New patient, seeking answers

I too have terrible fatigue, not sleep deprived tiredness, but low energy, fatigued, although 75% of all pain is gone. Drs. weaning down on 15mg. now, hoping down to 10mg. or lower, reducing by 1mg. per week.

Yeah, I don't know why this tiredness suddenly kicked in

I feel normal in the afternoon/evening. It's just getting thru the morning that's tough.  I think it will be a long time before I am to the dose you are on.  Someone suggested I take my dose earlier, like 4am, and I'm going to try that.  I usually wake up about then and then go back to sleep for another hour or two.

Thanks Erika.  I'm going to try taking the dose even earlier in the morning.  If that doesn't work, I'll try splitting it.

Hi Donna, I have noticed in this short time that some days are worse than others and I can't figure out why.  I just know that most days it takes about 3 hours before my legs stop hurting enough for me to move around.  

Donna, I too am in the US and have had trouble finding PMR patients to discuss problems with.  Have been very discouraged at times.  Diagnosed one year ago with classic symptons in arms, shoulders and neck.  I can now move my arms normally but it seems to have settled in my hip girdle so that at times I cannot walk the pain is so severe.  I have found exercising in the pool and swimming laps to help.  Presnisone has been at 7 1/2 mg for several months and I have now seen a rheumatologist (switched from internist) to see if I can get more specialized help.  Seems like UK is more up on this than USA!

 

Hi Kitsalley, When I first found out about PMR, I looked it up and found that most afflicted are females over the age of 60 who are of N. European extraction.  My roots are primarily of the British Isles with one grandparent from Sweden.  I am thinking that perhaps this is why there are so many on here from the UK.  I think it is more prevalent there due to their populationg. Anyway, I have not found much support here either.  I am going to look into the possiblity of pool activites and Tai Chi, that sounds promising.  I do not have the hip pain.  Mine began in my thighs, upper arms and shoulders.  Now I have a lot of pain in both of my wrists in the morning.  My arms are soemtimes a tad sore, nothing like they were in the beginning.  My legs are fine.  I do have restless leg syndrome, but I have had that for forty years.  Not sure if others have that too or not.  I also have a tear in the rotator cuff of my left shoulder.  A cortisone shot a month ago took that pain away.  I know that this may come back, I am sure that it will.  I am trying to avoid surgery.  I had a bad fall where I landed on all fours.  That was when it all began.  I really jerked the muscles in my back.  They were sore for a week or so, then the pain began in the legs and shoulders.  My rheumatologist said that this could have caused the PMR.  I am sitll on my dose of 20 mg and taking Methotrexate once a week.  I will take my second dose of that tomorrow.  I am supposed to reduce the prednisone beginning next week to 15.  If I am still having wrist pain in the morning, I think I will wait until I see my doctor on the first week of August.  I am so sorry to hear of your hip pain.  That has got to be awful.  I am very grateful that nothing in my lower body aches now, just some pain in the arms, mostly the wrists for a few hours each morning.  I hope you will be feeling bettetr.  Donna

 I'm also in the US, and am so pleased to find this group.  I haven't been able to go to the gym for several months but exercising in the pool sounds like a good idea.  The gym I belong to has pool classes for people with arthritis.  I might be able to do that.

I am 75 and  of Irish descent on one side, German on the other.  Interesting.

I need to quicly correct what I wrote.  I do not know why I said I had not found help here on this site as I have.  What I meant is that those in the UK have a much better grasp of PMR.  I find that I am floundering as I know that our system of medicine is different and our insurance plans dictate what the doctors can do. I hope that anyone who saw that I said it wasn't helpful see this.  :-)  Donna

I am what I consider to be a very young 79.  I have always been very active. I was walking nearly five miles a day.  Thanks to my Fitbit I just kept going.  I have had to slow down sadly and my Fitbit is showing that.  I would be interested in the ethnicity of others since finding this out.  I have seen a couple of males on here, that's all.  I do know of a couple of women who are much younger.  My own children have some Hispanic in them, so I am hopong that they will be protected.  LOL  Have a good evening.  Donna

Wilma, which part of the US do you live?

I am English/ Irish and according to the genetic test for HLA - Dr- DQ I was susceptible to it and my dad had it too.  Hope this helps.

Yes, you are right!  I feel like I am the ONLY PMR sufferer in the state of Washington.  This website has been of such help!

I do have a friend in N. California who has PMR.  I am in S. California.  We were diagnosed at about the same time.  Her doctor is dropping her prednisnone very quickly.  She is down to 10 mg in just a month from 20.  This morning she had pain again in one hand.  I will hear from her tomorrow and see if she has more.  I hope not, but from what I am reading I think she may be beginning to have flareups.  I love Washington, but think I could not handle the darkness in the winter.  It is a beautiful state though.

I live in a suburb of Kansas City on the Kansas side

Found it interesting re Patients over 60 having European heritage etc with PMR.  I read an article which stated the same possibility.  I am in Australia and my Heritage was a gg Grandfather going to Ireland from Europe, then coming out to Oz in the 1800's.  My DNA states, 100% European.  Also I read another article of a Town in USA which is has mostly Scandinavian people living there,  (sorry I cannot remember the town's name), and they all suffer from PMR, even the younger ones who are being born in this town all end up suffering from PMR when they become older.  I found this very interesting.

So maybe some of us can blame our heritage and descendents .

And I'm in SC, Columbia and often at our moutain cabin where it's a bit cooler!

I used to live in San Clemente and the Central Coast in San Luis Obispo.  I LOVE California.  I moved to the rainy Pacific Northwest because of family in Vancouver, Washington.  There was a grandbaby to take care of which I have enjoyed very much.  

 

Come on Erika you love the rain really!!   If you don't think you get enough rain try England!!  Drive to the other side of the Cascades it usually dryer there!

Regards, John

Oh, my that is very interesting about the town of Scandanavians.  I am wondering if it is in Minnesota.  I do not know of anyone else in my family who has suffered from this, however, I have made it to a very healthy otherwise age of 79.  I have only had one great grandparent who made it to an older age.  All of my family, sadly, did not make it much past 70, so would be hard for me to tell on that score.  Oh, I did have one aunt who lived to be 90.  She may have had PMR, I just don't know.  My heretiage is mostly Scottish and Irish, with the one grandmother from Sweden.  I have not done the DNA, I have been tempted to do so.  Have a very nice day, Donna

I love San Clemente.  I was born in Orange, so I am sure you know where that is.  I spent a lot of time at Corona del Mar as a kid.  Living near Palm Springs now which is hot hot hot.  LOL  I would love to be in Vancouver, WA right now.  I have been through there on the way to Seattle.  It is very pretty. I would prefer it in the summer as I do not do well in the dreary winter.  Hope you are feeling well today.  Donna

Yes, it is cooler here..... sunny today, and I have a beautiful view of the Columbia River.

I am on 7 mg of prednisone.....still have some lower back pain, but I do not want to increase prednisone.  I have been on it for too long.  My RA doctor tells me to reduce by 0.5 mg a month.  She is good.

She told me to take Tylenol when in pain, which I did this morning.

I feel alright until late afternoon, but then I sit a bit more.....and then nothings hurts. :-)

I like the cooler weather, but do not like the rain!!!

Well done if you are down to 7 - wow single figures!  

I'm on the slow downward reduction, taking it very steady have just got down to 2 from 2.5 over a month.  You know my motto - 'the tortoise and the hare, tortoise is the way to go'

Have booked to go on vacation in a weeks time so am sticking at 2 for a while, glad I booked some time back as the good old British pound has fallen a bit since Thursdays vote to leave the EU.  Say no more it's very political here at the moment, people resigning from both the government and the opposition parties - a right mess!!

I am eager to talk to my rheumatologist, but that is not until ealry August.  I am on 20 mg.  My wrists  are just horrible at times, today is one of htem.  I probalby should not be at the keyboard now.  I am using a carpal tunnel mouse pad and that helps a bit.  I am suppoed to start reducing by 5 mg. I am not going to do thas since the pain is so bad in the morning.  I used to be a morning person and now I can't get much done until noon.  Since I live in a hot climate, that just doesn't help much as I am less interested in doing things when it is hot.  Well, I do have AC, but try to conserve energy when I can.  Your view sounds amaing.  :-)  Donna

Indeed it is a real mess!  Not sure if the result was welcomed by all!

Sure is a mess, but so nice to be able to communcate with others who also suffer from thsi.