Are flares as debilitating as PMR original presentation
Posted , 15 users are following.
Ive been on my initial dose of 20mg prednisone for a few weeks and feel great. Pain is gone and have begun daily walks. My next visit to GP is in 3 weeks and I expect to be told to reduce to 15mg or 10mg at that time.
I've been reading a lot about the slow prednisone taper method (DSNS ?) and it seems the best way to reduce dosage while still getting enough prednisone to keep PMR in check. 20mg to 15mg reduction will be greater than 10% reduction and although 15mg is still a large dose there is a possibility of a flare.
How will I know if I am having a flare Do flares appear suddenly and knock you back into the excruciating pain and inability to move or are they more gradual? will it be obvious to me when I have a flare?
Thanks in advance for any responses.
0 likes, 48 replies
EileenH OregonHazel
Posted
They would be likely to be like that if your doctor tells you to reduce from 20 to 15 in one fell swoop - and even worse to 10mg! 10% at a time is plenty - 20 to 17.5 to 15 usually works though.
Using the DSNS approach you shouldn't have a problem PROVIDING you are honest about any suspicions you have about returning symptoms. Ones which appear immediately you change the dose are usually a reaction to the lower dose, called steroid withdrawal and they usually improve over the following few days. Signs the new dose is too low take a bit longer, unless the drop was very big, and then get worse day by day. The DSNS makes it more obvious we think - you might feel strange the day you take the lower dose but after a few attempts and going back to the old dose most people find their body stops complaining and accepts the new dose.
celia14153 OregonHazel
Posted
I definitely didn't drop to 15mgs - used the mid slow taper ten per cent at the time. Diagnosed June 2017, and just down to 10mgs. We're all different but I reckon it 's good to be conservative to start with. You are feeling good because of the steroids but the inflammation is chugging along in the background!
bob73443 OregonHazel
Posted
OregonHazel,
I have had 2 or 3 flares prior to my most recent BIG one a few weeks ago. The smaller flares are noticeable, resembling the original pain but not anywhere near it. On a scale of 0 to 10 (10 high), my smaller flares have about a 5 or so when I'd normally be living with a 2.
My most recent flare, however, was a 9. It was BADDDDD. No doubt about it. A direct result of an injury combined with much too much exercise. I pushed my body over the edge.
But I was very fortunate to be able to bring it back down to a reasonable level within a few days by increasing my dosage from 1.5 mg to 5.0 mg.
Hope that helps.
Flutterbie57 bob73443
Posted
Good one Bob.
I went from 5 back to 6 and all my new pain just dissolved away with 24 hours (against Doctors orders tho).
Michdonn OregonHazel
Posted
Oregonhazel, l followed my Rheumy advice right into a flare that put me into a wheelchair. My Rheumy here in NM does not believe in DSNS, but I do and follow the protocol religiously, with never more than 10% reduction. A flare is caused by inflammation building up in the body, if the buildup is quick hard flare, if the buildup is gradual less severe flare, I have had both . Good luck try and take it slowly and you will probably have less bumps on your PMR journey. Stay active, positive with a smile. 🙂
OregonHazel
Posted
So with DSNS method I will be able to identify the beginnings of a flare and then I respond by asking for immediate increase to my last dose?
Maybe I should print out the details of DSNS method and try to persuade to follow this plan. Or maybe my GP is already familiar with DSNS and I am worried for nothing 😃
thanks all for your patience with me, I may be a bit slow to process the complexities of PMR but I will catch on eventually
EileenH OregonHazel
Posted
It is very unlikely your GP is familiar with it - it is a patient-developed approach and while there are a few rheumies and GPs who understand the concept of such apparently slow reduction (it isn;t slow when it works!).
No, not so much ask for an immediate increase as stop reducing and go back to the beginning of that reduction step.
Flutterbie57 OregonHazel
Posted
Hazel I think you should take the DSNS method and show the Doctor now. You should find out in the beginning, what the Doctors thoughts are on the subject , before you go any further.
Sadly I still have not figured out the beginnings of a flare as every time it seems to be different.(4 years now). My first Doctor let me fumble along on my own, to do what was best for me. Fortunately I found this site, but then a new Doctor came into the practice. That one was hell bent on getting me off the" poison". I was in so much pain again 2 weeks ago, life was not worth living, so I went back to Eileen and company on here. I did what they suggested and within 24 hours all my new pain dissolved. I am changing Doctors at the moment, but I have been really stressed and depressed for the last couple of weeks as I was treated like a drug addict !
Find out now how your Doctor feels. Are they willing to listen and discuss others thoughts on PMR .
I do hope you have a smooth ride and all goes well for you.
Michdonn OregonHazel
Posted
Oregonhazel, think of a flare as a bump on the PMR journey. Most of us are going to have a few bump even on a well manage journey. DSNS protocol well and does reduce the number of bumps. If you start to have a flare increase your dosage quickly to get ahead of the inflammation, I think of managing my PMR as controlling the inflammation. Just making adjustments along the journey. Good luck, try to stay active, positive with a smile. It helps. 🙂
patsy59716 OregonHazel
Posted
I started on 10mg September 2018, tried twice to reduce to 9mg , but each time shoulder and back pain returned after a few days, went back up to 10mg until I changed my rheumy early part of this year. He gave me a booster shot (the beginning low dosage of 10mg was never quite enough). After that I was able to reduce by 0.5 increments to 8.5mg, about to reduce to 8mg this week. So, yes, for me the dead slow method is beginning to work, and I am completely pain free so far (she touches wood....)
Senormacho OregonHazel
Posted
Speaking to the subject of reduction of pred dose......I have been taking Actemra injections on the advice of my rheumy for 6 weeks or so.. He advised me to reduce from 15 mg to 10 mg of pred, which I have done about 5 days ago. I have had some discomfort but my thinking was if I could just suffer thru my body would get used to the lower dose, and put me closer to getting off the pred completely. However, I woke up this morning with a very sore, tight knee and have had to walk with a cane all day today, not due to an injury. I almost upped the dose back to 15 mg but decided to tough it out to see if things improve.
EileenH Senormacho
Posted
Not everyone in the GCA study with Actemra was able to get off pred altogether and I also know of a few for whom it was problematic in PMR.
Michdonn OregonHazel
Posted
Oregonhazel, I started on 20 mg and was down to 7 mg when I flared and ended up in a wheelchair, had to increase 30 mg to get relief. My flare was much worse, the inflammation got too far out of control. Now I take tapering slow and easy using DSNS. 🙂
OregonHazel Michdonn
Posted
Thanks, I am taking very seriously the advice from all you all to taper slowly and am trying to learn from the experts here before I actually get my first taper.
I was in wheelchair for a couple of weeks at the beginning of my PMR and will do everything in my control to avoid relapsing to that level of pain.
Michdonn OregonHazel
Posted
Good Oregonhazel, I wish that I had found the forum before my terrible flare I am sure that if I had I would not have been in the condition I was. Good luck, nice and easy does it. 🙂