Newly diagnosed

There was a dirty mark on my husband's office door that I've been walking past for months thinking 'I'm too tired to deal with that now'. But I just found myself cleaning it off and wondering, 'Hey - might this be the first sign that the prednisone is working?'

That's step one....hopefully the pred will make you feel well

enough to at least think about cleaning the next spot you see.

I just had cataract surgery on both eyes and you would not believe

the dirt and dust I didn't see.   WHEW.....major cleaning to do.....

Good sign.  But please don't overdo it!  We almost all feel so fantastic and energetic on pred after the months of undiagnosed pain that we think we can take on the world.  No we can't.  Clean the office door, and maybe one other small job.  Then take a break. This will be your new normal, where making sure to get enough rest will be just as important as getting enough of the right kind of exercise and eating healthily.  

Yes, I wish I'd known that myself way back last year!

Anhaga has said it - don't get carried away with "catching up" or you may think you are having a flare! And faye - same to you! Dust is very patient - it will always wait 

And welcome from me too - I've been on holiday with littel internet access!

Thank you so much for this Maid Mariane. I found your story so helpful. Of course everyone's experiences are different, but I've found every personal story shared here so helpful. When you're wondering how you're going to cope, getting the wisdom and personal insights of people who have gone through it really helps.

You say you had to give up work - I have been struggling with various voluntary posts while trying to complete a postgraduate thesis - I am trying to pace myself but it is slow . I have left a full time job and hoped I would be ok with the writing but it is not easy when also juggling family issues - I keep trying though! I am trying to be realistic and also positive - keeping fingers crossed!

Hi Louisa

I was teaching and editing masters and Phd students and sitting with them one after the other daily and editing their works. I now know all my back problems was the start of PMR and my boss was a #### about allowing me to leave 1 hr. early to see my chiropractor although get in sh*t for not taking my lunches or breaks.

I now fight for sentence structure, words etc. Some days worse than others. It took me 4 weeks plus to write a 19pg. report that i would normally whip off easily in a morning. My spelling is now so bad even spell check doesn't know what i want lol. I have to laugh but at the same time i say my brain is a combination of early onset alhzimers, intellectually challanged and brain injured.

I can honestly say this with confidence since i have worked as a social worker with all 3 groups. My rumi shrugs it off, she is only good at pain control and reduction but my GP is awesome.

I also get waves of exhaustion that i just need to rest, sometimes an hour sometimes more as well as I'm no longer the morning person i was. So who wants to hire someone who may or may not show up on time let alone may have to leave early due to an onset of exhaustion let alone the brain fog.

I have an alarm on my watch to tell me to take my afternoon dose of prednisone and if doing something i will forget like today untill all of a sudden I'm wondering why I'm in more pain.

I have alot of the prednisone side effects in just under 1 year alot of them dealing with brain fog and mood but i really keep those in check by swimming which is my muse as well as it has increased my mobility greatly.

Sorry for rambling but i just don't know how people can work and my hat goes off to you so please keep me posted on how your doing.

We are all different but yet similar, i on the one hand can only reduce by 0.5mg at a time and as of this week just reduced to 16.5mg were many are close to 10mg.

Hope my story helps

Mariane

Thank you kitsalley. I've been moved by many of the stories I've read here where people have been facing up to huge obstacles and not giving in. I think I have probably been diagnosed quite early and while I've found the aches and fatigue very debilitating, I've learnt they are so minimal compared to the suffering others have had to endure. Fighting for joy in your life sounds like excellent advice.

I use to have pain every morning until the prednisone to effect between 1-2hours now I'm stiff slow and wobbly.

I split my dosage but it's almost a yr this September and now at 16.5mg. My body will not let me reduce like some of you and this is over 8 week reduction method.

PMR effects us all differently but yet we all have common denominators. Count youself blessed but be very careful under 10mg when reducing. Rule of thumb stabalize at 10mg between6-12months before starting to reduce and most at 0.5 mg at a time.

Mariane

Have to say I completely ignored that rule of thumb.  In fact I didn't know there was such a rule.  I'm glad, because in 13 months I've reduced from starting dose of 15 to 3.5 tapering to 3.  We are all different.  I bet there are also many different causes for PMR which would go some way to explaining why our recoveries seem so idiosyncratic!

Karen, if your journey turns out to be anything like mine, you may experience returning pain at lower doses, which is either pmr symptoms or pred withdrawal.  It only means your taper needs to slow down.  I am not completely pain free, but most of my adult life I've had some sort of ache or pain (headaches, osteoarthritis, back problems....) and what I experience now is just a continuation of that, which had also been wiped out for a couple of months by pred.  I enjoyed those weeks.  However I have none of the debilitating stiffness which PMR caused, and except for tiredness and muscle weakness I am not limited in any way by PMR symptoms.  As long as that situation continues I shall be happy to continue my taper.

Mariane

I have never been without symptons even on my original does of pred at 20 mg.  I am now at 7 1/2 and just started another reduction today to 6.  I think my doctor thinks pred is worse than the PMR sufferings.  I think the thinking is that pred is so bad that one shouldn't stay on it more than a year.  I'm coming up on a year this fall.  Also, for me it's hard to tell the difference between arthritis issues in back and hips and the PMR altough I"m inclined to feel that most of my pain, wobbling, and stiffness is due to the PMR.  I am frustrated at not being able to differentiate in order to make sure treatment is targeted to right cause.

why can't  we just be on pain pills since steroiods are so bad for us.  What do steroids do for PMR?  I do not like this steroid stuff either.

Hi Karen, unfortunately steroids are the ONLY drug that treat the symptoms of PMR. Nobody knows why.  I'm just grateful that something works - imagine having to live with untreated PMR!

I think the steroids are meant to reduce the inflamation . . .but along the way, wreck so many other systems.  And some apparently have bad side effects like weight gain, slepplessness, paranoia, etc.  I've been OK with no real problems but worry about long time bone loss or impact on organs.  

Hi Karen,  It's interesting to hear that you have had no pain since starting prednisone.  I was practically crippled end of Ocvober 2015, my MD made a quick dx and once I started on the prednisone, which kicked in right away, I have had no pain.  I am now down to 4mg. tapering slowly, with no apparent side effects.  Once in a while I'll feel just a little achy in my muscles, but in that departmend it's been smooth sailing.  We are the lucky ones!  My skin, hair, energy, brain, balance have suffered.  My memory isn't quite as good, hoping it will improve. does anyone on this forum think memory (& brain!) improves as pred is really low or discontinued?  Everiyone, including my husband, says I look great, but don't understand the unseen problems! Any comments?

And Vicki, I'm wishing you a smooth journey!               Elinor

Thank you so much Elinor. So glad your aches have been under control. So far I'm delighted to report it's been very smooth for me - I'm only four days into prednisone, but my aches have gone - wow! 

I think I might be in a euphoria stage with little twinges of denial now and then.

Hi Vicki,  I was very euphoric when I started on higher doses of pred. in the beginning.  I was looking at the world through rose colored glasses, everyithing was great, nothing bothered me.  It was wonderful.  My MD must have noticed some euphoria and said that it wouldn't last.  I thoght that's what he thinks!  Presto! As my pred. was tapered down, I was NO longer euphoric, and how I missed it!  Now I'm back to "normal" except for the brain fog.  I'm wondering if that ever clears?  I had a wonderful memory, but that has slipped too.

I cried in the beginning since I was in such good health for my age and it did frighten me.  Then I thought of other debilitating diseases, such as Parkinsons which miy mother had, what a horrible debilitating disease.  So we can count our blessings,although not what we wished for.

Keep up your good additude!                      Elinor

Yes, it does come back. The brain fog is also partly to do with the autoimmune disorder that causes the PMR symptoms - I had it during the 5 years I had PMR but wasn't on pred so know it isn't just pred. My memory is back to its normal "worthy of comment from others" level again. I do still find I get finger dyslexia when I'm tired or having a flare - my fingers persistently type letters in the same wrong order  

Hi Eileen,  What a blessing to hear your positive comments on brain fog.  I was wondering if it is age but now I do feel some hope.  THANKS!  You've gone through so much more than I have in regards to PMR and other health issues.  You are a true soldier!!!      Elinor

All drugs have possible side effects and pain killers are particularly bad. They don't effectPMR pain anyway. A friend of mine has just had a severe bleed from a stomach ulcer from taking Ibuprofen!

steroids reduce PMR inflammation, preventing it from running rampant through our bodies, possibly causing other much worse, potentially fatal conditions such as heart conditions, stroke, GCA and cancers.

Steroids are our friend not our enemy, but we have to do what we can to mitigate any possible side effects. 

I don't understand your doctor's thinking. There are lots of conditions that require treatment by long term steroids. At least with PMR we expect it to go into remission eventually. So until that day comes Steroids are essential to lessen the inflammation and allow us a near normal life and to prevent the inflammation causing much more serious damage than the side effects of Prednisolone cause us. That may be anything from 2-5 years if we are lucky.