New member to the group

[mich911]

Hi everyone,

Maybe someone can give me some insight. Today I have a numbness in my right foot on the side where my ankle is and the numbness is going a little up my leg. Has anyone experienced this with WG? Is it inflammation? I took two advil but maybe I should take something stronger. Any advice would be great.

Thanks,
Michelle

[mich911]

Dr Srieh gave a webinar for the Vasculitis Foundation awhile back (2014?). He seemed to know his stuff. Webinar should be in VF site somewhere.

Thanks so much Pete for the information. I'm going to check it out

[drz]

Hi everyone,

Maybe someone can give me some insight. Today I have a numbness in my right foot on the side where my ankle is and the numbness is going a little up my leg. Has anyone experienced this with WG? Is it inflammation? I took two advil but maybe I should take something stronger. Any advice would be great.

Thanks,
Michelle

Wegs can cause or exacerbate neuropathy and this usually starts in the feet but often disappears with effective treatment. Cramps can be serious and painful and may also cause some residual numbness for awhile. Any painful cramps?

[vdub]

I read the treatment would be pregnisone and a drug called Cyotoxen

Pete pretty well answered your question on Cytoxan, but I didn't see anyone respond to pred (unless I missed it). I think the "pregnisone" you are referring to is prednisone. Most all AI diseases are treated with prednisone and some type of immune suppressant like rituximab (rtx), methotrexate (mtx), cytoxan (ctx), and several others.

You will feel wonderful on prednisone, but don't let it fool you. In the long run, it is a nasty drug. You'll be wide awake and get more stuff done than you ever imagined, but at the same time you'll be eating anything you can get your hands on. The net result is that you will gain weight, it is inevitable, so just go with the flow. In the long run, it has some nasty side-effects such as calcium loss. You can read about pred at the url below. Most of us are on pred at various doses and some of us have been on it for years -- I'm going on 6 years, but slowly tapering off and should be off by Sep. Unfortunately, my ESR and CRP were a little high this month, so I might have to go back up for a while. That's kind of the way things go with wegs.
Prednisone (Oral Route) Side Effects - Mayo Clinic

I almost forgot the pred rage -- you will likely get agitated very easily, so you should warn your friends about that, too.

[Alysia]

Pete pretty well answered your question on Cytoxan, but I didn't see anyone respond to pred (unless I missed it). I think the "pregnisone" you are referring to is prednisone. Most all AI diseases are treated with prednisone and some type of immune suppressant like rituximab (rtx), methotrexate (mtx), cytoxan (ctx), and several others.

You will feel wonderful on prednisone, but don't let it fool you. In the long run, it is a nasty drug. You'll be wide awake and get more stuff done than you ever imagined, but at the same time you'll be eating anything you can get your hands on. The net result is that you will gain weight, it is inevitable, so just go with the flow. In the long run, it has some nasty side-effects such as calcium loss. You can read about pred at the url below. Most of us are on pred at various doses and some of us have been on it for years -- I'm going on 6 years, but slowly tapering off and should be off by Sep. Unfortunately, my ESR and CRP were a little high this month, so I might have to go back up for a while. That's kind of the way things go with wegs.
Prednisone (Oral Route) Side Effects - Mayo Clinic

I almost forgot the pred rage -- you will likely get agitated very easily, so you should warn your friends about that, too.

Welcome to our family Mich ♡
Not everyone reacts to pred this way. I didnt gain weight on it. Actually I lost weight. I slept great. Even on high doses. And I can cook special goormet foods while on high doses. No idea how and why. Without eating it.

[drz]

I use the term pregnantzone for pred meds since it gave me the pregnant look.

[mich911]

Wegs can cause or exacerbate neuropathy and this usually starts in the feet but often disappears with effective treatment. Cramps can be serious and painful and may also cause some residual numbness for awhile. Any painful cramps?

Hi DRZ,

It was really painful and there were cramps that came in intervals. It ran up my leg. I finally felt better after taking my two advils & then two tylenol an hour later. However my foot on the ankle side is still feeling numb. I don't know if this is serious and my appt at PENN is not until June 17. Do you know if this will progress worse? All this waiting to get my diagnose is crazy. I have all my bloodwork, waiting for nasal biospy and now waiting for doctor. Any advice for the neuropathy. Am I doing something to cause it or its it just part of WG?

[Pete]

For relief of muscle cramps, I found three things to be helpful. Stay well-hydrated. I eat a banana daily to get more potassium. For awhile, I also took an OTC potassium supplement. Another thing I did was drink tonic water. It has quinine in it which is a natural anti-inflammatory. Don't drink the diet variety as the artificial sweeteners are worse than the HFCS.

These reduced the frequency and severity of the cramps. They should disappear as you get into remission.

[drz]

For cramps I was advised to massage the tight area till it relaxes. I was told not to force a stretch of the cramp area since that might cause tissue damage. That used to be my usual response to force the cramp back to normal position. Being well hydrated, and taking calcium supplements is usually advised too when on pred meds which can also help prevent some type of cramps. I still have cramps frequently but less than I did a few yeas ago.

[annekat]

I do have neuropathy and cramps in my feet that can run up my leg. This mainly happens at night when I'm trying to sleep. Lately, I take 500mg. of magnesium before bed, which seems to help the neuropathy and cramps and promote sleep. Also, calcium and dairy products before bed. Sometimes if I wake up with painful cramps, I find that getting up and walking around helps. Soaking in hot water, esp. with epsom salts, would help, too. And there are foot creams available for neuropathy, I haven't tried them, but they are in drug stores. There have been other threads on this, and I remember one lately, so you might want to try a search on this.