DSNS Method & knee replacement

Bones, joints and muscles
1

I will be 79 in August.  I was diagnosed with PMR January 2016 and given 15 mgs prednisone.  I have been on 6 mgs since February 2017. Before February I had attempted going to 5 mgs two times but had a flare each time.  I am considering the DSNS method but cannot find the description of how it works.

Two months ago, late April,  I had  right knee replacement. Unfortunately, I was given blood thinner Xarelto after surgery which caused vomiting blood, a blood transfusion, and discovery of old  ulcers I did not know I had.  Both legs were swollen and the repaired leg was black and blue for weeks.  The repaired leg still has some swelling.  I am currently getting physical therapy to straighten knee and given 150 mgs Ranitidine for the ulcers.  I am also being treated for dry eye.

Last week I had swelling and soreness mid-chest above my breasts and it hurt to cough.  At the same time, a muscle affecting my left hip causes pain when arising from bed.  It gradually goes away during the day.  The chest swelling is still there but does not hurt.

Today, I took 5 ½ mgs pred, hoping that this will be the beginning of the DSNS method for me.  My GP is aware and seems to agree with whatever I do re PMR.  I would appreciate your comments. 

2

Hello Peggy, the lovely Eileen has given us one of the DSNS reductions which are VERY slow and hopefully will work for you.  As you have had problems at 5mg you may indeed find it better to try 5 1/2mg with the following pattern to reduce :

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

If you feel OK at this the point then fingers crossed you will be safe to go all new dose.

Eileen says once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, with no real need to spend a month at the new dose but every one is different as we always say but good luck.

3

Thank you Diana.  Just what I needed.  And thank you too Elaine.

Peggy

4

Hello Peggy. Diagnosed with CGA last October, I have stuck religiously to what the hospital rheumatologist has plotted for me. Starting with 50mg, it's a slow reduction of Prednisone. Now I am on 8mg, August starts with six, then September four. The rheumatologist will assess any further reduction. It has been very successful, I feel so much better, back to playing sport, and there's been no spread lower than temporal region. Being ill is a new concept for me (I will be 75 in August) not had anything more major than a cold and the occasional bought of diverticulitis. I have learned a great deal from forums like these and grateful for the open sharing of 'fellow sufferers'. I am very reliant on medical advice as well. Good to see your doctor is reinforcing your views on medication. 

Wish you all the best. 

5

Hi Peggy 56092, I am at a much higher dose then you, but I am going to reduce with the DSNS method, unfortunately so far my Rheumy and I have not always agreed. But I am pushing forward with a smile on my face! 🙂

6

Given all the stress you have been under - I wouldn't be trying to reduce at all just yet. You should never try to get lower when you have an infection of any sort.

Diana has given you the outline - here is a link to the full monty version:

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

The first pinned post is the reduction plan, the second pinned post is  our "reading list" and links to support sites.

7

Thank you Eileen for your advice.   After submitting my thoughts to this Forum, my arms broke out in red, itchy welts, probably from the ulcer medication.  I am certainly going to stay on my current pred dose.  I just needed encouragement to do so.

8

Sandy, am I right in thinking you have a GCA only diagnosis, so haven't suffered from the pains of PMR?  I don't really know, but it seems to me that as long as your inflammation was brought under proper control at the beginning and you continue to reduce at a rate which doesn't trigger return of symptoms you may find it more straighforward than it is for those with PMR or PMR/GCA.  Perhaps someone with more knowledge of GCA can enlighten me?  On the other hand, now that you are at 8 your doctor will need to slow down your taper so that your adrenal glands can pick up the slack again.  You may not experience GCA symptoms, but you may experience fatigue.  And for some of us from time to time this can be described as "deathly" fatigue.  Just be aware!  And may your journey to full recovery be uneventful! smile

9

Depends on the person I think Anhaga. I know people who had GCA and never had any sign of PMR-type syptoms. Some had both at the start and some met PMR once they got to a low dose.

10

I guess I am one of those lucky ones, Eileen. But as you point out, it could happen, hope this doesn't change with lower dosages. Keeping fingers crossed. So far, so good. Feeling 90% better.

11

Can someone tell me what the DSNS method is, please?

12

Correct. Medication was started immediately with massive injections of Prednisone in hospital.  Now, a series of blood tests  - one every two months (for six months) and one every three months (for six) has been plotted for me by the Rheumatologist. I guess if there is anything untoward, he'll adjust the steroid dose. So far, everything has gone as he predicted. I can't believe it, Anhaga, after nearly a year of nothing but self-pity and misery, I am now feeling almost 90% better. Energy to burn: played petanque without any problem, so has the desire to once-more play competitively come back. Even my tastebuds are (almost) better. Food tastes good! The rheumatologist did say there was no sign on PMR, and a relapse of GCA was pretty unlikely. It is absolute bliss to go through a day without thinking about it. Hope your recovery is just as quick. 

13

'of PMR'! Wonder if I can blame typos, grammar mistakes as lingering side-effects! 

 

14

Hi sandy08116, it as method to taper

1 day new dose, 6 days old dose

1 day new dose 5 days old dose

1 day new dose 4 days old dose

1 day new dose 3 days old dose

1 day new dose 2 days old dose

1 day new dose 1 day old dose

1 day old dose 2 days new dose

1 day old dose 3 days new dose

1 day old dose 4 days new dose

1 day old dose 5 days new dose

1 day old dose 6 days new dose

Then start at top again!

I hope that helps sandy08116!

Good luck, keep smiling 🙂

15

And on what basis does he say "a relapse of GCA is  unlikely"? He CANNOT know - and if you reduce the pred dose too far too soon for YOUR disease activity the symptoms will return. Pred does not cure the cause, it manages the symptoms of an underlying disorder. How that pans out depends on the individual. 

Some of your energy to burn is the pred - it affects some people like that so beware. And the typos, "dyslexia" etc - you could blame either PMR or pred. They both have form!

16

The description and theory are here:

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

17

EileenH, would you please post the Mayo Clinic article on Pred again. Thank you, 🙂

18

I don't know which you mean.

19

Unless it is this one:

https://patient.info/forums/discuss/polymyalgia-rheumatica-and-steroid-side-effects-new-findings-608738

Wasn't me - it was lodgerUK. And is also in the pinned resources post.

20

Yes, EileenH that is the one thank you. I lost it before reading it all. I will save the web site on my phone. I guess one of these days I will have to get another computer. RATS! 🙂 Now when someone asks me to do something, I just say sorry no longer have a computer. Smiling!