Foot Pain

[Jack]

There seem to have been a lot of posts recently from members mentioning their foot pain. This does not seem to be documented as a symptom on most of the Wegener's related sites, but I'm guessing that it is in fact quite common. I have suffered from it myself for many years and had all the tests with very little in the way of a positive diagnosis. It has generally been blamed on the steroids, but with no clear explanation (speculation about tendon problems).

I know others have foot pain caused by nerve damage, but does anyone else have the unexplained type like mine?

Perhaps it should be added to the list of common Wegener's symptoms or is it a drug side effect?

[Lightwarrior]

I had foot pain so badly that I couldn't walk barefoot across my tile floor for about a year before I was diagnosed, once I started medications it went away. I gues that puts me in the Wegener's sympton camp.

[csgaippe]

I was diagnosed with Raynaud's Disease over 30 years ago, which is also an auto-immune disease that compromises the circulation to the extremities. When the Wegs symptoms started, my Raynaud's symptoms escalated very quickly and the foot pain was making walking extemely difficult. The docs tell me that Wegs can actually bring on Raynaud's type symptoms or make existing ones a lot worse. The foot pain is much more manageable with treatment, but by no means gone.
Cathie

[DEE]

i told wg consult on thursday about costant foot pain he blamed steriods hence why im trying to lower them does not seem to make ant difference yet !
even with painkillers it still hurts to put foot to floor or stand in one place for to long DEEx

[elephant]

The only time I had foot pain ( bottom of my feet hurt..could barely walk ) is when I was around 14 yrs old. At that time they diagnosed me with arthritis and gave me aspirin. I took 6-10 aspirin's a day it worked. By the end of the day my feet stopped hurting and I could walk normal. By the time I was 15 I got worse, kidneys started to fail.
I did have slight foot pain a few years ago, but blamed it on old gym shoes. :0

[Sangye]

I've definitely correlated my foot pain with Wegs. If it feels like my bones are pushing through my soles when I stand or walk, that's one of my red flags for Wegs increasing. My ankles and feet also swell much more when it's Wegs, on top of the chronic swelling I have from blood clot damage.

[Lola]

One of my earliest undiagnosed symptoms was terrible foot pain, as described by Sangye - felt like my bones were pushing through my soles. This pain started my attempts to alter the impact of my profession on my feet. The pain prompted me to beg for bunion and hammertoe surgery. Had the surgery - pain did not go away. Once I started treatment, the pain lessened, but still exists.

[DEE]

Sangye the pain in right foot and leg has been worse since i had blood clos but is always there along with pain in toes ans the soles of my feet going from been very cold or very hot ?
before dxt i was told it was arthritis and to loose weight and do more exercise by the gp that miss my more major flare last year and to which i changed to the more senoir partner who has been brill :) DEEx

[elephant]

Dee, give it time. The only thing I can think of is that maybe you need another ultrasound to check that leg? I know when I was on high dose of prednisone my feet would get hot/ cold. They felt weird...but got better once prednisone was tapered.

[DEE]

started taper two days ago feeling rubbish going to give a few days to see if things settle down seem to remember i felt like this last time tried to lower preds !!!!! DEEx

[Sangye]

Dee, I'm concerned that you've been on ctx awhile and you still have lots of symptoms of active Wegs, and also that you can't lower pred. Can you remind me when you started on ctx and how much you're on?

[DEE]

hi sangye iwas on mxt may to oct 25mg then 150mg ctx from oct up to date
preds started at 60mg preds in oct got down before flare in jan to30mg then which was put up again to 45mg gradually came down to 25mg and this week going to 22.5mg for four weeks until i see wg consult again
its been one of those weeks waiting fro urniologist appoint for bladder prob rhemy appoint about joints ultra scan for abdm to check liver and kidneys and to add to list hearing aid for right ear ready three weeks butt bascially im so tired :) DEE X ps its chemo he does not want to alter

MED LIST
WARFARIN 6MG DAILY
CYCLOPHOSHMIDE 150MG DAILY
TRAMOL50MG FOUR TIMES D
CO TRIMOXZOLE 160/800MG EVERY SECOND DAY
AMLODIPINE 5MG DAILY RISONATE SODIUM 35MG ONCE AWEEK
PREDINDOPRIL 2MG DAILY
LANSOPRAZOLE 30MG DAILY
ACAL /VITD 1500C 400 D TWICE A DAY
ATENOLOL 25MG DAILY
ATROVENT 2O MICRO TWICE DAAILY
HENCE WHY I SAY I,LL RATTLE OR GLOW !!!!!!!!!!!!!!!!!!!

[Sangye]

So you've been on ctx for 9 months and the Wegs still isn't under control.... If that were me, I'd be having a serious talk with my Wegs doc about trying something different.

[Jack]

Agree with Sangye. If ctx has not worked after 6 months it perhaps is not the treatment you need. The risks of adverse side effects are also increasing if you stay on it for too long.

[DEE]

iv talk to him last thursday he said its the only thing that keeping me stable at the moment
ordered a shed load of new test seeing him in three weeks with hubby
to see rheumatologist for full assessment
wants to be sure over blood clots problem !!
im just hanging on at the moment only so much can cope with maybe at limit just now DEEx

[Jack]

I think I would be asking about an alternative therapy such as Rituximab. There is a thread - http://www.wegeners-granulomatosis.com/forum/medication/718-all-about-rituximab.html

[DEE]

question Jack if i come off cxt and have to go on mantance drug do you come off cxt all at once or taper like preds

[DEE]

i think that why he wants assessment with rheumatologist because she uses Rituximab therapy

[Jack]

question Jack if i come off cxt and have to go on mantance drug do you come off cxt all at once or taper like preds
When I have made the switch from ctx to azathioprine I've just done it in one simple step, but I have always tolerated these drugs very well so this may be a factor.

[DEE]

thanks Jack :) DEEx

[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

[Jack]

While staying here at my sister's place I'm having a glass (or even two) of single malt every night. :)

My best friend says that I should drink more, but I suspect that he is borderline alcoholic so perhaps he is not the one to listen to.

[Doug]

Or a Scot! We prefer to be legless, actually. Just kidding. Hope the foot pain eases up.

[elephant]

My bottom of foot pain that I had when I was 14 years old went away after treatment ( prednisone and cytoxan ...but was not compliant).

[jola57]

It seems that many do have this problem. I just found out that my xray of left anckle was just fine, but I already told him that it would be. It is my muscles from the dropped foot that cand keep the anckle in its right position. I can relate to all of you that can't walk the distance without stopping.
Legs are also the first thing that I noticed going bad looking back on my skiing history.

[mickoko]

Just to let you know jack,
I have had foot pains for ages now but I had all the tests and they said all I had was nerve damage in my feet, then I started getting gout a lot in my feet which they could not explain but put me on a short course of steroids for this, then after so long the gout disappeared. Then one day it was back but on the side of my feet(on the bone at the side), I went to the doctors who said he did not think it was gout, and sent me for an x-ray to check it out. X-ray negative and nothing found but they still did not think it was gout, so then I was lost. Finally, I was told that as soon as it comes on again, I was to go straight to the hospital to have more tests. This was just before xmas, but I have not had it since. Will let you know if I get it again and what the test outcome is.

[Jack]

I'm pretty sure from the posts on this forum that it is just part of having Wegener's, but since it is virtually undocumented, the specialists are confused by it. Someone needs to write a paper! ;)

[drz]

Most of the symptoms people describe here (and my own experience with feet pain) are probably going to be described or diagnosed by most doctors as resulting from neuropathy or peripheral artery disease. Mine was plus diagnosis of plantar fasciitis which I might have had too. I know i had neuropathy in my feet for many years from diabetes before i was diagnosed with Wegener's disease. I had to learn walk different to keep from stumbling and falling down because of damage to motor nerves. My knees got pretty scarred up before I got better at it. Damage to sensory nerves interferes with balance and makes it necessary to concentrate when wlaking in order to remain upright. Neuropathy is listed as one of possible side effects of Wegener's disease so why aren't more doctors knowledgeable about it. Unfortunately though there is little effective treatment in many cases. Lyrica can help with pain as can neurontin, but neurontin really messed up my balance so I could not tolerate it.

[Hal]

I was not diagnosed when this thread was started, but I too have that "walking on bone" pain in my heels whenever I place them on the floor. I cannot walk unless I am wearing padding of some sort, such as slippers or shoes. I am also taking Lyrica to try and deaden the pain. I find it weird because I also have nerve damage, causing the pads and ankles of my feet to have no feeling, yet I also have pain too. Funky disease this.

[elephant]

I remember as a young teenage and a couple of years ago just walk on my feet hurt so bad it took me a long time just to walk across a room. I know now that this means active WG in my case.

[Jack]

I think that for many of us, although we may consider ourselves to be free from Wegener's symptoms, there is still perhaps a little of it rumbling away in the background. It is often difficult to distinguish this from drug side effects, but over the years I have come around to thinking that my remaining ear problems and foot pain are Wegener's symptoms. They both tend to come and go to some extent and will also respond to increased doses of Pred. and get worse when I try to reduce.

[ScreaminMeanie]

Does anyone have freezing/burning in their feet, too? I know that since my nerve damage was likely caused by the vasculitis process destroying the blood vessels that supply the nerves in my feet, it is quite likely that the circulation in my feet is impaired. If I sit down for awhile to relax, my feet will turn into blocks of ice. Then if I get up and move around for even a few seconds, they feel like they're burning and they start sweating. Does anyone else experience anything like this?

[vincelv]

i had foot pain at the bottom of my foot even before the meds..like the bottom of my foot would lock up..and stiffin..but idk if that is a symptom of wg

[elephant]

It could be a symtom of prednisone. Actually mine was doing that when ever I took Bactrim DS twice daily for almost a month, along with the other meds. With all these meds that we are on who knows?

[jola57]

Hal have you ever tried to explain the neuropathy in your feet yet feeling extreme pain to your doc? Everytime I try I just get this funny look like "huhhh?"

[ScreaminMeanie]

I'm lucky - my doc totally gets that. The only thing we don't know for sure is if the pain is because the nerve is regenerating, or if it's because my WG is active.

[Hal]

Yup, my feet are often blocks of ice as well. Moving around and getting the circulation going helps for sure. I also have a heating pad that I put oover them whilst watching TV ... that warms them up quite nicely!

[Cindy]

I have had chronic foot pain in my left for for several years. At one point I could not walk on it. Tried everything. Finally my WG doctor ordered an MRI that showed unexplained fluid through-out my metatarsols joints and athritis. I had to give up ballroom dancing (which was one thing my hubby and I loved to do together).

FYI: I have never been on steroids. I cannot take them due to extreme psychotropic effect.

Because I teach for a living, I work on my feet so I wear the best shoes for feet health and live this the pain.

[pberggren1]

I have had chronic foot pain in my left for for several years. At one point I could not walk on it. Tried everything. Finally my WG doctor ordered an MRI that showed unexplained fluid through-out my metatarsols joints and athritis. I had to give up ballroom dancing (which was one thing my hubby and I loved to do together).

FYI: I have never been on steroids. I cannot take them due to extreme psychotropic effect.

Because I teach for a living, I work on my feet so I wear the best shoes for feet health and live this the pain.

Can't they take the fluid out somehow Cindy?

[Cindy]

I am going to check on my foot after they finsh with my back. I go to UCLA for other procedure on Wednesday (hopefully my last).

No one knows better than you, it's just one thing after another. We just have to keep our chins up!

[drz]

I have had chronic foot pain in my left for for several years. At one point I could not walk on it. Tried everything. Finally my WG doctor ordered an MRI that showed unexplained fluid through-out my metatarsols joints and athritis. I had to give up ballroom dancing (which was one thing my hubby and I loved to do together).

FYI: I have never been on steroids. I cannot take them due to extreme psychotropic effect.

Because I teach for a living, I work on my feet so I wear the best shoes for feet health and live this the pain.

How do you tolerate climbing mountains with feet pain? Do you get special orthotic shoes to wear? I find they are are more comfortable with the custom made insoles.

[Cindy]

Great question!

I had to stop rock climbing because of the super flexible shoes, but when mountain climbing I wear boots with fridged soles so I do not flex my metatarsol joints.

I also had to give up ballroom dancing :(