diagnosed in March2017

Thanks Michdonn,  will try your advice about the smile on my face, but some days it is difficult.   i find walking difficult, but I do have a three wheeled bike, and enjoy getting out on it.

Yes carolann34577, we are traveling a bumpy road, some days it is much more difficult to have a smile, but I think it does help. Hang in there and get the PMR pain under control then move on from there! Good luck. 🙂

Hi Maria, my GP said 15mg - 25mg initially. I found 20mg did the trick, and kept it at that for five weeks. I am now tapering using the dead slow method as steroid withdrawal pain is like Polymyalgia. You can read about the method on the home page. It seems to work. Managing pain is the challenge, giving our systems a chance to sort themselves out then reducing the dosage to cope with side effects. It all takes time! You already know more than your GP - this Forum is on your side. 

You are right about having to perhaps manage the doseage yourself Maria.   And the forum is helpful, just to know you are not alone.   I have had health problems in the past but it was always surgery, ie new knees, and 8 weeks later all is well.  I am not liking this as it is taking too long to feel better.   Good luck to you as well, and hope you get pain relief soon.l

Why do they decrease it so quickly maria.?  You would think they would be aware of the problems so many have doing that and so do it more gradually.   I have gone back to 20 daily until I see my rheumatologist on the 29th.   In two days it has made such an improvement in how I feel.   Eilleen sent me a link on how to decrease slowly and I will talk with him about it.  Do you have that link?   Good luck to you as well.

carolann35477, the doctors have never felt the pain of PMR, if they did they would believe in DSNS method of tapering in the smallest amount possible. Good luck on your journey.

Thanks Carole, yes Eileen sent me link for slowly reducing.  A question?  while preds working on the inflammation should I take something like panado to help with the pain.  Especially in the morning?

If a painkiller works on such pain it is unlikely it is due to PMR - or at least that is the experience most of us have. Even opiods won't touch PMR pain.

Some people wake early, take their pred and settle down for another couple of hours by which time it should be working. Others take their pred, or some of it before bed so it is working by early morning - the antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. For some people the effect of the right dose lasts 24 hours but not for others and some people split their dose to get a better result. That isn't recommended for GCA though.

thanks Celia,   I think I am going to do exactly that, go back to 15mg, hope that stabilizes the pain and then go from there.   I am taking Calcium and a multivitamin daily.    Enjoy your little grandson,  they certainly are a blessing.

Quick question, Eileen - what are 'normal levels' of ESR and CRP please?  I had mine tested recently as have been going downhill for a couple of months and wanted to check my bloods.  My CRP has been 12 for a while (in keeping with pain levels!) and my doc said they were 'normal' and to remain at my current dose of pred.  I decided (and probably later than I should have done) to go up a couple of mg.  Now at 13mg - probably need 15 to be honest and struggling daily.  I don't know why we resist pred so much - but I was so hoping to be going down on the DSNS method by now, not increasing!! Sorry to hijack your thread, Carol Ann x thank you 

ESR should be under 20, CRP depends on your lab and the units and whether it is "ordinary" or high sensitivity testing.

It isn't the tests taht are significant - it is the SYMPTOMS!!! In some people the ESR/CRP don't rise again wen they are taking pred - don't know why, just is so.

Thanks for your reply Eileen.  I was wondering if the on off again routine by my GP had any negative effect.  When I first started on Prednisone it was like a miracle,  then off and within a few days back where i had started.   It seemed that the more times I went back on the longer it took to feel better.   

Up until yesterday the fatigue has been more disabling than the pain.   However yesterday and today the pain in my arms, shoulders and neck has been very bad 8 !/2 out of 10.   ON Monday I had gone from 14 alternating with 13 3/4 prednisone to 13 3/4 daily.   Who would think that a 1/4 mg. daily decrease would cause such a difference.   I feeel like I have been hit by a truck.  It is very difficult to get off the couch up from lying down, and doing any housework is totaly out of the question.  I ffelt much better on the 20 mg dose but am feeling that I cannot stay on that forever and have to work at decresing it despite the problems,  but perhaps I should just go back to the higher dose so that I can have some of my life back.   I do not mind having to have a rest in the afternoon if I can function inthe morning.  

I do not know the numbers for the ESR and CRP.  All I was told was that there was some elevation of the inflammatory markers.   To be honest then and right now I am experiencing the brain fog thing and feel like I just do not care and cannot keep up with it all.

Looking back my first symptom was arm pain in my right upper arm.   It was really bad at times, kept me awake,  the Dr. really had no idea what it was and sent me for physio.   They did acupuncture and it did help.   The other main symptoms were extreme fatique and weakness in my thigh and arm muscles.  walking is difficult.   from Nov. 16 to March 2017 I spent most of my time sleeping and lying on the couch.  In between I would be at the Dr. asking for Prednisone again and finely in Feb. after being seen by an endocrinologist who called to tell me that bloodwork she had ordered showed an elevation of an inflammatory marker and she would recommend that I see a reumatologist.

I do not see him again until the 29 of August.   

I am going to speak with him about Actemra as I have been reading about it just recently.   Seriously like everyone else I just want this to go away quickly.  at 70 you just do not know how many good years you have left, and I would like to be able to be up and around a bit and enjoying them now if I can.

"When I first started on Prednisone it was like a miracle,  then off and within a few days back where i had started.   It seemed that the more times I went back on the longer it took to feel better."

Exactly - a lot of people find that. And you were displaying typical PMR responses: responds to moderate doses of pred, symptoms return in a similar time frame when you stop it.

What is more likely now is that you were only just holding things before you cut that 1/4mg - and now the inflammation simmering under the surface is enough to cause symptoms. Have you said how long you were on 20mg? At a guess, because of the way your GP has messed about, you didn't start now on a high enough dose to really clear out the inflammation and until you do that you can't reduce significantly.

It's like a dripping tap into a bucket - if the bucket is almost full it isn't much use taking out a cup-full of water a day to stop it overflowing if the tap is dripping 2 cups worth a day into it. 

I really would counsel trying pred used properly by a rheumy FIRST. Actemra is sweeties either and just jumping in at the deep end may not be a good idea.

Hi Eileen    

I was only on the 20 mg for 3 weeks then down to 15.   from what you are saying I am wondering if I should just go back to 20 again.   The last time I saw my rhematologist he indicated that I could work with the doseage according to how I was feeling.  However when I see the higher doses some people have started  on I wonder if I do not need to take more than 20 for a couple of weeks to get the inflammation under control.  I will see the rheumatologist on the 29th.  Would prefer to increase it now instead of waiting two more weeks.   Any thoughts!

 

How did you feel at the end of the 3 weeks? I think it is probably a combination of not long enough on 20mg and too big a drop all at once. I'd try 20mg for a week or so - so you have a comparison for the rheumatologist and if it helps then ask to stay there until you feel well and then try reducing much more slowly.

We talk a lot about "Dead Slow and Nearly Stop" and it has been used in a clinical study in the north of England. There are a few versions, some slower than others, and many people adapt them to suit themselves. Most people find that slow reduction means they have less discomfort because of steroid withdrawal and don't overshoot the dose they are looking for - the lowest dose that manages the symptoms as well as the starting dose did. It is likey to be higher at the start than it will be later but everyone is different.

Darn - forgot the link:

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

Thanks Eileen,  today is my second day on 20 of Prednisone.   The difference is amazing.  The pain is gone,  the weakness is gone and I am not feeling as exhausted.    I still tire easily but really think that is related to being out of shape and conditioning because I have been laid up for so long.   I am going to stay on the 20 until I see my rheumatologist.on the 29th.   Thanks for the link.

Then slow and little bit at a time! Good luck, think positive on your journey with a smile on your face! 🙂

The pred doesn't help significantly with the fatigue - it manages the symptoms, not the disease process. That goes on in the background despite the pred and that is what causes the fatigue - you have to do your bit with pacing to manage that. 

https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

Also google "the spoon theory by Christina Miseriando" and "gorilla in the house by batsgirl" for allegories about living with the fatigue of chronic illness.  And also google an article called "13 types of Sjogren's fatigue" - not just for Sjogrens, the fatigues it describes are familiar to anyone with any autoimmune disorder.