SED Rate Graph shows ups and downs

Hi Kathy, Wow! It's so hard to comprehend the variance of dosages for prednisone. 80mg seems very high to me, but if that's what it took to get your pmr under control....I'm happy that worked! Be very careful of your tapering down. I went from 16.5mg to 15, and within 2 days I had excruciating pain in my shoulder (literally couldn't move my arm!). However, I also think I may be super sensitive to steroids.

I feel for your side effects as I've had Many of my own. I think we all do!

Please keep us posted...we're all in this together!

80mg would never be used for "just" PMR - it is the dose used to start for many patients with GCA because the inflammation with that puts your vision at risk if it is slowing the blood flow to the optic nerve. So a very high dose - and sometimes even higher than 80mg - is used in attempt to reduce the swelling in the arteries as quickly as possible. 

Hi, Lynda

 Yes, 80mg is extremely large, but I was suffering the dangerous symptoms of GCA. Having a stroke or losing my sight was a very real threat. I was only on that dose for a few days as a “pulse dose”

  Once my temple stopped  throbbing, the dose dropped in half. I was on the 40mg  for ten days, then dropped to 20mg.  Once I was at 15mg, I was stabilized.  Getting down from 15mg has proven to be difficult. I have only one adrenal gland, so when I taper below 15mg, my lone adrenal gland has a very difficult time trying to balance.

 Now I hat I’ve been on the Actemra injection once a week, for a month, I tapered to 7.5mg of prednisone and here I sit in a horrendous flare.  Tomorrow I will go back up to 15mg and wait another month.😔

Thank you Kathy for your Very understandable and sensitive reply to my post. I apologize. It seems I overlooked the fact you had GCA in addition to pmr. That certainly explains the high dosage of prednisone!

I'm also sorry to hear of all the problems you've had with prednisone side effects. Have you noticed any improvement since you started your taper or is it still WAY to early? I'm beginning to think 15mg may be the "magic number" for many people,(myself included), as it seems that's often when symptoms start to return!😢 Best wishes to you and please keep us informed!

I've been on Pred. for years now, up and down.  I keep getting flares that send me up the scale and the dr is now unsure if I really have PMR.  I've taken one test after another, all OK,, except the SED and CRP ones are high.  Who knows.  Days I feel like I may die pretty soon.  Other days I feel almost normal inside.

Could someone explain to me what a normal SED andCRP rate are supposed to be? I keep reading about everyone's rates being high, and it doesn't make sense to me as I don't know what the norm's are. Also, are blood tests and how you react to pred. (along w/your initial complaints) the mainstay in how doc's deduce if you do, indeed indeed have pmr??

To diagnose PMR doctors really have to discount everything else it might be such as rheumatoid arthritis for example. There is not really a straightforward diagnosis, but after discounting other things and the patient has bilateral pain in shoulders and/or hips and has an extremely good reaction to 12.5mg to 25mg of pred fairly quickly, the chances are it is PMR. 

Thank you so much! That helps alot. I actually don't know what my rates were, I was only told they were high. I go in 4 new blood work on Wed. which now I will be sure to ask about. As I've said before, I had an amazingly quick response to pred.--within hours of my 1st dosage! I've been virtually pain free for a few months (except when I started to taper, then got excruciating pain in my shoulder in 2 days! The only thing I'm somewhat confused about is my pain seemed to be mostly in my hands, fingers, wrists, forearms and one shoulder. Any input will be greatly appreciated!

I had a lot of hand and forearm pain - if there is also swelling it may be something called RS3PE syndrome which is often found alongside PMR and also responds to moderate dose pred. But it does vary from person to person. It is normally bilateral but may start in one hip or shoulder considerably before it appears in the other. It isn't unusual for patients to be diagnosed with a frozen shoulder when it is really PMR.

You put it very succinctly.  I think I'll print out your message to show her.  No, she still doesn't believe it is PMR.  Her reasons are: I've had it too long; my SED rate doesn't go down far enough with 20mg; and my ankles are swollen, meaning what, I don't know.  The swelling went down a bit with the increase in Pred this past month.  Anyway, she hates for me to be on pred.  I've had two fractures in my back, which she associates with the pred.  Plus I've gained way way too much weight, 300 pounds.  I don't know what will happen next.

Better doctor - the "too long" is a red herring and she needs to get up-to-date:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Your sed rate isn't going down enough because at 300 lbs it probably isn't enough - the range is 12.5-25mg/day in the latest recommendations and a study found there is a relationship between response and weight. And the overweight also causes inflammation - and may be stopping the sed rate falling.

Maybe she does hate you being on pred, maybe it is the problem with the fractures, or maybe it isn't. but there are ways of dealing with that and leaving you in pain and restricted in movement doesn't help either. It isn't her pain and I would tell her that - if it isn't PMR, then she needs to work out what it is. If you presented with the same symptoms but weighed only 120lbs - what would she diagnose then?

You CAN lose weight while on pred - cutting carbs drastically does work for most people.

Yes, I was wondering the same thing about weight. Is this a 300lb gain or your present weight? If it's a Gain, then in my humble opinion that needs to be addressed asap!