blood tests | Arthritis Information

 

Hi all,

I've been reading this forum for some time, but have never posted, mostly because I don't have a diagnosis. That brings me to my question.  Do any of you have normal blood tests and still have PMR?

I have a textbook case of PMR.  Everything seems to be a perfect fit for a diagnosis - except that my blood tests for inflamation are normal and have been from the beginning.  I can't figure out why steroids give me so much relief if I don't have any inflammation.  In fact my first rheumy labeled my situation as "inflammatory arthritis" in spite of the tests.  

My current rheumy won't give me a diagnosis because my tests are normal and I'm "only 53."  I would sure like to know what I have.  It's been nearly debilitating and it gets really frustrating not having a diagnosis.  Fortunately, it does seem to be getting better after about 1 1/2 years.

Thanks!

Eliza

Eliza,

From several sites on PMR that I have read, you CAN have PMR and still have normal blood tests. It's not the norm, but can happen. If you are having all the symptoms, and are getting relief with prednisone, that should be the clincher. A lot of us have had to battle the "you're not old enough" thing with the doctors. I'm glad it is getting better. Are you still taking prednisone?

Reni

Hi Reni.  Thanks so much for replying.

No, I'm not on steroids now.  The new rheumy took me off 7 months ago because he wanted to see what was going on.  As I mentioned, I respond to them really well.  I began to have relief all over from shots in my shoulders by the end of the first day. My neck went from excruciating to okay.  Even when I used my steroid inhaler a lot, it relieved the stiffness in my ankles.

I think I went off too fast though and had a series of autoimmune disasters. I had rashes that looked like the internet pictures of vasculitis on lower arms & legs, excruciating pain behind my eyes and up my face (fortunately that only lasted one weekend).  My eye doc had a fit over that.  He said it could attack my brain. . . well, I did go from being chairman of numerous boards and all A's in my business classes to severe memory loss & confusion. I couldn't even remember what the red/green stoplights meant. I quit school and every responsibility but 8 months later I still cannot tell or feel time and I can't count - numbers just don't compute. At least I can walk again. Now I have restless leg syndrome and my shoulders are starting to flare again.  I never did quit being stiff since being off the steroids - I walk like I'm 100 or more, but the stiffness subsides by the time I get across the house.  That at least is a blessing.

I feel sure PMR is what I’ve got.  When people ask me though, I feel like I’m making it up since a doc won’t say that’s what it is.  I’ve been tested for Lupus and all kinds of other diseases – they all come back negative.

Again, thanks so much for replying – any more info would be greatly appreciated.  I’d love to know of a website where it says people my age with normal blood tests can have PMR.  I’d take copies to my rheumy.

 

Eliza

 

Eliza......

I had full blown PMR when I was 49 with a  sedrate of 50. I wnet on pred and 2years later it was gone. My happiness lasted about 2.5 years .Last july it came back in a milder form but am still very stiff getting up and my neck and top of my head hurts. My sedrate is NORMAL. so...yes you can have pmr with a normal sedrate. The pressure behind the eyes you describe I had for 6 months together with the feeling that my head would explode (this was going on while on the prednisone)

from what you describe it sure sound like you have PMR. Can't explain the memory loss and confusion though that sounds like you need a scan of your brain.

Eliza,

You are really going through a nightmare, I am so sorry, I have heard that you can have pmr and nor have a high sed rate, everyone is different, look at some of Ragnars posts, he never had any pain, figure that out.

I hope you feel better Georgiana

Thank you Reni, Marianne and Georgiana.  It sure is nice to have a place where I can ask questions and know people understand. 

I am so much better than I was.  I may not be able to tell time, but I'm so glad I can walk again, drive and even get the groceries off the shelves myself.  I feel very blessed in that regard.  After this last 1 1/2 years though, I feel like the next autoimmune disease is right there waiting if I overdue stress again. 

I just wish my rheumy had the nerve to give me a dx, even w/o the typical sed rate.  Pinning it down would help me and my doctors know how to manage it when I get flares.  It also seems I'm always having to explain why I dropped out of sight for so long and why I walk like I'm ancient when I get up.  I finally started telling people it was PMR anyway but I feel wierd about that.

This is the strangest disease.  One day I was fine and the next I got slammed in both shoulders.

Thank you for this awesome website, and for answering my question. :- )

Eliza 

Eliza,

Wow! You've been through hell the past year and a half. The memory loss and related issues don't sound at all like PMR. I certainly hope your docs have taken that very seriously and checked all avenues.

I can sure relate to feeling like 100 when you get up to walk. That part of it sounds like classic PMR. Before I was diagnosed, I had a lumbar epidural steroid injection, and was amazed how it made my shoulders and hips feel normal again!! That steroid stuff is powerful stuff, and even if you have a local injection, some of it gets around. Isn't it nice to feel "normal", even for a little while? I wish your docs would give you something, and if prednisone has worked so well, that ought to give thema clue as to what to give you.

Here are a few sites that mention the normal sed rate with PMR. Most that do, just kind of mention it in passing, and seems like the docs ignore it?

www.aafp.org/afp/2000815/789.html

www.arc.org.uk/arthinfo/patpubs/6032/6032.asp

www.rheumatology.org/public/factsheets/pmr_new2.asp

The part about the sed rate is under the "diagnosis" heading or paragraph.
Hope this helps.

I just got back from a follow-up visit with my rheumy, and my sed rate is 44, down 1 from 3 months ago. Guess that is good. The rheumy thinks I probably still have a mild form of PMR. At least he isn't trying to push any meds on me that I don't want, or meds that don't work. I really respect him for that.

Take care.
Reni

My husband has temporal arteritis and PMR. He also had the memory loss but it was caused by the use of the statin drugs (lipitor, etc.)  which he no longer takes because of the side effects.  The problems caused by the statin drugs do not go away immediately and sometimes not at all.  They cause memory loss, severe pains and everyone reacts differently.

He was diagnosed with temporal arteritis in Nov. 2005 and had the biopsy on his arteries to confirm the diagnosis.  His Sed rate was 98 and his C-reactive protein was a whopping 63.  They put him on 60 mg of prednisone.  Last fall, 2006, he was down to 20 mg of prednisone and his Sed rate had dropped to 11.  At this time our doctor lowered his prednisone to 10 and he has had a major flare.  I now 'google' all directives from the doctor before we implement them. I think it is called being to smart to late.  The doctor knew less about prednisone withdrawal than we did!  We have  an appointment at the Mayo Clinic this week and hope we find out something--at least hope we find a medical doctor that knows what he is doing.  I feel deeply for all of you that suffer from this disease and also for your families.

Cap

I'll look at each of those websites and print some things off - thanks!

Also, I had an MRI, then an awake EEG.  The MRI was a little wierd and the EEG was okay.  The neurologist didn't seem too concerned, although she did seem a little shocked when I couldn't count backwards.  They didn't do the tests until my brain was functioning better, but at least I know I didn't have a stroke or something.  She's the one who tested me for Lyme, Lupus and some other things - not the rheumy.

I'm not sure what caused the brain thing.  It could have been autoimmune, some kind of vasculitis or the meds.  I'll have to google temporal arteritis.  I'm suspicious of the neurontin the doctor had given me - I'm not even sure why the first rheumy gave me that - he said it'd make me sleep better.  It did for about 6 months, then I think it may have fried my brain.  I'm extremely sensitive to meds and I've learned to google everything like you.  At least I can take prednisone without too much trouble - except that I'll never come off it again as fast as the last time.

It has been a terrible ride.  I'll never be the same but I'm also very happy that I'm as good as I am.  I'll never take my health for granted again and am enjoying a much less stressful life.  So it's not all bad.

I'm very grateful for your help and wish you all painfree days.

Eliza :- )

 

what did we do before google??!!!Dear Kants,
 
Thats the highest sed rate i ever heard of, your husband must have been feeling pretty terrible. I hope things get better for the both of you.

My sed rate right now is 63, and i can just about walk, started on methotrexate, I hope this is the right thing to do, but i have to listen  to the dr. and do what he says, because i am getting no where, he told me yesterday i am not going to get better, this is an auto immune desease and i will have good days and bad days.

Good Luck     Georgiana
Georgiana,

Well, that's the pits for your dr. to tell you're not going to get better. Maybe they know more about PMR than they are telling us, as so many aren't over it in the couple of years all the literature says. Can one be "cured" or get over autoimmune diseases? I know this PMR is a strange animal. If one can get it again some time after it has "gone away", then is one really cured? Maybe it just goes into remission and then flares again at a later date. I keep googling, hoping there will be some new info.

Take care.

Reni
Reni,

I know what you are saying,  I was a little upset when  dr. told me i was not going to get better.  and your question, can one get cured over an autoimmune disease?  Then you ask your self this.  pmr is inflamation of the blood vessels, does that sound like something that will go away in time all by itself? sounds like a no to me, and i do not want to be a doubting thomas but come on. 

I have been suffering for 5 years and getting worse, not a good sign.

but i will not give up        love georgiana
Georgiana,

Glad to know that you will not give up. Me neither. If I really have a milder form of PMR (since my sed rate is at 44, and I do still have aches, mostly in the neck and hips now), then I have had this for 5 years + also. At least it is not as bad as at the first, but still affects my life - can't do all the things I'd like, or if I do, I sure hurt afterwards. I am thankful that it is better than at the beginning. Wish yours were, too. Hang in there.

Reni

Wow - that is not encouraging.  I was hoping someday the PMR would just go away. 

I did learn to always be aware of my ultra-sensitive autoimmune system - the least little thing can send it over the edge, causing flares and additional autoimmune diseases.  So now I do whatever I can to keep things under control - like an anti-inflammatory diet, a goal of zero stress and I try not to be so sedintary any more.  It sure is a fine line whether excercise helps me or hurts me though.

It would sure be nice to find a doc who really understood this disease.

Eliza

Eliza,

That's good that you are aware of your ultra-sensitive immune system. I used to try to push through all this and do all the things I used to, and then would pay for it royally. I'd make my family almost as miserable as me, because I'd be so useless after doing too much. Since then, I've learned to let go of a lot of things - physical and mental - so am doing a lot better really. Some things I refuse to quit - like my gardening (and that's what ends up really making me ache, unfortunately). I just have to do it in shorter, smaller increments than I used to. Easier siad than done sometimes. My husband let me put some raised beds in our back yard, so I don't have to bend over so far, and that good, loose dirt sure makes it easier now that I don't have to chop and smash clay soil any more with rake and hoe. I don't know what I'd do if I couldn't play in the dirt.

Reni,

Hm, perhaps I should try naprosyn again.  I haven't taken it for a very long time - certainly not since I've had PMR.  I do have to be careful that whatever I take doesn't make the Restless Leg Syndrome worse - that disease is really nasty.  Plaquenel is what triggered that. The MSM sounds interesting.  I'd never heard of it - Ha! Of course I've googled it now. Thanks for the ideas. 

I do wonder if anyone has done studies on outcomes with and without meds.  Do the medications prevent longterm damage or just make us more comfortable in the meantime.  I know with rheumatoid arthritis it's important to stop the damage early, but I get the idea that there isn't much bone change with PMR.  So is it mostly for comfort, or also for treatment?  The joints in my fingers are sure bigger, but nothing like with rheumatoid arthritis.

We have a garden too.  We live on a farm and the last two years were the first in about 100 where there was no vegetable garden here.  This year, I've managed to get the garden in again.  I'm really enjoying the planting and cultivating (like you, in short increments) - everything is coming up too!  It's helping with the stress - it's peaceful out there.  I'm also learning to turn off the news and listen to some nice music.

I was wondering about the aching business. I've been thinking it was from the Restless Leg thing.  Maybe it's the PMR.  Maybe it's both. Who knows. After awhile it's hard to figure out what's causing what.  But, the bottom line is that I am feeling better than I was - Yeah!!!

I hope you get some relief as well.  I can tell you have a wonderful hubby - making you raised gardens and all.  That was really nice of him.  We are lucky to have understanding, supportive families.

Take care,

Eliza

Eliza,

Yes, we do have wonderful families. My husband has been so supportive and really takes good care of me. He "stands in the gap" for me when I am having a hard time; he makes sure the docs know how I am doing if I don't communicate to them.

From what I've read, there is no damage with PMR, so the meds are mostly for comfort. I have gotten so stiff over the last few years, though, that I feel like there is damage because nothing moves like it used to. I seem to be prone to tendonitis a lot, here, there, and everywhere.
even with all the stretching I do, and trying to be careful not to overwork my joints. Oh, well.

Must be nice to live on a farm. I always wanted to do that. My little yard is as close as I'll ever come, I guess. But I have lots of stuff crammed into the small space - besides a bit of grass front and back, we have the 4 raised beds for veggies (16'x4'), one of which is devotred to strawberries (my favorites), rhubarb plants, two blueberry bushes, two grapevines along the back fence (they're young ones that I grew from seed, but one has grapes this year), a marionberry vine and an Italian prune tree in a pot on the patio. Can you tell I like to grow things? I have lots of flowers, too.

Nice chatiing with you.

Reni

Naproxin I think is the same as aleve. And....with my second bout of PMR this I must admit it does help a lot! I have done tests. Going to bed without it makes me feel much worse than if I take it. I take it  before bed. 

It is not true Georgina that it will not get better as your doc said. I am living proof it DOES get better. Don;t give up hope and do not listen to that idiot doctor! He knows
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