Hip pain with muscle contractions in same leg..is it WG related??

[LisaMarie]

ok guys..I have been away for a bit. between having a hard time getting internet service and getting on the page i have felt lost...so much is going on...I failed the 2 dose RTX ..had a flare they gave me decadron 8mg at home and then 2 weeks later went for my follow up at Mayo which confirmed I still had 1 lonely b cell....they thought my hip might be bursitis since it got swollen and enlarge...but all my rheu labs were negative and about 2 weeks ago i got systemic poison ivy and 20 mg of decadron..mind you I am still on 10 mg pred daily...poison ivy is better but no change in the hip and leg and muscle pain...when i wake up it feels like my leg is contracted...if i wear slanted heels it is not as bad and thru the day it gets toleratable. my toes are pulling up so it is not drop foot....i am suppose to have a bilaterial MRI with contrast of the hips...and possibly start CTX po daily for 6 months...hoping to start after my divorce is done ...since it will most likely make me sick...so any suggestions for my hip....anyone else with the same problem:crying:

[pberggren1]

Yikes Lisa! This is pretty bad. And a divorce on top of it all?!

What exactly is decadron?

[Al]

Decadron is a corticosteroid, Phil, like prednisolone.

Lisa Marie, you really do know how to get into things. This--all of it--sounds like no fun at all. Just out of curiosity, How did you happen into the poison ivy?

Al

[crackers]

the bursa is a fluid filled sac that lies between a tendon and a bone or around joints.bursitis is when the sac becomes inflamed and if around the hip is extremely painful.i was told i have bursitis but also that the head of my femur is dead due to compromised blood flow to it thanks to WG.i am currently waiting for a date for a hip replacement which hopefully get me up and about again.i hope you get yourself sorted out soon Lisa because i know how constant pain wears you down both physically and mentally.
john.

[elephant]

In the beginning stages of treatment with prednisone I too had right hip pain but it went away after a few months. Getting a MRI of the hip to rule out any other diagnosis would help. I just wait it out, the doctors didnt know why I had hip pain.

[LisaMarie]

Al...promise not to laugh...I went outside on a windy day...i am highly sensitive to the stuff and my landlord was showing me the places to avoid when i mow till they can get it cleared out...yes i know here s my sign...getting it in you blood stream is the pits...it pops up in the oddest locations..like your mouth...can you say ouch??

I have muscle contraction too...so MRI here I come....just call me glow worm...lol
between the pain worse in the mporning when i first get up or when I finally collapse in bed i just am not sure how long I can chin up and bear it....not wanting a flare during this lovely divorce...mediation and prayer have become my new best buds

[Al]

...mediation and prayer have become my new best budsI'm not laughing, I assure you. Still, you'll have to admit that your present predicament is really weird! Anyway, You know by now that stress is bad news for Weggies, so go for from keeps you in a good place!

Al

[LisaMarie]

Al,
did you not know I am the weird on here..abberrent right subclavian artery that attachs below my left on the aortic arch and goes between my trach and esophagus...making a trach surgery very dangerous..ie I have tracheal subglotic stenosis....I plan to try my best to stay stress free..not easy but I try...I also ended up with no Igg after RTX the first time and am slowing bluiding it back up...so yes I am always the weird one...but I am still alove and kicking ...just not as high as I use too

[Sangye]

Lisa Marie, MRI doesn't use radiation. So that part is good!

I had bilateral, severe hip joint pain that lasted more than 2 years. We never figured out what caused it. It happened when I got the elevated intracranial pressure a year after Wegs dx. I came home from the hospital and couldn't rotate or flex/extend my hips at all without severe pain. I couldn't take anything but small steps. It acted exactly like avascular necrosis of the femur heads but MRI's 6 months apart were normal. We never figured it out. Over time it eased up and it's gone now. It didn't correlate with Wegs activity at all. Most inexplicable thing I've had yet.

[LisaMarie]

I know MRI s don t have radiation but i will be a glow worn none the less...this hip pain is so weird my toes draw up and my muscles feel like they are contracted...thru the day it eases up but getting up from a sitting position make me wanna chew nails....it makes me gimp..no something i want my boys to see...if i do stretching excercises it kills me so whenever the MRI gets done maybe I waill have some answers....I am finally coming of the decadron and i feel like a flare is coming so I will be heading back to Mayo soon as it does...fun fun...I really do not like this dog right now....not that i ever reall;y liked him...but it was tolerable...not sure he is even tolerable right now...lol...could be worse I can still walk:w00t:




Lisa Marie, MRI doesn't use radiation. So that part is good!

I had bilateral, severe hip joint pain that lasted more than 2 years. We never figured out what caused it. It happened when I got the elevated intracranial pressure a year after Wegs dx. I came home from the hospital and couldn't rotate or flex/extend my hips at all without severe pain. I couldn't take anything but small steps. It acted exactly like avascular necrosis of the femur heads but MRI's 6 months apart were normal. We never figured it out. Over time it eased up and it's gone now. It didn't correlate with Wegs activity at all. Most inexplicable thing I've had yet.

[Al]

Well, do let us know what the MRI says. And don't give the dog too much leash....

Al

[LisaMarie]

Ok Mri finally scheduled for Friday...Denist on Thursday to see what dental work can be done now...I go back in July to Mayo to discuss CTX po daily for 6 months...not really looking forward to that...need a co pilot incase they want to do teast that require sedation...for some reason they don't trust me to walk across the street to the hotel...lol...something about liability issues...hoping for answers on my hip issues...have a great week

[pberggren1]

Yuck, more ctx does not sound good. I forget Lisa, have you tried rtx? Why do they want to do 6 months of ctx starting in July? Are you flaring? Do you drive all the way to Mayo?

[LisaMarie]

Phil
I did RTX and had complications and started with mini flarees as soon as 1 b cell appeared and my trach closed to 50% with 11 b cells so we did RTX again in January but only 2 treatment instead of 4...i flared and they found 1 b cell...I had decadron for the flare and it messed up some labs ,..then i got poison ivy systemic and got more decadron...potent steroid ...so i go back in july to discuss the CTX po i had one dose IV and then started RTX....Dr Specks said 6 months po CTX with weekly labs and close monitoring...but he wants to use it as the last resort..so I wait...jopefully my hip will resolve and not be the WG and my trach will stay open...really hate the denist though,,,but would rather have dental work done than get veggies growing in my heart from a dental infection..lol

[LisaMarie]

I drive to Mayo..about 7 hours one way...just finding a co pilot during the summer months is hard ...most people use that time to vacation with family....but it will all work out...one way or another:w00t: