DSNS tapering

[tulazik3001]

hi I have been trying for over a year to get below 7 mg of prednisone

Decided to try the DSNS method

I am now at 6,5 new and 2. Days of old 7 mg

When I take the new dose the next day I get severe migraines and stomach cramps and from the start of tapering I have lost 4 lbs which I can’t affor at 5 foot 7 and I use to weigh 135 lbs over a year ago when I taper I lose weight I felt the best when on 10 mg of prednisone

My adrenals just won’t wake up My dr wants me to get to 5 mg so I can get tested for addisons

Do you think my symptoms are withdrawal or adrenals just don’t work anymore

Have been on prednisone 5 years and once I get below 7mg I get these sy,proms I listed above?

[PMRpro Ambassador]

Since you are on pred - you have adrenal insufficiency secondary to long term cortisosteroid use. It isn't Addisons, it is your adrenal function still being suppressed by the current dose of pred, even at 5mg adrenal function will be considerably affected, The dose you are on is a typical dose used for replacement therapy in an Addison's patient.

The only way to get the adrenal function to recover is to taper the pred dose VERY slowly - SnazzyD has written extensively about how long it took her. Lots of people struggle with even 1/2mg drops using the slowed tapers.

You can't tell at this stage whether the adrenals aren't working at all any more - you are still on far too much pred for that and if you are unable to reduce the pred dose without all the symptoms of adrenal insufficiency then the only possible alternative I can think of is you being under an endocrinolgist and switched to hydrocortisone. But it does need to be a specialist I think,

[tulazik3001 in reply to PMRpro]

yes I do have the endo and he won’t test till I’m at 5mg and he wanted me to paper 1 mg a month and I ended up in the hospital so now trying the DSNS method and symptoms are bad and I’m tapering 1/2 mg I don’t know how I’m gonna get to 5mg

[PMRpro Ambassador in reply to tulazik3001]

If you can't, you can't and they have to respect a NO!

[tulazik3001 in reply to PMRpro]

thank you for your support and your right about if you can’t you can’t!

[SnazzyD]

Have you tried taking to your bed/sofa for these episodes so that you are not requiring your body to cope with anything else? I have to say I felt the worst around this level of dose and had a hunch that it was too high still for the feedback to tell the adrenal glands to work, but too low a level of Pred to give my body what it needed for the day. My Endocrinologist agreed by the time I saw them around 4mg. I kept going about 0.5mg over 4-8 weeks and became a shadow just creeping about with symptoms of low adrenal function. It eased and when I got to 5mg I started to feel I could get out of bed in the morning. I lost a summer but got my adrenals back eventually.

[SnazzyD in reply to SnazzyD]

My Endo wouldn’t test anyone at 5mg because he felt that even that dose could be suppressive and give no indication of future potential. My test result at 4mg was not very special but a glimmer of hope. At 1.5mg it was much much better and I could tell by the way I felt. He wanted me to reduce by 1mg per month but I refused saying that I had to survive my home life. Instead I introduced 0.5mg over 8-14 weeks depending on how I was. I got there in the end but it was a rough ride.

Pred causes secondary adrenal insufficiency due to being suppressed and Addisons’s is primary insufficiency due to adrenal gland damage such as chemo, surgery, autoimmune attack.

[OldGolfer]

My rheumatologist wanted me to reduce for over 2 years. Every time I reduced below 10mg I had to get out my cane because I became so weak I started the falling episodes - that is way worse than pred side effects. I’m pretty good at getting back up without help fortunately. I told my rheumatologist about this forum many months ago and I think she read it. On my latest visit she advised me to just stay on 10mg as long as I felt like I needed it. I plan to reduce very slowly every few months just to see what happens. This forum is a lifesaver!

[tulazik3001]

good luck to you oldgolfer! Wishing you all the best in tapering❤️