Morning all..I have successfully tapered from 5mg at the end of January to 4mg using DSNS method with no problems along the way..I stayed on 4mg for 4 weeks and thought I would try a .25 reduction which I started last Friday..I started at 1 day new dose and 4 days old just to see how it might go and have also had the 1 day new and 3 days old..anyway I have some general achey feelings that I didn't have before and this is getting me down a bit especially as it was all going so well..not sure if this is SW or not enough pred even after such a small drop..should I forget this taper now and continue with 4mg or keep trying..I have an ESR test on Monday and GP review a week later..I am also going to spend a week helping to look after my 2 year old grandson in a couple of weeks when his daddy is away for work and want to feel well for that! I have also had an osteoarthritis ( left knee ) diagnosis in amongst all this..thanks on advance for any thoughts..
Abandon current taper or?: Morning all..I have... - PMRGCAuk
Abandon current taper or?
The prospect of looking after a toddler would have me INCREASING my dose!! I'd certainly leave the current taper until after that is done and dusted. There are a few good rheumies who say not to try to reduce the dose in the winter - and absolutely NOT over the holiday season, whatever flavour you choose!
Thanks for your quick response..do you think just sticking with the 4mg will sort out these niggles or might I have to treat as a flare? Hope not..but I guess time will tell..
Try and see - but at this stage I wouldn't think it will be too hard. If it doesn;t work - take an extra 5mg for a few days and go back to 4mg and see how that goes.
You have already been given good advice.
Osteoarthritis..............try Flexiseq (a biological not a drug).
Works like WD40. I would not be able to walk without it.
It is not available on NHS - but the big A has it at at a reasonable price. Just buy one to try it.
Thank you for this..I have seen Flexiseq mentioned on here but have not tried it yet..Worth a try..GP recommends Voltarol but information leaflet says not to use for more than 7 days..if only osteoarthritis only lasted that long!!
“…if only OA lasted that long”
With you on that one ! Try flexiseq - but sometimes does need a little while to notice full effect -but by the time you get to end of tube you’ll know -and although quite expensive -very often on offer -
PS -no reducing for a while-always harder in winter-and maybe you’ve reached your “ limit” for now….not forever,, but maybe now!
Hope you get things back under control as suggested by PMRpro
Thank you..I think I probably have reached my limit for now..Will let you know how it goes and will give Flexiseq a go for the knee..
Would WD40 work perhaps? Seems to be able to do almost everything.
Are you volunteering? 😂🤣
I have heard reports of a gentlemen who used it and swore by it! Bit smelly and messy?
In that case as the fingers of my right hand have started being a bit stiff and painful, I'll give it a try and report back. (I'm (was?) an Engineer so don't mind the smell - not sure about my Wife mind🤥)
I’ve been trying Flexiseq and almost to the end of the first tube. Can’t say I’ve noticed much improvement yet but I’d like to try. I’ve just been diagnosed with severe osteoarthritis in both knees and the gp has referred me to a knee surgeon on the public system. I’m not sure if I’d proceed with knee replacements but figure there is plenty of time to consider since the NZ system is incredibly slow. Meanwhile the thought that walking might be less painful appeals a great deal, because at the present it’s a major ordeal.
My problem is getting Flexiseq. It was available here a couple of years ago but no longer. Buying from the dreaded A is ok, except the shipping for a tiny 4 packet is the same as the price of the product. It’s just not feasible - ends up at over $NZ60 per tube. I’m sure if it were a book - same dimensions and weight- the shipping cost would be a good deal less.
Does anyone know a more affordable supplier?
Agree -The cost of sending any medical related item via A is horrendous. Although I’m in UK - I can send some things to my daughter in NZ at a reasonable cost, it shoots up if it is supplements etc…
As for flexiseq itself, I found it didn’t work on my severely affected knee (bone on bone). On my shoulder it is working. It does help as long as there is enough synovial fluid around the cartilage in the joint -that’s what it works on.
Sorry can’t help help on another supplier -but might be worth trying CBD (non THC) ointment or green-lipped mussel ointment (but guess you’ve probably tried that as you’re in NZ).
Thanks for the suggestions DL. I’d love to find CBD OIL. Must have a look. Things are rather backward here regarding such products . As for green lipped mussels, well, we just eat them! I’ll look for the ointment.
🤣😂 this is Uk site for GM -but sure you have local supplier -pernaton.co.uk/
This is CBD ointment I’ve used -but UK site is temporarily offline - they do have US site though so might be worth searching -
sensiwellness.co.uk/sensi-c...
Thanks! I can think of a whole lot of uses for CBD ointment. I’ll see what I can find.
Have you looked at the manufacturer's website - what are their shipping charges?
Don’t think they supply direct -either A or local pharmacies in UK anyway….Boots, Lloyds pharmacies, Superdrug
Their website links only to A. That mega-collosal company has everything sewn up I’m afraid. I’m still working through the independent pharmacies. Thanks for the ideas though.
They used to, right at the start. I can't work out if they ship free here - usually says ...
I think Europe is still okay -and sometimes it depends more on individual supplier - if it has to come direct from them rather than A warehouse.
I have A Prime which covers 99% of postal costs, but not always far flung NZ !
Interesting to read. I have just done exactly the same as you. DSNS reduction over many months from 5mg to 4.5mg then another DSNS to 4mg. Been at 4mg for a month so this week on Wednesday I tried 1 day at 3.5mg . Generally achey feelings the next day and felt more tired. Back on 4mg since then and still rather achey but I have been able to eliminate that mostly with 1 paracetamol. So I dipped my toe in the water and have now stepped out again! Think I will stay at 4mg for longer having read the replies you had. Sooner or later I will have to do it again and perhaps accept some steroid withdrawal but sorting out what is acceptable and what is not is the biggest conundrum! Good luck with it all
Thank you and yes..the conundrum and the awful feeling that the ' bucket ' might be filling up again made me look to our wonderful forum for what to do..glad that you are also reassured from my post and responses..good luck with the next stage whenever that might be!
Definitely agree about extra when grand parenting duties. But as far as aching after a reduction. I have found that if I can see the aching off with paracetamol for a couple of weeks it subsides, allowing me to envisage a further reduction after another four weeks.
I am about to start .5mg. every other day as I don’t feel I need it now🤞🤞🤞. Not to say I’m not aching at all but as irregular pain killers do the job I think it’s more to do with weak muscles caused by pmr in the past. I’ll report in later as I might be eating my words. 😂
Hi Louisnhoe,
Regarding osteoarthritis, I have it in both of my knees, sporting injuries about 40 years ago. I have had knee wash outs over the years.
For information purposes:
I have been taking Chondromax supplements ( Healthspan co.uk) for about 10 years now, and it has greatly helped with my mobility.
Best wishes.
Thank you for this..something else to have up my sleeve..
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