numbness in foot, anyone?

[kulharv]

dirty don,

I just got out of the hospital, 3 weeks ago, and was there for 11 days. My lungs had filled up with blood. Joint pain is how my whole ordeal started 2 yrs ago and my diagnosis last year. The numbness and 'shingles' started a day or so after my last RTX treatment.

The big toe, top of my foot, joint on top connecting foot to leg and now the lower part of my leg are very painful and majority is numb. The blisters would be what looks like a rash or shingles. I have a feeling that this could be a reaction the RTX. I will find out what my specialist thinks tomorrow. I am also scheduled for a bone scan on Wednesday. My prednisone dose is slowly being tapered down and am currently on 30 mg per day. Plus now I have a 2 different, very strong, painkilllers to help me deal with the foot an leg pain.

Does it get easier? Frustrated, extremely frustrated right now!

[ScreaminMeanie]

I have the pain and numbness in my feet and legs, too. Mine is confirmed as peripheral neuropathy. Do you have swelling with yours also? I had major swelling before I was dx'ed. Since the dx and treatment, the swelling is gone, but I still have the pain and numbness. We know it's nerve pain and not from inflammation, because ibuprofen doesn't knock it down at all, while gabapentin and vicodin knock it right out. I don't know what to tell you, except to get with your rheumy and press on until you find an answer. Good luck and keep us posted.

[Red]

I to have numbness and pain and swelling in both feet .Mine too is confirmed as peripheral neuropathy ,gabapentin helped for pain but took 3 week to get the full efect my pain was so bad i tried everything and gabapentin was the ticket been on it for 9 months next month going to stop and see what happens.

[Hal]

Hello Harvi,

When I got sick, just before I went to the ER because of the intense pain in my legs, I too was getting a lot of red spots in my legs. The doctors did not know what they were, but in hindsight I believe they were blood clots. They went into my lungs as well.

I have a lot of nerve damage in both feet and some motor nerves in the legs. Like you, some areas are hyper sensitive. Even a bed sheet brushing against those areas would cause intense pain. Yet most of the feet became numb. Because of the pain I could not even walk, so I deteriorated amazingly quickly, to the point that this time last year I needed a wheelchair to get from the car to the neurologists office in the hospital. The doctors prescribed Lyrica for me, which is a $2 a pill nerve pain killer. I continue to take those while waiting for my nerves to get sorted out. If I stop taking the pain killers I simply will not be able to walk at the moment. So, you are not alone there! I never took RTX but took Cytoxan instead for six months.

I would ask you doctors if those spots might be blood clots, and if you should take blood thinners for a spell until you stabilize.

That was my sort-of-similar experience. Good luck!

Hal.

[ScreaminMeanie]

I feel so lucky. I came close to not being able to walk right after I was dx'ed. The mtx did stop the progression of the PN, so I can't hate mtx too much! I only take gabapentin once or twice a week, at bedtime so I can sleep when the pain is too much. I also have an Rx for vicoprofen. I break the 7.5mg tabs in half and take one a few days a week. They don't knock me out so I can take them during the day, although of course I don't take them at work. I usually take them right after I get home from work.

[kulharv]

Hal, Red and Screamin Meanie,

THANK YOU! This information helps me immensely. I am seeing my rheumy today at 2:45 and will bring up both blood clots and periphal neurpopathy to him for further checking.

I guess the gabapentin will take a bit to kick in as right now it isnt doing anything for me. Only relief if from percacet and that is for like 2 hrs and the it starts to wear off.

Is PN part of WG or is it something different all together?

Once again thanks for all the info!

Muahhhh and a great big hug to all of you!

[Sangye]

Hang in there, Harvi. It sounds like shingles to me. Rtx greatly suppresses the immune system and dormant chicken pox virus can become active. I hope you get good answers today and relief of your pain!

[ScreaminMeanie]

What Sangye said. And yes, PN is a common symptom of WG. Good luck with your rheumy this afternoon.

Mine actually got worse for a few weeks after I started treatment (pred, mtx initially) until I developed foot drop. Luckily, that function returned, but most of both of my feet is still numb. I can live with that, but when the nerves get active, it is no fun at all. My problem is, right now I can't tell if the PN is getting worse or better!

My PN was actually the final step of my diagnosis. Prior to the foot drop, I had such nebulous symptoms that, even though we suspected WG because I'd had it before, we still weren't sure. The foot drop confirmed the PN, so the diagnosis was also confirmed.

[Dirty Don]

Best of luck today Harvi...ask lots of questions, leave no stones unturned. Armed with more info is good and WG is so weird, you need all you can gather!

[kulharv]

Hi Everyone,

First of all thanks to everyone for getting back to. I feel a better hearing from everyone.

Rheumy confirmed that it was |PN, no blood clots or shingles. He increased my prednisone to 60 mg, I had just tapered down to 30!
Also the gabapentin was increased to a max of 2400 mg per day up to 3x per day. I was told that the gabapentin will work and the dose I had originally from my GP was very low.

I was told that it could take a few months to clear up. The swelling is not too bad but the numbness, tingling and the burning sensation are driving me insane. Not to mention now that I have increased my prednisone dose and willl split up am an pm any chance of sleep that I had with the percacet will probably be gone.

Anyways no more whining, done enough the last week! Tomorrow my bone scan so a very early morning.

Good night everyone and hope that everyone is doing well as can be!!