Until a huge relapse in May 2004, when the dose went up, and we've struggled to get it low enough again. My dose is still pretty chunky, and looking at the graph I'm not too far from where I've been for much of the last decade. But - and this is a big but - I am managing on a much lower cocktail of additional steroid-sparing immunosuppressive drugs. I used to be on up to 4 other immunosuppressive drugs simultaneously, to try to reduce the amount of steroids needed to control the chronic inflammation in my brain. But now I'm just on 1 other drug for that. So still too high steroids really, but overall much better. And I am currently managing to lower the steroids. They've caused osteoporosis for me, and hefty weight gain, and are likely to lead to diabetes and glaucoma. But they keep me alive. And I know how much worse I am on too low a dose. I'll be on steroids for life. But that's ok. Better than not taking them!

[PMRpro]

With you all the way there viv!

I only take pred for PMR, nothing else works at present that is affordable. But I have been very lucky over the last 7+ years of pred at above about 10mg for most of the time: bone density hasn't changed significantly even without anything more than calcium/vit D, no diabetes (but then, I eat next to no carbs and that took a lot of pred weight off) and no sign of raised pressures or cataracts (I wish - then I could at least get rid of the distance specs that go on before getting out of bed in the morning and off after I'm in bed, can't function without them!).

So, if I have to take pred for life - so be it.

PS - the eye specialist told me the other week that people either develop raised pressures or they don't, and is of the opinion it is probably something I don't need to worry about after this long. So I imagine she might say the same to you. She laughed when I complained about the lack of cataracts...

[piglette in reply to PMRpro]

My eye specialist told me that he found the majority of people tended to develop eye pressure problems in the first three months of pred. I assume you can get problems further on but he did give the impression it is something one can stop worrying about so much.

[PMRpro in reply to piglette]

That makes a change - not having to worry!

[dijomc9]

I absolutely despise the steroids and the dozens of other drugs I've taken and still take. Currently down go 25mg steroid daily but probably not going to be able to stay this low....just finished 6th infusion Cytoxin and I can definitely feel the decrease. I despise the side affects, my face is round as the moon, huge pones on each side of my neck and hideous weight gain. As if this damned disease wasn't enough, MPA, lungs, kidneys and BV. So many other issues cropping up since 4-16 diagnosis. Essential tremor, dialysis ( I took myself off in Aug) but I'm seriously thinking I'm on limited time there as issues are developing again....I'm so over this disease...I look at death as almost an escape ...fed up! Sorry for the whine. Excuse my tantrum, please!

[vivdunstan Volunteer in reply to dijomc9]

Whining is fine! And understandable. However I have to say you are still in the very early stages of the disease, if that date you've given is a guide. And you're still going through the early treatment. Longer-term it is likely that the medics will put you onto a steroid-sparing immunosuppressive drug like Mycophenolate Mofetil or Methotrexate or Azathioprine. This is taken long-term, possibly for life, but helps prevent your disease from going badly out of control again. And it should allow you to significantly lower the steroids. Some people get off steroids completely. Others typically manage at a very low dose.

I was able to lower my steroids very well after initial treatment. And for years I was down to just 2.5mg every other day. It's only later, in 2004, that my disease came back again. And we had to whack up the dose, and have struggled to get it back down. But we're managing it now.

So hang on in there! Hugs and sympathies. But again you seem to be in the early stages of the disease, and treatment. And things should get better.

I've been living with my illness for 22 years and I'm still here

[dijomc9 in reply to vivdunstan]

Thanks so much for the words of encouragement! I've been sick a long while but only diagnosed in April of 2016. Plus my infusions were set back 3 times because of complications...I shoukd have finished my first 6 in September but actually completed 12-21-16. Again...thanks for the info.....it truly does help!