Today, on this somewhat grey Thanksgiving Day, I taper down... yet again! Wooooooo Hoooooo! (🤞🏼)
The rheumy actually gave me a choice; I can take 17.5mg daily for one month, or switch off from 20mg to 15mg, every day, for one month.
I'm betwixt and between, really.
Currently, I am at 20mg, but have been fighting a UTI and God knows what else... Also, we are traveling on Friday and will be away from home, for 4 days. (We're going to experience the Vienna Christmas Markets!!! ✈️🎄🤶🏼🍡🍰🎼🥂🎅🏼🎠 🎁)
I'm thinking the jump from 20 to 15, even though it's only every other day, might be a big one; especially with everything else going on, and that 20 to 17.5 might be more tolerable and less of an impact.
Any thoughts, strong opinions, or personal experiences?
Hi, I dropped from 17.5mg to 15mg on 5th November and started with GCA symptoms last week. I rang the eye clinic yesterday and they were supposed to ring me back. Needless to say, they didn't! So I rang 111 last night and after a few questions they got a GP to ring me. He said "you know your body best do what your gut feeling tells you" So I have gone back to 17.5mg this morning. I think 20 to 15 is too big a drop. Especially when you are going away. Take care Melissa and enjoy your trip. Xx
Thanks Mellisa, I did get a response from them this morning!!! The nurse spoke to my doctor and they said to go back to 17.5mg for now, which I had already done this morning lol. First time I have used 111, was very impressed with their professionalism and concern. Wouldn't hesitate to use them again xx
I agree, would drop to 17.5........you don't want to get in a position of having to go much higher if the bigger drop doesn't work....good luck, enjoy your trip!
I tried an alternate 5mg at that level and it sent me into a tail spin. Since then I stuck to 2.5mg drops, ride the withdrawal then enjoyed some stable time knowing what was what. Since below 5mg I’ve been doing more alternating with DSNS and it’s not easy but going straight into a 0.5mg drop at this level is gruelling and very stressful on my body. It feels like I risk an adrenal crisis.
Swinging about by 5mg from day to day is nuts - that is 25+% difference.
The forecast for Vienna is windy - damp but not particularly cold on Saturday (maybe 10C) before the temperature falls again. You should be home before it snows on Tuesday. But we had 3 or 4 hours of snow this morning that NO-ONE had forecast! Don't reduce before you get home...
Get your ear muffs on matey and as PMRpro said don't think about reducing until you get home, maybe even a couple of days after as the trip will be tiring .
Skiing!! I am amazed by your energy after the last few weeks.
Just remember use plenty of softener not starch in those woolly undies, PMR causes enough funny walks with out rock hard pants!!
Personally I would do 17.5. 5mg is a big drop all at once. In fact I have been known to cut 5mg tabs into 4 or 2.5mg into 2 to produce 1.5mg and then do a 1.25mg drop every 2 weeks! It seems to fool my body and I get less withdrawal symptoms. Especially at the lower doses where each drop becomes higher percentage. I agree about leaving it til after you get home too. Why potentially spoil a lovely trip for the sake of a a few days? X
I would get your trip over and wait until December 1st to reduce. I've decided to use calendar months for my DSNS taper over 26 days, then stick at the lower dose for the remaining days of the month and start the next reduction on the 1st of the following month. That way, I know where I am - well, usually!
I really recommend the DSNS taper - it's so gentle and still gets you there in a month or so.
Please can you tell me what a DSNS taper is ? ( I'm quite new to all this !) my I've gone from 30 to 27.5 to 25 mg in just over a week and don't really feel well enough just yet to taper any mo
Oops pressed reply by mistake 🙄. Yesterday my GP left it up to me to decide whether to taper down but I'm in too much pain ATM but when I do , what is a DSNS taper , please ?
DSNS is Dead Slow Nearly Stop. PMRpro was involved in its development.
Put "Steroid Taper Web Application" into the Search HealthUnlocked box and it should come up. Sandra_123 developed the web app when she was studying computer science - she has PMR. It is endorsed by PMRGCAuk.
When you are into her site, you can scroll down and find three versions of DSNS, taking from 26 to 52 days to get from one dose to the next - really slowly!
If you have any problems using the app, Sandra will help!
I use it to get my monthly 'calendar' on the screen, then I copy and paste it into a document, to live on the kitchen table! It saves me having to write it out, which is what I did before Sandra did all the work for us.
PS 30 to 25 in just over a week sounds very fast. Do you have PMR or GCA or both?
Thank you for that info - really helpful ! I've only got PMR ( diagnosed at the beginning of October ) and had to increase from 15 mg to 25mg to 30mg to get relief from pain . I've tapered it back to 25 mg but am having quite a bit of break through pain so am in no rush to reduce any more ATM . But I shall certainly use it when the time is right . Because of the quite high dose I needed ( and my medical history- back surgery aged 24 , a son with Ankylosing spondylitis) PMR pro suggested I get checked out for spondyloarthopathy . I saw my GP yesterday and he's referring me to the rheumatology department so I'm pleased . What would we do without PMR pro? 💕💕💕💕
DSNS to 17.5mg taking four weeks or so to get there. No doubt at all n my mind.
Why risk going to a dose below what deals with both diseases every other day....allowing inflammation to gradually build up till BANG! You are in a full blown flare ?
As others have said, do nothing until you return home, then 17.5mg (preferably using a slow taper). Definitely not alternating 20mg/15mg daily - too much for body to cope with.
I would leave tapering until after market excursion so that you can enjoy it to the full. I know I struggled to do alternate 15/10mgs suggested by Rheumy at the start of my PMR journey, so did a 2.5mgs reduction 15/12.5mgs. The 5mgs alternate dose meant I missed a whole morning every other day due to fatigue. So I would recommend 20mgs / 17.5mgs.
As most people have said, don't taper till after your break, only a few days so won't make that much difference in the grand scheme of things. Then definitely do DSNS with 17.5. Enjoy the market! Should be amazing
It gives it very cold we are off to Disney Paris on Sunday for a week
I have just packed all base layer stuff and will have so much clothes on will not be able to move but I will be warm .
Lets hope sun shines and its a bit warm
Hi. Firstly look how far you’ve come from 80mg really really great - go you 👏
When I started to taper from high doses I went down by -5 every couple of weeks, but I found the -5mg too big a drop when I got to 20mg, so I did -1 to 19 and so on weekly. The PMR/ GCA devils didn’t notice til I got to 7mg and now I don’t seem to get below it despite a couple of attempt at 5mg (I cant believe I’m talking those figures either)
It won’t beat me though I’ll catch it off guard again 😋
Also glad the rheumy has left the taper plan up to you, don’t rush it though that’s my advice xx
Oh gosh Melissa neither! 20 to 19 one day a week then 2 then 3 then 4 etc until you are at 19 for a whole week. If all is well do the same to 18. Stop if you get pains. I know we are all different but 2.5 was too much for me and my body didn’t like swopping the dose about. When I got to 10, 0.5 suited me better as a drop. First flare ever at 6 mgs due to a chest infection and flu jab too close together I think. Have wonderful time in Vienna. If you have the energy, I’ll see you Wednesday. Xxxx
Wow, SJ, that is D_ E_ A_D S_L_O_W. 😧 I have to at or below 15mg, before they will consider knee surgery... and since I can hardly walk anymore, I would like to get surgery scheduled for February... I'll start 17.5 when we return, next week... and then come back here for advice about a DSNS method that might allow me to get to 15 by mid-Feb.
Oh I had forgotten that you had a deadline and a strong incentive to get down. I can see why you are motivated . I hope that whatever you do totally works for you. The pain and immobility that you are experiencing now is far worse than the niggles I wimp about. X
Yeah.... as long as the severe headache, neck and shoulder pain, and fatigue don't come back I can deal with the niggles... I did for 2 years... when they kept telling me nothing was wrong with me!!!! 🤯 . ...blows my mind!
I screech to a halt too soon I think. The first sign of a PMR twinge. Now I have come to the attention of an Endocrinologist who has proposed a bonkers reduction plan. Fortunately Sarah Mackie is involved too with her steady voice of reason. Patient centred Yey!
Apparently I have a more than 95% chance of reactivating my axis.
Sounds good to me. I could do with it I am sure, whatever it is.
'Reactivating your axis' hope that works for you Sheffieldjane, even if it sounds like something you might read in a car maintenance manual. Wonder how they do that?
But using the Dead Slow approach is also possible with 2.5mg at a time and people have done it - but makes it less uncomfortable. You can still manage 2.5mg per month, you are just a week or two behind but there is a better chance of it working when you only ask your body to deal with such a drop one day at a time and then you give it what it wants for another few days as a comfort blanket ...
Ahhhhhhh, I see the logic! So the reason my Rheumy's 20/15 plan was a bit bonkers is that it was every other day and I was only going to give it what it wanted for one say before depriving it again, yes?
I don't think it is "fooling" your body - it is letting it get used to the new dose slowly. That way you can be fairly sure any returning pain is a flare rather than steroid withdrawal. And you only feel miserable for one day at a time. But don't be complacent - however you do it, you won't fool your body into accepting a dose that is too low to clear up the inflammation. Just won't add up.
Exactly! But listen to your body. And extra rest as it prepares for surgery.
Two of my girlfriends have also had knees and hips this year. We all seem to have reacted to the painkillers and trauma of surgery, we all had severe mobility issues for a while and were not “fit” The man I know had hip replacement was super fit, still scrambling under his car to repair it the week before op. I saw him at op + 6 weeks and he was playing skittles at the pub!!! He had walked 1&1/2 miles to beach earlier in day. So, fitter you can be before surgery the better you recover.......not easy with pain and PMR / GCA.
I would like to toss in a 3rd option.....reduce to 18 mg.
One of the forum’s general guidelines is to not reduce more than 10%, so in your case that would be 2 mgs. Of course this slower option would depend on all that other stuff that may be happening in your life!
Hmmmmmm? Thank you, I like that , but if I can tolerate the reduction to 17.5, that gets me closer to my 15mg goal... I need to be at 15mg before they will consider knee replacement surgery.
Yeah... I need to weigh all the options... The last thing I want is a FLARE, but If I don't get this knee replacement on the books, it will be Spring before I have surgery and I'll be recuperating into Summer! 😲
Cheers! I am really excited, but a bit apprehensive! I used to LOVE to travel (anywhere, anytime!) but since PMR/GCA I worry about getting a flare or not feeling well... all those silly little niggly things we worry about! 🤔
Get the trip done and then start the taper . I have been to two Christmas Markets years ago .Cologne was fabulous but you DO need all your energy ,Have a great time and let us know when you get back how it was . I loved it when I went .
I am Canadian so depends where are you from lol .I have lived here since I was 4 1/2 when my Canadian father died and we were re patriated in 1956 by the Canadian Air Force . to the UK Mother was English even though a Canadian citizen .Long sad story . Hence I am now one of the ( Windrush but Commonwealth victims ) Been here over 60 years at the time .worked ect .then the immigration hammer fell when I changed my job because of the polymyalgia problems .I wanted a less strenous job with less stress .Result !!!!!! .You can't work or have anything So NO job and more stress . Nightmare . Short potted history for you I have a British passport now .
Yeah, I was just kidding, but my husband is British and his Dad was born and raised in Carlisle. WOW! Bummer about the whole immigration thing... I'm so very sorry. It makes me so very angry!!!!! 😡 I just do not understand the logic!!!!! I am happy you have a British Passport, but can you never work now?
HA ha YES I knew you were kidding , Ican work now and at 67 with Rheumatiod and Osteo atheritis and a few other things as well ,have gone back to work to try and regain the financial devastation it caused .They stopped me working and with the solicitors and the home office fees that all took nearly two years to sort out ,I have lost two years earnings and I worked a lot of hours for myself and you cannot claim any benefits I ,Lost my business and stressed out not to mention savings gone now . I have great sympathy for the younger people who have been caught up in this . They if they had mortgages and finance on vehicles considering they cannot work .Will have lost everything . Much as it felt like it at the time .I am not the worst affected .
The Windrush scandal makes me ashamed to be British right now. I am really sorry that you have had this massive dose of insecurity. You are a completely innocent victim of thoughtless ancient policies.
I was born in Kenya. It used to be an interesting talking point, now it is a source of anxiety at airports. Mad world.
In hindsight I do have something to add re reducing. When I was told to go from 20-15 by Dr H, I went to the GP and got 1mg tabs. I went down by 1mg every 4/5 days, depending on how I felt. When I got a cough and cold, just stayed on the same till I felt better. When I told Dr H what I’d done he agreed it was a good plan.
Strange that 1mg tablets are hard to get. When I was bumped up to 60mg I had to take 12x5mg for a while until pharmacy could get 20mg tablets but 1mg was readily available 🤔 Enjoy that market! #jealous
Agree with everyone else- wait until you come back and then either 20- 17.5 or even less20-19 or 18. Have a wonderful time! Think you are really brave to go considering your knee etc but I'm sure you'll have a great time!
Yeah the knee was much better when OH organised this trip... we are staying in a hotel centrally locate and plan to stay in the immediate area... but yes, it seemed like such a good idea several months ago! 🙄 . Thank you!
As you've said you are not completely well with the uti so is it worth risking things. I personally would go for the smaller decrease. Good luck and enjoy the markets. Debby
Given your history this year. I would wait out December on 20 mg Pred per day if it is making you comfortable and able to function ( despite fighting the BUGS) and enjoy Christmas markets, Carols, shopping trips etc. Festive time is a no-no too for reduction.
So, in the New Year, what about the 10% rule. Reduce using a DSNS method by 10%. That would be to 18mg and I would wait out January before another 10% reduction by DSNS in February. Brings you safely to 16mg per day, hopefully.
Why think beyond then. Hope this gives you food for thought.
Remember.....symptoms rule......no reductions if you are unwell / uncomfortable. As PMR Pro would say......looking for the lowest dose to enable you to enjoy life.
Best of luck, Valerie.🌲🌲🌲🌲🌲🌲🌲🌹🌹🌹🌹🌹🧚♀️
( a DSNS success story ....just done 2.5 to 2 mg....after 3&1/2 years since PMR diagnosis and 15 mg Pred highest dose)
Thank you, it does give me food for thought.... BUT, I NEED knee replacement surgery ASAP, as I can barley get around. They won't do surgery until I am at or below 15 mg, I'd like to have surgery in winter so I can recuperate while cold and miserable out... so there is a need to reduce to at least 15 mg asap. Thank you though that dd seem like a good idea... get through the Christmas stuff then taper!
When they place you on the list for knee surgery you could have an 18 week wait for op date. Are you on list?
I had my appointment with surgeon to plan first hip replacement in March when I was on 9 mg Pred per day. He said I want you on 5 mg per day, which I managed by continuous DSNS reductions. It occurs to me that whatever dose you are on the surgeons want you lower before surgery.....is it a commitment thing by the patient?
My 2 hips at last ( nearly 7 weeks since 2nd replacement) accepting that they can support my weight and letting me walk a few paces.
My feelings were the same. But Hubble would not agree to spend so much from our savings. Fortunately, my hips were so bad, no cartilage, and bonelet growth across gap! That it was considered an emergency and wait was only 8 weeks for number1 with NHS work carried out at private hospital and then 5 month wait for No2 with same surgeon. It has been a year on crutches or wheelchair for me.......just taking my first unaided steps. The pain relief is enormous.....I am in love with my surgeon💓
I wouldn't do any reduction until you get back, just getting over UTI as well - nooo - then do the 2,5 drop and see how you tolerate it..Have a good trip! xx
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Dr. Said I should feel almost 100% on 15 mg.?
how to begin a slow reduction from 20 mg?
On 20 mil of pred should the symptomsCompletely disappear
A month at 23.5 (up from 17.5), got me a couple of good days and now back to intense pain and muscle spasms.
Flare at 5 mg press 20 mg mtx
