I just got over a very very bad upper risportory and sinus infection, which threw me into the worse flare I've ever had; I've been using a cane and/or walker for last 4 days. My new GP (she has PMR) told me treats hers, with what she calls "steroids brust", jumping dosage up 5 10 or even 20 mg for 3 or 4 days and then dropping back down to regular dosage; AND she never messes with anything under 5mg, after a month or 3 on 5, she stops taking the steroids completely, and resumes them when the PMR starts up again. She says she sometimes is off them for months, and it works for her. We are going to try this method; she will write prescription for 10 & 20 prednizone, as I need them. The rest of the time, I will follow my RAs instructions. Hopefully, I'll be able to get below 20mg, sometime been unable to do.
Wow! Something to think about - but VERY carefully. It will be interesting to hear what our experts think.
Jeanne, please see my answer to your other post on the subject of your GP's approach, particularly to her stopping "taking steroids completely" from the 5mg level and then resuming them again when PMR starts up.
Mrs O - Can you please repeat the message on here? Sorry, I have deleted several posts, including the one you mentioned fr Jeanne.
Constance, it's probably better for you to read the whole thread which you will find on the following link:
https://patient.info/forums/discuss/respiratory-virus-affecting-pmr--512919?page=0#2106767
Hi Jeanne as you see this discussion is bringing many people interested in the subject.
About the kind of steroids and most importantly on the tapering(!!!) which is the source cause of the scary flare ups.
Docs in general do the taperings too fast and the result is a scary flare up immediately after each wrong tapering.
Wish you the best.
Keep safe 😊🍀
How can you delete posts?
I do so very often, and then need to go back to something. Silly me!
There is a delete button at the top of every comment. I usually do it 'en masse' from the 'in text' column.
I must admit I have increased the dose several mg and then reduced back again after a short time, which seems to work. I am not sure I would try the reductions your GP does at 5mg, then stopping completely, she must have pretty impressive adrenal glands. How long has your GP had PMR?
About 2 years, and at age 50, she doesn't want to be on steroids, so she follows that regiment, and it seems to work for her. I doubt I'll ever have to worry about getting down to 5 and stopping. I drop 1mg and I have a flare, this is the 3rd time this has happened and each flare has gotten worse; and this one is a doozy, I upped to 30 from 20 for 4 days now and I hardy have any relief at all, befor I'd feel relief in the 1st day. I'm now just trying for a dosage and method that will relieve the symtoms of PMR, so that I can have some quality of life. I'm almost in a wheelchair, my legs are so stiff and weak and my arms are about the same. I try hard to keep a good outlook on life and a sense of humor, but it is so hard. Thank God for the loving support I get from my wonderful husband and family.
Jeanne I am so sorry for you. If you are not getting relief at 30mg for your PMR do you think you may have something else? Normally 15mg is enough to create a miraculous improvement. Have you been tested for vit D deficiency and rheumatoid arthritis for example? You may even have PMR and something else of course. What are your blood markers like?
You must have more power than I do, I have no delete button, and what is the "in text" column? I'd love to be able to delete comments from time to time, especially as I can't edit my comments and I hate leaving typos in public domain!
Maybe I should try a different browser? Can you PM me which browser you use?
I'm not very good at explaining things on the computer - being 76 doesn't help.😏
What I meant was the 'mail' box. I go to that, see the list of incoming mails and delete those I've read.
To delete your own messages isn't so easy - that's why we often have silly mistakes caused by the predictive texts.
Someone else will no doubt be able to help you more.
I could put my inability to explain well down to 'brain fog', but I fear that would be an excuse.☺️
I use Safari and I don't have a delete facility I can find.
No it definitely is PMR but with my other health issuesb it is really hard to control .. I'm now taking 25mg of roids and I can feel my lungs starting to fill up already .. more than likely I will have to go on a 40mg 4 day taper to get things back under control ..
Ok, you must be saying we can delete our private messages. I misunderstood, thought you meant we could delete our posts. My bad. As you were.....
Take good care of you.
Keep safe and as we all are doing based on our unfortunate experiences be careful with the tapering the doc recommends - too quick in general.
Take care.
🍀😊
I think it's very interesting how a "burst" dosage might be particularly effective at reigning in a flare. There is so much that we don't know about the disease mechanism and how exactly that the prednisone interacts with all the body tissues. And let's face it, the body, and in particular it's individual cells, are incredibly complex.
One odd thing that I've noticed about how dosage is administered is that when I've skipped a single dose, I then have an exaggerated response to the same dose of pred the following day. It's a sort of warm feeling that I didn't normally get from a daily dose, and it was almost annoying. For those who don't know, I've used skipped doses as a way to transition to a lower dose, first by skipping the occasional day and then a big reduction in daily dose from say 5mg to 3.5mg. But I often have to adjust to a slightly higher dose for a time, like back up to 4mg/day for a while until my symptoms stabilize at the new dosage level.
Presumably you can delete your private/or open messages you feel are inappropriate by tapping 'Report' and asking the moderator to delete your post!?!