This is my first post. I was diagnosed with PMR in 2015. I have struggled to reduce my steroid dose had about 5 flares the latest in January 2022 ( when I go to 3mg) went back up to 10mg prednisolone for 8 weeks, then 9mg for 8 weeks I am due to reduce to 8mg now for a further 8 weeks on the advice of rheumatologist but I am worried that I may flare again . I have read about the DSNS and PMR pros tapering plan are these more suited for when you get down to 5mg or would they help to get from 9mg to 8 mg? I would appreciate your views on this. Feeling rather frustrated with this PMR journey at the moment as I am like a yo yo. I started methotrexate in September 2020 to help me to reduce my steroids but wonder whether it is actually helping.
Tapering: This is my first post. I was diagnosed... - PMRGCAuk
Tapering
I have used the DSNS method since 10mg and it has worked very well. Methotrexate seems to work for some and not for others.
Thank you for the feedback I shall give it a try
I chose leflunomide instead of methotrexate as I didn't like the more serious side effects of mtx.
Leflunomide has let me finally reduce below 10 mg which was always a show stopper. I am now at 7 mg and feeling great.
Was diagnosed in October 2018 with PMR.
Side effects for me are dizziness and frequent trips to the bathroom. Both are tollerable and worth it to be able to reduce the pred.
I always try for a .5 mg reduction every month.
Good luck.
After 3 years, I am just entering the single digits and am at 8 mg. I have GCA and have been reducing by 1 mg every six weeks. I have brought the DSNS and Pro's plan into my rheumy before and he thought they were great. This Wednesday I'm going to talk to him about going by a slower taper. Beats a flare and whatever I can do to keep a flare at bay, I'll try. Good luck to you, maybe just slower!💕
I’m a great fan of dsns way of tapering, it’s over 5 weeks with the last week staying at the new dose. This helps to see if you’re comfortable at the new dose before dropping again. I’d recommend reducing by 0.5 rather than 1mgm, the pmr beastie might not notice! You can buy a pill cutter at the pharmacy- your pred needs to be the plain, not enteric coated though. The lower you get, the slower it needs to be.
I agree with others, many posters on here seem to get on very well on DSNS. (Can’t give real experience of my own, still being stuck on 12.5 🙄).
Just wanted to add, if you have tablets in does of 5, 2.5 and 1mg, you don’t need a pill cutter until you get to 1.5…..just one less thing to bother about.
All the best to you 😊xx
Hi Beavy,
I've had PMR for 3yrs now and had a few 'blips' with the tapering. However, I've used the DSNS tapering plan from 10mgs downwards and I'm currently stable at 5mgs.
The advice usually given, is to not drop by more than 10% from each previous dose and because from 10mg down, your adrenals may need to start firing up again, the DSNS method has a much slower and gentler impact on them and therefore more chance of a successful outcome.
As already has been suggested as being useful, I have a supply of 5mg, 2.5mg and 1mg tablets, so no need to 'halve' any at present. They're all gastro-resistant too, so gentler on the digestive system!
Hi Beavy I started with PMR in November 2014. This was joined by GCA later. I find it very difficult to taper and therefore do the DSNS method from about 12 mg onwards. I do only do though 0.5 mg drops and sometimes I do a particular part of the drop twice if I find I’m struggling. I, many times, do not feel great when I’ve completed a taper so I’ll stay put until I feel stable and able to continue. It’s a slow process, certainly for me, but it has meant I can continue very slowly downwards. I am at present on 8.5 mg. Jackie xx💐
The slower plans can be put into action at any level if you are having issues, but most find they can manage above 10mg without them…but not everyone.
As you have had a number of flares, then you will know each one becomes a little more difficult to control….and as stated MTX can be a bit hit and miss…
Couple of links that might help - flares
healthunlocked.com/pmrgcauk...
Tapers -
The slowed tapers can be used at any point - and especially where people sre struggling to do a step down. When I first devised it, adapting someone else's approach for below 5mg, we realised on the forum we were using then that there were people who were struggling to reduce by 1mg even at above 20mg daily dose. This is particularly common amongst patients who have been encouraged or even forced to reduce in larger steps or too fast by their doctors (and sometimes by their own ambition) and ended up getting into a yoyo pattern of dose. You also see it in patients who have reduced quickly for doctors to see symptoms or for tests - if a flare gets set in it can be difficult to get under control and once controlled, reducing is harder. The slower you go about it, whether smaller steps or gradual introduction of the new dose, the easier it is likely to be,
I am in exactly the same position as you Beavy, I also started in 2015 , been on MTX injections now for 15 weeks , it seems at 3mg using the Dead slow reduction method it starts to go pear shaped . I am currently on 3 one day 3.5 the next rotating between them , started getting terrible rib and sternum pain plus my calf muscles completely seize up if I walk more than a few hundred yards , but at 4 Mg nothing at all crazy how such a small reduction amount can cause so much side effects, this has happened 5 or 6 times in the past . I’m staying with it for another 2 weeks then if it doesn’t clear up and level out I’m going to phone the help line at the hospital and ask for adrenal tests which they have refused me in the past . I think there is more to it once we have been trying this long , I also feel generally unwell when I get to this stage tired headaches stomach upsets , classic adrenal symptoms I believe . 🤞 we can sort it out good luck . Keep your chin up 👍
I’m on 7.5mg MTX injections which I’m told is very low , and 5mg folic acid once a week , side effects from it at the moment are minimal .
I would want to know if you have inflammation in your leg arteries - what you describe is called claudication which happens when the blood supply is reduced enough for the oxygen supply to the calf muscles to not be able to keep up with the activity level. Enough pred is reducing the inflammation enough for the blood flow to be OK
that's very interesting, i have blood tests once a month due to being on MTX, which have all been normal up to now, also i have a blood oxygen monitor(type you stick on your finger) which reads 99% , would that confirm my blood oxygen is good throughout my body or just at the hands.
Just your fingers. It obviously isn't too bad in your legs - it is the same problem that diabetics often develop but the vascular team doesn't usually start to treat much until your walking is down to under 100m
Wouldn’t the MTX injections dampen down the inflammation all over the body as you slowly reduce the pred , or is that just in the ideal world , I think that is the plan my Rheumy has , now that he thinks I have Sapho syndrome onboard as well , he said Dmards are a better treatment long term for Sapho , rather then just masking a condition with pred the plan is to slow down its progression , my bones have definitely deteriorated over the last couple of years especially in the clavicles , sternum and upper spine .
That is ideal world I'm afraid. They think it perhaps quietens the immune system down - but it doesn't always in PMR. When it works it seems to work well but in others it makes a bit of difference but not a lot and in others it does nothing. It is a DMARD - Disease Modifying Anti-Rheumatic Drug - and in some things it does change the disease process which reduces the long term damage done in joints for example. That doesn't apply in PMR though.
Bit of a catch 22, the pred at 4mg seems to keep me feeling pretty much normal , of course I still have to be cautious and not overdo it , but my joints where still deteriorating hence the addition of MTX , the thought of being stuck on both drugs long term I have to say depresses me severely .
The pred isn't likely to be the stopping joint deterioration factor though - what happens when you go lower? What dose of NTX are you on?
I'm on 7.5mg injections , i'm told that's the same as 10mg orally, I've never got below 3mg of pred without severe pain, enough to basically stop me functioning. I am close to a constant 3mg this time lowest I have ever got and I'm still teaching my martial art classes, albeit with a small amount of pain, I saw my chiropractor this morning and he said it was classic costiochondritus, after a spine reset it eased the rib and sternum pain , unfortunately this is very common in people with sapho syndrome. At 4 or 5mg of pred it seems to keep it in check or just mask the pain, but now i'm lower i think the inflammation bucket is slowly starting to fill up again.
That is a very low dose of MTX for rheumatology - it is usually at least double that and often 20mg.
I think he has started me on this dose to see what tolerance I have, at the moment apart from a sore mouth a couple of days after and a little more than usual fatigue no side effects and my bloods are all fine at the moment .
Are you also on folic acid?
Yes , 5mg the day after the MTX injection , seems to be doing its job at the moment
If your mouth is sore - more folic acid might help. It can be up to 6x5mg week - some doctors use a lot more than others.
I will mention it to them if I ever get another appointment , told me I would be reviewed after 12 weeks haven’t even had a letter yet and they have just sent me a script with 3 more months of 7.5mg MTX injections .
I can honestly say, i have tried different tapering plans with little joy and always given in and upped my pred every time. This is where the yo yo comes in ! So this time i wrote out Dorset ladies plan and have followed it to the t ! I am now on my 4th week and apart from feeling slightly tired ,i have not once needed to put my pred up. Even though its 0.5 every 4/5 weeks its working for me. For the first time in over 4 years i feel hope that it really is working for me. My problem was i wanted to rush it , it just does not work. So now i go slowly on with fingers crossed i will be as low as i can go one day, may be even off ! Fingers crossed ! Good luck . Viv 🌷
Good luck with this Viv 🤞xx
I was diagnosed in 2016. I flared on my very first reduction. My rheumatologist agreed to DSNS. I made it successfully, with minor occasional bumps in the road, to 4mg. Any attempt to go lower caused problems. I sat at 4mg for an entire year and after that could taper down again. It helped that my rheumatologist wasn’t pushing me. Once below 5mg she essentially said to try and reduce when I felt I could. I do think I developed a “feel” for it after all these years. I’m at 1.5 now, feel a bit rough, and may bump back up to 2mg. My rheumatologist says roughly one-third of her PMR patients stay on a low dose and don’t get to zero.
I was told that by Dr Hughes in surrey, some people stay on a low dose of prednisolone for life. As long as it's not causing any serious adverse effects and your pain free that is manageable. Then Dr Kattack in Birmingham told me something completely different, he said even a low dose will rapidly age you. Feel stuck between a rock and a hard place so to speak.
Beavy it was PMR 2014 for me with many flares in the years between then and now. I follow the DSNS have used a .5 drop at anything below 15 mg.
Once you stop the steroids do you lose the weight that was put on while using the steroids ?
Most people do but it isn't guaranteed - sometimes it melts away slowly without you noticing but sometimes you have to be proactive just as in any weight loss. However - many of us have been able to lose weight while still on pred - you don't have to wait to get off it altogether. Cutting carbs drastically will make a difference for most people even while still taking pred.
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