Foot Numbness

[KenL]

Greetings to all,
I was diagnosed with WG in Nov 2011 and am currently on the Gliepiride, Prednisone, Omeprazole, Cyclophosphamide, and Bactrim. Apporx. 6 weeks ago I started getting a numbness on the bottoms of both feet. It feels something like when you may have gotten your feet very-very cold and they felt numbness until they warmed up. Could this be from the med’s or is a condition of the WG? Anyone had this problem? Thanks for any info you may provide. (Anyone from Spokane, Wa?)
Ken

[Dirty Don]

It's the neuropathy, an effect of the WG...I have it on top of my feet...fun trying to get balanced sometimes!!! LOL...then again, I'm a klutz anyway, this just furthers the problem!

[annekat]

A lot of us have this problem, but it seems to be different for everyone. For some, there is significant pain. For me, it is a numbness concentrated in my toes and the front of my feet, accompanied sometimes by cramping. It has improved significantly as my overall symptoms improve under treatment with the meds.

As for finding someone in Spokane, we have a member map available online that might show someone in that area, if that person has put themselves on the map. I don't know how to put the map link on here for you, so I hope someone else will. Perhaps that link could be put at the top of the main page under the Community tab. There is also a member directory, but I just checked it and it doesn't seem to show locations of the members. Good luck with that!

Anne

[crackers]

i too suffer from numb feet but only after walking,usually about 100 yards.the hospital has put this down to vasculitis which has damaged the veins to the extent that there is very little blood flow to my lower legs.they are reluctant to try and inflate the veins because of their poor condition.if it went wrong i would lose my leg or legs. john.

[Al]

Greetings to all,
I was diagnosed with WG in Nov 2011 and am currently on the Gliepiride, Prednisone, Omeprazole, Cyclophosphamide, and Bactrim. Apporx. 6 weeks ago I started getting a numbness on the bottoms of both feet. It feels something like when you may have gotten your feet very-very cold and they felt numbness until they warmed up. Could this be from the med’s or is a condition of the WG? Anyone had this problem? Thanks for any info you may provide. (Anyone from Spokane, Wa?)
Ken Neuropathy comes with the territory, Ken; a high percentage of Weggies have some kind of neural anomalies. I can't wear leather shoes for more than about 15 minutes, for instance. Others will have similar stories. Sorry about this!

Al

[KathyB]

Join the club, Ken! I have numbing in my feet and hands primarily. Some days are worse than others. And you'll hear we all have individual symptoms and experiences. But we are all united under the WG dx!

[annekat]

Ken, here is the link to the WegMap (http://www.zeemaps.com/map?group=242717). I only see vdub and ArlaMo anywhere near Spokane, but you can put yourself on there, and that doesn't mean there isn't anyone else from there in the membership. For other posts about the WegMap, do a search on it at the top of the main page.

Anne

[KenL]

Thanks Annekat, I submitted my name of the map. Hopefully, someone from Spokane, Wa will answer.
Ken

[KenL]

Thanks to all that replied to my “foot numbness” question. Looks like it something I have to live with.
Ken

[annekat]

Thanks Annekat, I submitted my name of the map. Hopefully, someone from Spokane, Wa will answer.
Ken Great to see you on the map, Ken, and I hope someone from Spokane sees you there and responds! Looking at the membership list I see lots of members who I haven't seen posts from, and there are also guests who read the forum. Maybe there is someone from Spokane who doesn't check in often but eventually will, so keep trying!

Anne

[Sangye]

Greetings to all,
I was diagnosed with WG in Nov 2011 and am currently on the Gliepiride, Prednisone, Omeprazole, Cyclophosphamide, and Bactrim. Apporx. 6 weeks ago I started getting a numbness on the bottoms of both feet. It feels something like when you may have gotten your feet very-very cold and they felt numbness until they warmed up. Could this be from the med’s or is a condition of the WG? Anyone had this problem? Thanks for any info you may provide. (Anyone from Spokane, Wa?)
Ken
Ken, you shouldn't assume this is neuropathy. Nutritional imbalances can cause those symptoms and other conditions can, too. Please make sure to let your doctor know asap. The earlier nerve issues are addressed, the better the outcome.

[KenL]

Thanks Sangye, I will bring it up with my Dr. on my appointment this week. Also thanks to all that submitted inputs on my question.
Ken

[Shannon]

I have been searching the site trying to find out about the foot pain I have been having. Since my diagnosis no one has ever linked my extreme foot pain to my WG. The pain is centered, on both feet, right at the base of my 2nd and 3rd toes and they swell up so badly that my toes actually make a V shape. This problem went away when I was first diagnosed and put on 60 mg of Prednisone. I am on a weekly dose of MTX 20 mg. and the pain in both feet is so bad right now I can barely walk. Why isn't this a generally know symptom of WG? I have just learned it may be connected after Googling foot pain and eventually reading that some WG patients experience this. I am having some other flare symptoms as well (swelling in my fingers and nodules in my fingertips and elbows). As many of know, and would probably agree, going back on Prednisone is a last ditch course of action for me because of the horrible side-effects. It seems like the side-effects come much quicker now than when I first went on the drug back in 2005. Maybe your body just doesn't tolerate it as well after being on and off it over the years. Anyway, let me know more about the foot pain issue and if what I described is what any of you experience.

[Sangye]

Foot pain is VERY common with Wegs. We did a thread on it some time ago. Lots of people said they'd had it at some point, and that it was relieved by Wegs treatment. It was my first symptom. I can tell the Wegs is active when I feel like I'm walking on the bones of my feet. Others have described similar sensations.

Does your rheumy know about all your symptoms creeping back? Don't wait to treat it. If you catch it quickly you might not need to go back on pred at all.

[Shannon]

Thanks so much for your quick reply. I don't see a rheumatologist, I see a pulmonologist but at my six month checkup on May 4 I will definitely bring it up to him. With the 20 mg. of MTX on board you wouldn't think I'd be having the flare so that is a concern. But, you decsribed it exactly right when you said it feels like you are walking on the bones on your feet. Maybe just a low 5 or 10 mg bump of pred would make a difference for a month. Heck, maybe it's just time for something stronger. I've been on the MTX for 3 years nonstop.

[Al]

Thanks so much for your quick reply. I don't see a rheumatologist, I see a pulmonologist but at my six month checkup on May 4 I will definitely bring it up to him. With the 20 mg. of MTX on board you wouldn't think I'd be having the flare so that is a concern. But, you decsribed it exactly right when you said it feels like you are walking on the bones on your feet. Maybe just a low 5 or 10 mg bump of pred would make a difference for a month. Heck, maybe it's just time for something stronger. I've been on the MTX for 3 years nonstop.
Shannon, my first question for you is: What kind of pain? The swelling you talk about sounds like edema, which s painful because of the pressure it exerts on the nerves. This is different than joint pain, though both are regularly associated with WG. (Edema usually means distressed kidneys, which is a common condition in WG, but joint pain also seems to come with the territory.) In any case, I would advise you to seek out a specialist, or at least have your pulmo consult with a specialist. In my experience, pulmos do not, unless they are really pushed, like to look at matters concerning the other organs. (I know this is a generalization, and, as such, unfair to some pulmos. Dr. Specks at the Mayo Clinic, for example, qualifies as a pulmonologist who is a genuine vasculitis expert. But the point remains that you need the best team you can get.)

Al

[Al]

Thanks so much for your quick reply. I don't see a rheumatologist, I see a pulmonologist but at my six month checkup on May 4 I will definitely bring it up to him. With the 20 mg. of MTX on board you wouldn't think I'd be having the flare so that is a concern. But, you decsribed it exactly right when you said it feels like you are walking on the bones on your feet. Maybe just a low 5 or 10 mg bump of pred would make a difference for a month. Heck, maybe it's just time for something stronger. I've been on the MTX for 3 years nonstop....Also, six-month checkups don't cut it with vasculitis; flares can turn inot raging conflagrations in a hirry.

Al

[Sangye]

I agree with what Al said and wanted to add that foot and ankle edema are common signs of active Wegs even when the kidneys aren't affected. Like foot pain, Wegs docs seem to discount it as an indicator of Wegs activity.

[newweg]

I get a tingling more than numbness fingers and feet, sometimes up the front of my shins? Anyone else? Or am I calling tingling what you refer to as numb?

[Al]

"Numbness" or "tingling", it is all neuropathy....

Al

[annekat]

"Numbness" or "tingling", it is all neuropathy....

Al My neuropathy has gotten a lot better with my treatment, but still keeps me from falling asleep at night. It is mainly my feet. It is mainly tingling and numbness. But one night I was lying there and I got a sudden, sharp, piercing pain in one foot, like someone jabbing a long needle all the way into the center of my foot! It went away after a few minutes. Wegs likes to keep things interesting!

[Al]

My neuropathy has gotten a lot better with my treatment, but still keeps me from falling asleep at night. It is mainly my feet. It is mainly tingling and numbness. But one night I was lying there and I got a sudden, sharp, piercing pain in one foot, like someone jabbing a long needle all the way into the center of my foot! It went away after a few minutes. Wegs likes to keep things interesting!Ouch. Like you, Anne, my neuropathy is worst at night. When I have other things to think about, it recedes into the background. But I've never had the sharp. stabbing pain. That sounds too interesting for my tastes....

Al

[annekat]

Ouch. Like you, Anne, my neuropathy is worst at night. When I have other things to think about, it recedes into the background. But I've never had the sharp. stabbing pain. That sounds too interesting for my tastes....

Al Well, it hasn't happened again. I have some structural problems with my feet such as bunions and weak arches, which I suppose could contribute to the problem.

[drz]

My neuropathy has gotten a lot better with my treatment, but still keeps me from falling asleep at night. It is mainly my feet. It is mainly tingling and numbness. But one night I was lying there and I got a sudden, sharp, piercing pain in one foot, like someone jabbing a long needle all the way into the center of my foot! It went away after a few minutes. Wegs likes to keep things interesting!

i had this sharp stabbing or sometimes burning pain when my neuropathy first appeared from diabetes. As it (neuropathy) got more severe the stabbing pain reduced and the numbness increased. Sort of a mixed blessing.

[pberggren1]

I get some weird tingling in my head, hands, and feet sometimes.

[Sangye]

I get some weird tingling in my head, hands, and feet sometimes.
That type of pattern is most likely due to anxiety, Phil. Not surprising, given all that you've gone through. And pred itself induces anxiety.

[pberggren1]

Thanks Sangye. That's what I was thinking as well.

[newweg]

I get that too and across my nose sometimes!

[annekat]

I get that too and across my nose sometimes! I wonder, when I get a little numbness along what used to be the bridge of my nose, if that means blood supply there is low and my saddle nose might get worse! It doesn't happen often, though.

[newweg]

Have you ever been able to get your saddle nose corrected? Did you have the numbness before it became saddle? Just last night, my neighbor told me the right side of my nose looked black and blue,the bridge and it looked broken..it did a little.

[drz]

My neuropathy has finally spread to my hands and is now causing feelings of numbness on outside of palms and little fingers mainly. My feet have been rather numb for years. My neuropathy is due mainly to years of diabetes but it seems the Wegs made it worse.

[pberggren1]

I get some tingling in my hands now and then as well. Just started the past few weeks.

[annekat]

Have you ever been able to get your saddle nose corrected? Did you have the numbness before it became saddle? Just last night, my neighbor told me the right side of my nose looked black and blue,the bridge and it looked broken..it did a little. I don't remember having the numbness before it became saddled. But then that whole area of my face was feeling weird, especially my eyes, which are fine now. I noticed the saddle nose overnight, with no associated pain, but may have had it before. I only noticed it by looking at my profile from the side. I was shocked. From the front, it looks fairly normal except for the dent in my bridge which is largely disguised by my glasses. The tip is very slightly more upturned than before. No, I haven't contemplated getting it fixed yet, except in my fantasies..... I would need a little chunk of money, plus I'd need to wait until I'd been in remission awhile, which I'm not quite yet, and be able to have access to a surgeon who was experienced with Wegs cases, and there aren't many of those, from what I've read here. Maybe by the time I'd be ready for it, something will have changed to make it easier. Otherwise, I'll just live with it. I've seen pictures of much worse cases. I suppose you'd need an ENT to tell for sure whether you are getting a saddle nose.... mine had to dig around in there for awhile before he found the "small" hole in the bony part of my septum. I guess the hole was right where the cartilage was anchored to the bone, so it lost its support and dropped. Good luck, and since you are getting treated for your Wegs, I hope that means the process has been stopped of any saddle nose developing. Mine happened before treatment.

[newweg]

Thank you...I am in middle of major flare up so who knows!