What is considered a flare?
Posted , 12 users are following.
Hello I'm looking for some feedback on what course of dosage I should consider. I have been on prednisone since early March 2017, I believe I've lived with pmr for several years without a diagnosis.
I was started on 15 mg and immediately felt relief. Was reducing slowly until three months ago and I was stuck on 10 mg, I say stuck because I never felt well enough to reduce further. I decided to reduce to 9 mg a week ago,I had previously tried the dead slow and ended up just going back to 10 mg.
Anyway after a week my symptoms were getting worse so yesterday I just added another 5 mg tablet. ..and again this morning took 14 mg. I have to say I feel so much better.
So my question is do I stay at 14 mg for a while and start reducing slowly again or do I just try a few days and see if it will reduce my inflammation and go back to my 10 mg?
Is it possible because I've lived with this so long that I will need to stay on a higher dose for longer periods of time.
Thanks for any advice, I see my doctor tomorrow. And I am only being treated by my gp as there are no local rheumatologist that accepts my insurance.
1 like, 10 replies
daniel08939 sherri74011
Posted
If the prednisone dose eliminates the pain it is the right dose or higher. I have found that as soon as pain returns you need to go up. Every patient experiences different results when reducing but if your pain returns you reduced too fast. The correct dose for me results in no pmr pain.
Michdonn sherri74011
Posted
sherri74011, each individual is different and each case is different. I am PMR pain free, right now using DSNS tapering from 11 to 10; down from 30 mg. If I feel PMR pain, I do not wait, bump up the dosage, tell the Rheumy after the fact. Stay on the bump dosage till I feel no PMR pain and start my taper again. So far so good. I thinking positive and smiling. 🙂
nick67069 sherri74011
Posted
EileenH sherri74011
Posted
March to November 2017 is not long in the context of PMR. Your body is telling you that it needs at least 10mg FOR THE MOMENT. Possibly a bit more. It doesn't mean you won't get lower - it just means not yet. It took me 4 years to get below 10mg for more than a month or so. I had had PMR for a good 5 years, probably longer, before I was put on pred. Whether that means it is harder to get to a low dose I don't know. What I'm pretty sure is that it is a sign that you are NOT one of the 25% of people where PMR is going to burn out in 2 years!!!
But am I right in thinking that you got from 15mg to 10mg in 4 months? I wonder if maybe you should have stayed at 15mg for a bit longer or even started at a slightly higher dose. Unless all the existing inflammation is cleared out effectively you are always running at a higher baseline and a drop in pred dose might take you back to a level of inflammation that causes symptoms to reappear. I'm not suggesting you go back to 15mg and start again altogether - but it might help to stay at 14mg until you feel as well as possible. Can you remember where you started to feel less well?
Judging by some people's experiences you are as well off with a sensible GP as a rheumy!
sherri74011 EileenH
Posted
Good morning, hello Eileen I was hoping you would reply.
Yes I started on 15 mg and dropped to 13 after 1 month and reduced every month 1 mg after that. 12 to 11 then to 10.
I believe I got stuck on 10 because I was never pain free on that dose, so maybe 11 mg was my comfort zone. It's so hard with this because pain is something that I had learned to live with and sometimes I just struggle along thinking this is normal.
waking up today after only two days of increased prednisone I can really feel the difference so I will continue the 14 mg again today.
I also quit smoking two months ago and that has alleviated my need for my simbicort inhaler which also contains steroids so that may hold a factor as to why I need more prednisone?
EileenH sherri74011
Posted
It wouldn't surprise me - although it is said inhaled steroids don't contribute much systemically they must be absorbed to some extent. The same as with injections for shoulder bursitis - it isn't unusual for patients to have one and realise that other aches and pains have disappeared and get a diagnosis of PMR.
Try to remember how you feel now - and aim for that to be maintained as you reduce,
And very very well done on the smoking
sherri74011 EileenH
Posted
That's exactly how I was originally diagnosed with pmr, I ended up with both my shoulders frozen and was in physical therapy for 6 months. The cortisone injections in my shoulders would make me think I was feeling better overall for about a month and then I would have the full on pmr pain again.
EileenH sherri74011
Posted
sherri74011 EileenH
Posted
Oh yes, the doctors here move slow. Took three months to be diagnosed with frozen shoulders, in the meantime I thought I was dying of multiple myeloma. I was seeing an oncologist and was diagnosed with mgus. Then had to see a rheumatologist out of town who didn't even examine me and sent me away. Next I saw an orthopedist and he diagnosed me with the Frozen shoulders, from there I went on to physical therapy and kept seeing my GP and he's the one who finally figured it out
Michdonn sherri74011
Posted
sherri, since I have been on this forum and read what doctors have said and done I have lost a tremendous amount of respect for the medical profession. Sad State of Affairs.
Good luck on your journey, try to think positive and by God try to smile. SMILING 🙂