DSNS Method & knee replacement
Posted , 6 users are following.
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.
0 likes, 35 replies
Diana112 peggy_56092
Posted
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.
peggy_56092 Diana112
Posted
Peggy
sandy08116 peggy_56092
Posted
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.
Anhaga sandy08116
Posted
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!
EileenH Anhaga
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sandy08116 EileenH
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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.
sandy08116 Anhaga
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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.
sandy08116
Posted
'of PMR'! Wonder if I can blame typos, grammar mistakes as lingering side-effects!
EileenH sandy08116
Posted
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!
Michdonn peggy_56092
Posted
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! 🙂
EileenH peggy_56092
Posted
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.
peggy_56092 EileenH
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sandy08116 peggy_56092
Posted
Michdonn sandy08116
Posted
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 🙂
EileenH sandy08116
Posted
The description and theory are here:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Michdonn EileenH
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EileenH, would you please post the Mayo Clinic article on Pred again. Thank you, 🙂
EileenH Michdonn
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I don't know which you mean.
EileenH
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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.
Michdonn EileenH
Posted
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!
Anhaga Michdonn
Posted
I'm getting really frustrated with my lack of computer. If I hadn't given the guy my money I would long have got a new one from a big company, but I wanted to support the little guy, and he also is having my data transferred from old computer for small charge. But it's been two months! He told me to call him on Saturday around 10 a.m. I did, a few minutes after. No answer. And I called every little while for the next four hours or so hoping I'd get my new laptop before we were well into the long weekend. Guess I'll try again tomorrow. And no doubt I'll hear another excuse, and listen to yet another guarantee that I'll have my computer "for sure" at such and such a time. Sigh.
Michdonn Anhaga
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That's crazy Anhaga, what is the hang up?
Anhaga Michdonn
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Hi Michdonn. He's an idiot businessman. I didn't know, but apparently he does this to all his customers. You get the work done, or the device, eventually, but you have to hound him and it can take months. I should phone him today but right now I actually can't face it. Just got back from physio, which involves walking and taking the ferry, only to arrive home and discover I'd forgotten to take my pills! The cat had helped himself to the vitamins and minerals but fortunately pred tastes so horrible even he couldn't eat it, but he did lick the tablets so I had to throw them away. No wonder I felt strangely exhausted as I came home, I usually have a fair amount of energy after physio!
Michdonn Anhaga
Posted
It hard to stay positive when dealing with idiots Anhaga, but you have to. If you let them drag you down to their level, they will beat you everytime. Have you paid in full for the service?
Tell him that you are coming in to pickup the computer on a day. If it is not finished or if you have paid in full that he can expect a letter from your lawyer. It may help! Think positive and go proactive. 🙂
Anhaga Michdonn
Posted
It's kind of not like that, Michdonn. Picture a man in a cluttered cheap office with a small very old cat called MIss Kitty who lives there. The man has a wife with MS. He hires young men to do the technical work, like transferring data, for him, but I don't think he pays them more than minimum wage. He does good things like keep ancient machines alive for people (he kept one of our early computers alive). And I know I will have all my data when I finally get my computer and it won't have cost a fortune for that to have been done. I am irritated and disappointed it's all taking so long, but the new laptop isn't that expensive as these things go and not worthy of legal action, or even threat of such. But I do like your idea of my setting the deadline. When I'm up to it that's what I'll try.
Michdonn Anhaga
Posted
Anhaga Michdonn
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i don't believe I'd get anywhere by being nasty or doing anything that could be construed as nasty. I just want my computer. However I'll be getting a small tablet to replace my Blackberry PlayBook tomorrow not from this man!) so that should keep me occupied for a while.
Michdonn Anhaga
Posted
Anhaga, nice old man I agree, just be firm. Good luck with your new tablet. I have one, but most of the time I am on my cellphone. Handy and I have gotten use it. Stay positive and keep smiling 🙂
Anhaga Michdonn
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I don't have anything other than a landline. The little tablet is really so I can check email, etc., when travelling. Also handy to play games and keep oneself amused when tired of reading or snoozing on the train. About twenty eight hours by train from Halifax to Toronto, including change at Montreal.
Michdonn Anhaga
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I just do not travel anymore, traveled too much for work, now just enjoy being home, just finished 3 mile walk swinging 5 lb weights, just in time for lunch. Stay positive and keep smiling. 🙂
sandy08116 Anhaga
Posted
I threw back the collection of pills, missed my mouth (!) and pills scattered. I'm sure a preddie fell into Mario the cat's dish. He hasn't shown any adverse reactions or grown muscles.
Empathise on poor customer service from computer person. Worse, when a competent staff member is replaced with a dud. When my laptop did strange things, would hang when I opened a particular programme, I took it to the shop. The excellent Russian technician had moved on, replaced by a young man who immediately rang warning bells in my mind. What he said didn't make sense. Took three weeks of phoning. Eventually got the machine back; he said all he did was 'clean the motherboard'. Back home, opened the programme and it hung!! I am not an expert, pushed a lot of buttons, resorted to a bit of logic and somehow worked out that the desktop link was corrupted.
Michdonn sandy08116
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sanddy08116, if the cat attacks you know he got some of the Devil's Tic Tacs, oh s**t!
Anhaga Michdonn
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Michdonn Anhaga
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EileenH Michdonn
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On our first visit to Canada we arrived at the conference hotel in Ottawa a day early - and assuming we would be able to get a room for the night. Not sure why now. Anyway - it was full. but the same hotel chain in Hull had a room so we were put in a taxi and sent off. A reception we discovered this was French speaking Canada - with a French we barely recognised. We were fine in the restaurant though - written French doesn't have an accent
Michdonn EileenH
Posted
Good for you EileenH, I speak a little German, but no French. About the first 3 years staying in Ottawa, no problem everywhere in Ottawa, Kanata and Hull bilingual. Then everything and everyone in Hull was French, so we stopped crossing the river. It was a shame because we use to like taking some of our visitors to some good French restaurants in Hull. Now I miss the great restaurants in New England, restaurants of really quite poor in NM. But I still have a smile on my face. 🙂