Foot Pain

[Col 23]

Hi Jack
Foot pain was worse before diagnoses could hardly walk, but continues to nag, gets worse when Im tapering. Ankles also ache most days. I do associate
this with Wegs not the meds as I had this before diagnoses.
cheers Col 23

[Sangye]

Dee, I agree with Jack that you should ask your doc about rtx. Nine months on ctx is long enough to put it into remission, much less give you better symptom control. And you still can't get below 20mg pred--that's bad.

When I first began rtx, I was still on ctx. I had to stay on ctx for 2 weeks while I received two rtx infusions. It depends on what the Wegs is doing. I had lung hemorrhage and since the rtx takes 6 weeks to start working, I needed the ctx to cover me.

The original plan was to keep me on ctx for the whole month of rtx, but my bone marrow didn't hold up so we stopped at 2 weeks.

[DEE]

thanks for your advice Sangye i will look into changing at next appoint when tests are complete
at the minute i think im fighting of a cold and yes i will see someone about it if it gets worse thanks again DEE X
need to go to bed will catch up later

[Natalie]

I too have had foot pain over the yrs .. has been noticing it alot lately . my left foot I get a stabbing pain under my big toe It stops me in my tracks and lasts for about 10 sec on and off .
Back about 8 months when I first got up of a morniing my feet couldnt handle my weight , walked around for 20 mins hobbleing before i could put all my weight onto them .. strange !
and way back when before I was diognosed one of my feet Think It was my right foot in the middle oif the night Bang Intence itch lasted about and hour I was ready to call an ambulance it was that crazy . then as quick as it came it went ...Strange !!

Im only on 5 mg of pred atm too so ??
But still havnt got to the bottom of my boob issue yet ? ,. time will tell .

[JanW]

Wasn't on pred at all when I got my first foot symptoms -- bilateral peroneal pain (one year ago May). Eventually altering my gait substantially and now I walk with a limp. PT has helped quite a bit with pain though (and I think the mtx has as well). Thank goodness it isn't both ankles.

I have that same feeling that I am walking on my bones, as opposed to the normal padding that should be on the soles of the feet.

[gmyi]

helo to all
I have foot pain when I walk up in inclined sidewalk after about 50 meters or after 4 to 6 stairs, I think it is from my DVT and some nerve damage and also I have a IVC filter that showers the blood stream up because the pain that I fill is kike pain in the foot muscles like I run about 10 kilometers
I am out of steroids for three years I am wearing elastic socks and take blood I also have damage in my bones from the pred. so they remind me every weather change

[Jack]

OK. So I think that this thread has confirmed that many of us suffer from foot pain and it is probably a little documented Wegs symptom. Now the big question -

Has anyone here found the cure?
I can hardly walk at the moment.

[DEE]

not found a cure but have symptoms like Natalie spend first moments of morning convincing feet to work !!!! sole of feet fell as though im walking on glass and my right ankle does its own thing ! its so painful even with the painkillers im taking
has been worse since dvt even though i to wear compression stocking it also feels heavy at times if you know what i mean :}
walking at snails pace at the moment
it is something im going to try an sort out with wg consult on wednesdsay the list keeps getting biggger '
DEEx

[pberggren1]

Lots of Whiskey, I think.

[DEE]

whiskey sounds ok to me Phil my favorite tipple but not had on in a while DEE x