Notes on failed taper from 4.0mg to 3.5mg

Congrats on ZERO pred! Must be nice...

I was half joking about being lucky to have understanding rheumatologist.  It took work and negotiation. First he was pushing for quick reduction from the beginning and I cooperated with him until I got below 10mg. At that point I started to bring printed pages from this forum and introduced him to DSNS method. Next time when he pressed for reduction, I suggested that he gives me enough pred for me to stay on current dose and in return I will try to reduce, but with understanding that if symptoms show up, I will go back to higher dose.  To make the long story short, I worked with him and now, after 2 years, we have built trust, so it is much easier.

It is not always easy though. It is hard to be assertive, and not to intimidate someone.  3 months ago he looked at the cholesterol numbers and wanted me to take statins. FIrst I pointed out that my cholesterol is high because of the HDL ( 110) and LDL was just outside of the normal.... Finally, when all the talk did not help, I told him that I am not concern about higher cholesterol and will not take statins because of the side effects. Even this appointment he talked about cholesterol; luckily it was down and statins was not mentioned.

magy, you're my hero.  I hope to duplicate what you've done.  How long were you on pred from start to finish?  I counted 51...then I recounted just now and got 52 (math not really my thing).  Mind you, I like to let myself settle into my new dose at least a week before I move on to the next reduction, so I guess I do slow it down a bit.  Its the exact opposite of what I want to do of course, but  PMR is the Captain of this Tugboat.

mark

Hey Nick,  here is something you can do to lower cholesterol without statins by perhaps 10%.  Take metamucil, or whatever brand of soluble fiber your local store sells, and take 1 or 2 teaspoons in a glass of water _just_ before you eat. do this at least 2 times a day, preferably 3.  It will take 3 or 4 days before you notice it working, and by that I mean....well, you'll know what I mean.

It works using the same method that an older medication called cholestipol worked.  It binds your bile acids to the food you eat, and they go out the chute.  Bile acids are primarily made out of cholesterol, so your liver draws more out of your blood stream to compensate.  There's more to it, but that's the cliff notes.

As a side effect, however old you are, your colon will be 18 again, and so regular Big Ben will be envious.  10% is nearly the same effect you get from a low dose of statin.  You'll save on bog roll too.

mark

Mark,

I started on "only" 10 mg what worked for me to get 90% better. My rheum told me to go down 1mg per month, what caused a flare up after Christmas last year. From there I started with 3mg "my" DSNS with 0.5 mg steps, went skiing for 1 week on 2 mg in March, did also 1.5/1.25 mg and 1.25/1 mg steps ( 1 quartered the 5 mg ) and needed 4 weeks from 0.5mg to zero. 

Be active, but not over active. Listen to you body, that's most important!

Blimey - what do you do to get an HDL like that! Mine's about 80 which is also very high and enough to stop any nonsense about statins! Had an appointment with a new rheumy a few months ago where the alendronic acid question made an appearance. I simply said politely she could save herself the work of looking at my (perfectly acceptable) dexa results because I wasn't going to take anything more than calcium and vit D. 

My cousin is on the Atkins diet and his HDL is over 100, and he's 81 and more active than I am.  In my opinion he's cheating though, his family are long lived;  lots of 100 year olds.  My side of the family tends to peg out in their 50's

This is complex question, because I really don't know exact answer. I always had higher cholesterol then normal. I have tried to lower it, without meds, but couldn't. So instead I decided to improve the ratio between LDL/HDL      by working on   purpose to increase HDL.  When I was in my 40's and I started training for  triathlons and my HDL increased from mid 40s to 65-75 range. Since then, I have deliberately added dark chocolate, nuts (almond , walnuts and such) and  red wine to my diet which also boosts HDL.  But all that kept it at 70-75 level.  With PMR it went much higher and now is between 90-110.

I’ve tried all those Nick, but nothing seems to bring my cholesterol down (mine is 340 - perhaps they measure it different in Germany!!)   It will be interesting to see what other people say/do?

I could not bring it down either. So instead I increased my HDL, which lowered the ratio between LDL/HDL below 3.  If you have that ratio below 3 or 2.5, then you have negative factor for cardiac event. Although my total cholesterol went up, because of the ratio, the chances of cardiac event went down.

Here is actual numbers... LDL =151; HDL=102 total cholesterol 268, BUT ratio is LDL/HDL = 151/102=1.5

How very intriguing...

Hey there, good for you at 3 mg.  can you please describe how it took you 6 mo to go from 4 to 3?  Explain why you did that...what were your symptoms, your clues?  How were yu feeling?  Did you go up and down between 4 and 3?  Or did your just stay at 4 for the whole time?  Thanks and best wishes!  

This was before I knew about the

DSNS method, I just did this on my own and I worked for me  took about 6 months to go down 1mg 

I felt a lot better and has less symptoms on the 3mg dose surprisingly 1mg made a difference 

If I had any symptoms like leg aches, stiffness in am orvevenings I took that as a sign and listened to my body

I just went back to the dose that was good for me thecweek before

I cut a 1mg into quarters, yes very fiddley I bought a proper pill cutter 

Basically I used the DSNS method (unknowingly) but spent slot of time at same dose or maybe even going back up (to the weeks before dose)

It was a extremely slow way but I got there.

And stayed at the reduced dose till I was rear ended and needed to go back up to 4mg to help reduce inflammation.

Hope this makes sense  

Once myvwhiplash settles down I will try again 

Good luck 

Then