Started steroids for Polymyalgia Rheumatica

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bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 4/29/2010 9:53 AM (GMT -7)   
I had mentioned that I thought I may have polymyalgia rheumatica in a past post but had to wait until my next PM appt.  Well, I had the appt and literally broke down in tears when talking to the doctor about my pain levels.  I also took information about PMR from three respected authorities with me along with a list of all of my symptoms.  The doctor gave me orders for blood testing, which I haven't gotten the results from yet, and he also prescribed prednisone starting at 30mg for 3 days, 20mg for 2 days then 10mg per day after that. 
 
Today is day two on the 30mg and already I am seeing at least a 50% reduction in my pain levels.  The muscle spasms in my lower back and shoulders are much better and my left arm that I couldn't lift past my shoulder when it was extended outward will now move easily to a full upright position.  I'm not 100% yet but I am hoping to see more improvement in the coming days and considering that I do have other issues that can cause pain, any reduction is a blessing.
 
The doctor did suggest a referral to a rheumatologist if it was PMR and I did find one in my home town that a friend goes to and is happy with.  I called her office and she is taking new patients and is familiar with PMR so I will have someone to help keep my steroid use on track so I'm not taking more than necessary and will watch for any complications from it.  My goal is to get off the oxycontin & neurontin along with my doctors help and just use something for bt pain if needed.
 
White Beard, I hope you read this and have had a chance to consult with your doctors about the possibility of you having it.  Anyone with chronic muscle spasms, headaches or jaw pain should read the symptoms of Polymyalgia Rheumatica and Giant Cell Arteris (sp) or GCA. 
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 4/29/2010 10:18 AM (GMT -7)   
Hey Jag,

I'm glad to hear that you are the right track w/ things... and I'm glad the prednisone is helping reduce your pain. I'm hoping your blood results come in quickly, too. I know how emotional it can get when you just want to get to the bottom of what's going on... it sounds like you have doctors, though, that are really working with you... that's a good thing.

Let us know when you get the blood results... and I hope the steroids continue to help you so much....

Take good care...Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 4/29/2010 10:22 AM (GMT -7)   
Jag yes the steroids are wonderful for pain, its amazing what they can do. Hope all goes well with the new rheumy. Good luck.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 4/29/2010 12:10 PM (GMT -7)   
Hi Jag,
Geeze I hope that getting diognosed with this will help you in the long run!!! Thats a good sign that the prednisone is helping! Good luck w/ the rest of your tests and keep us updated!
Here's a Big Hug for you!
Your Buddy,
Pete

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 4/29/2010 12:11 PM (GMT -7)   
I just got back from the hospital and I got some of my blood test results. As usual my sed rate is only a 12 which is normal (0-30), which isn't uncommon in people with PMR. Not all my results were back so I'll have to get the rest from my doctor. The only thing abnormal so far is an elevated B12 of 1179 with 914 being the top normal. I do take a multi-vitamin daily but will ask the doc about this too. To bad there isn't a substantial test for this disease, it's kind of like fibromyalgia, you have to rule out everything else first. He did order a test for Lyme disease also.

Thanks Stray & Mom for the support. I haven't been on much lately cause I just felt crappy and crabby probably would have just gotten on and whined anyway. It would be nice to have a doctor close by that doesn't require you to drive 3hrs every month so you can pay them a co-pay to write out your scripts or poke more needles in you.

Stray I haven't forgotten your steroid warnings and will take your advice. If this becomes long term which from what I've read it could be 2-5 yrs or forever. I do plan on getting down to the lowest does possible and will taper down safely.
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 4/29/2010 12:21 PM (GMT -7)   
Hey Jag,

I'm glad you have found some relief...no matter what the final diagnosis is. I'm also glad you have found someone willing to do testing and rule out other things, if necessary.

Never worry about being crabby....that's part of CP (at least for me) and we will never hold it against you. Everybody here is allowed to vent!

I'm so glad your Dr was willing to listen! I'm on hold right now with the Reumy's office where I have been referred, but I still can't get an appointment. Ugh!! There is noone else here to work with, so I'll keep waiting.

I hope things continue to improve for you!!
Retired Mom


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/29/2010 12:41 PM (GMT -7)   
Jag, I too, am glad that you found some relief to your pain. Of course I'm not familiar with your problem, but you know we all will support no matter what the problem is.

SE :)
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/29/2010 3:26 PM (GMT -7)   
Jag,
I'm glad you're getting some relief, and I hope soon you get an accurate diagnosis so you can continue with a treatment regimen that works for you.

And please don't worry about whining here! Fact is, I think we call that "sharing"! :-)

Hugs,

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/29/2010 4:42 PM (GMT -7)   
Jag,
please be careful with the steroids, the can help the pain, but they can mess up a lot too...
they always mess up my periods (womens cycle) and make me the B word to be with...
I hope you get the blood work results soon, keep us posted. I will keep you in my thoughts and prayers
(((((((((((((((((((((((((((((((((Jag)))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 4/29/2010 9:13 PM (GMT -7)   
Hi Jag
I do hope that this is the answer for you! I do know that Prednisone has always done great things for me. It always lowered my pain and made my joints feel terrific! When I see my pain doctor I will mention it to him! I have googled Polymyalgia rheumatica and I do have some of the symptoms, but not all of them. The thing that makes this bad Jag is these symptoms that we have, (we do seem to both have allot of the same things going on) are also shared with allot of other muscular and neurological disorders, the difficult part is finding out which one it is! It is so frustrating, I will mention it though, because I think that we also share the deep desire to find answers to all that we are going through with this pain, and I like you would really like to get off of these pain meds some day it that is at all possible, and I do hope that it is! Anyway keep us posted on how this all turns out for you!
Good Luck Jag!

White Beard

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 4/30/2010 4:42 AM (GMT -7)   
White Beard, I know what you are saying about trying to sort out what is what with all of the different conditions we face.  I just took my third days worth of prednisone so I'm still working on sorting things out.  I have noticed a distinct improvement in my shoulder & neck area as far as movement & lowered muscle tension.  Also, like I said, I can now move my left arm easily.  I've also slept until the alarm went off the last two nights which I haven't done in a long time due to my hips aching so bad and my body so stiff that it hurt to just turn over.  My overall mood seems to have improved though with the lessening of pain and that is a very good thing.  My husband is happy too!
 
I hadn't seen hardly any improvement in my lower back or hips after the rf I had done but the doctor said that some people require up to six weeks to see an improvement but it seems strange that as soon as I started the steroids these areas improved, so now I'm not sure if it was the rf or the steroids.
 
I go back to the doctor this coming Wednesday and plan on asking him to keep me on the steroids and try to start getting off the oxycontin to see how my pain reacts without this.  Also, I'd like to try and get off the Neurontin too.  This may take time because I definately notice withdrawl symptoms if I am late on even one dose of oxycontin and am probably physically dependent on it now.  I don't plan on giving up my breakthrough meds yet because I will probably still need them to controll my osteoarthritis and facet syndrome issues.  I've still got problems with the bulging disc at L-2/3 but this only gives me problems if I over due the bending or if the weather systems are going crazy.
 
I haven't seen an improvement in my stiff hands in the mornings so this is probably arthritis related and my lower back does get sore if I bend too much so the facet thing is still their too.  Hopefully with time I'll get everything straightened out but I have seen a definate improvement and plan on pursuing the Polymyalgia Rheumatica further.  Good Luck and let me know what your doctor has to say.
 
PaLady, I liked your sharing vs. whining idea.  You are so right!
 
Chart, I'm almost past the menstral thing.  It's kinda weird though, they say you have to go 1 yr without a period to be considered post menopausal but I can make it 7-8 months without one then wham Mother Nature calls once again.  At least the night sweats, hot flashes and all the other lovely side effects seem to have settled down.
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 4/30/2010 6:10 AM (GMT -7)   
Hey Jag , Congrats big time friend it sounds like you've made some good progress and thats got to feel good .I know whenever you can recover movement its a great feeling , take it in and enjoy it buddy you deserve all the recovery you can get ! Again great work Jag !!! Mikel

HIV+ , Need hip replacement , have a cellulitus like condition on leg that is stubborn , using anti-biotics to try to get rid of but its stubborn .Started eating completley healthy juicing every day , no sugar , taking vitiamins and anti-oxidents , virigin coconut oil ,only veggies and fruits mostly , no red meat .feel better.Meds:viracept truvada,indothemicin. Pain from hip and leg use cane or rolator to walk .                                                                                                                 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/30/2010 8:56 PM (GMT -7)   
 
 
   Dear Jag,
 
      Good evening *warm hugg* I am sorry my posting has been sporradic at best. I hope you are resting by now. More so, another good nights rest!
 
      I am glad that you are able to move ahead with the steroid treatment. It sounds like the improvment is ten fold. Thank goodness too, you ve had to endure through far too much pain and endless, sleepless nights for far to long.
 
     I hate to say it but you are probably right. I don't think it is RF that is giving you relief in the low back and hipps. It would have eased up already if it had. The improvments were rather quick and all related to when you began the new meds. Though the thought of you going through the RF for nothing is a scary thought....
 
      Will you need to do something about the B12 levels? I hope you can get it within normal range too. One less thing to worry about.
 
      It is wonderful that you have such good news to share. about darn time! I hope you have a great weekend and finally have a chance to enjoy yourself a bit.
 
*warm huggs*
     dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

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