Trying to say goodbye to prednisone – looking for some input

[Jeni]

Hi Kevin,

Just thought that I should share with you my experience with my minocycline dosage. Like you, I have been on Enbrel and finally got off of it. What really helped me was switching from 200 mg mino on M, W, and F, to 100 mg mino once everyday. It has made a huge difference! I cannot tell you how much better I am! I am usually a little stiff first thing in the morning, but it rapidly disappears as I move around. I was extremely surprised at the difference it made.

It took me months and months to wean myself off my Enbrel, and that is probably what is happening with you and your prednisone. I think that our bodies get so used to the suppression of our immune systems, that when we ease up, we really react violently.

I live in Washington state too, and was wondering if you have found a doctor that you like? The one that I have been seeing is not really familiar with AP, and I haven't seen my rheumatologist in over a year.

Glad to hear that you think the mino is working!

Take care,

Jeni

[linda]

Good luck with your prednisone battle Kevin. Keep an eye on that weight gain, I initially gained about 10 lbs too, and couldn't get rid of it with exercising. I didn't gain any more for about a year, but then I started craving sweets. I knew better than to give in to them, but even so at that point I began gaining about 10 lbs every 3 mths, I couldn't even keep a wardrobe that would fit before I had to go out and buy bigger clothes. I kept thinking I'm just getting older, I kept trying different diets, but nothing worked. Within a year and a half I had gained 70 lbs and was diabetic.

If you begin to gain more, start craving sweets, get thirsty more often or urinate more often, don't wait, get yourself into an endocrinologist. You may also have episodes of low glucose levels as it will sometimes spike really high and then crash; sweating, shaking, nausea, weakness and dizziness are all signs of low blood sugar and as you probably know, is very dangerous. You can buy glucose tablets for those emergencies, they can be found on the same aisle as the meters, test strips etc at any pharmacy, walmart, grocery store, etc. They're basically sweet tarts that dissolve very quickly.

Hopefully this is just a minor setback and you won't have to worry about any of this stuff. At least you're more informed than most, I know I've said this a hundred times, but these doctors need to lay out the side effects of prednisone to their patients.

[raoptimist]

Thanks, Jeni.  Yes, I believe you're right.  Our bodies become really needy to these drugs and it's hard to stop.  Crazy.

My Rheumo is very good, but not supportive of my change in direction.  I still see her, but not very frequently.  I have a plan to re-visit in December and do a full review of my condition and regimen.

I'm always happy to swap war stories with you. 

-Kevin

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