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jtizz711
04-12-2009, 10:04 AM
I've had the harsh sharp tingly feeling in one of my feet for the past couple of months. I know that this kind of nerve damage comes from the disease. I am taking Gabapentin for the nerve pain because lyrica really didn't do much. One doctor says the nerve damage will completely heal, another says it won't. I want to know if there is anyone else with the same thing and if it has healed up for anyone. Also, has anyone found a way to cope with acne while on prednisone?

jola57
04-13-2009, 04:05 AM
This just goes to show you how differently this disease affects all of us. While I have had no problem with acne, I do have peripheral neuralgia. I do not take lyrica, just do foot rotating excercises. While some feeling has returned and I do not have dropped foot anymore, I do not believe that it will get any better than this. Having said that, each case is so different that you may very well heal completely. I still get the odd sharp tingly feeling, and I think its my nerves tring to work together. How long since you have been diagnosed and what meds are you on?

Luce
04-13-2009, 05:46 AM
I too get lovely acne attacks due to the pred but haven't found a way to cure it. I use a teenager's Clearasil type face wash which seems to keep some of it at bay but as soon as my face clears I get another bout on the other side ;(

Carol
04-13-2009, 03:59 PM
I've got nerve damage too. It's now almost 12 months since it all started for me. It does seem to be getting better very slowly - I had it in my finger tips on one hand and that has gone completely, I had tingly spots on my face and that has stopped but my feet still feel numb. However ...... at the beginning they were quite painful and I couldn't stand the feel of sheets on them or shoes. I walked in lambskin lined boots for ages. So overall I think they are improving - it's the one thing that I feel is left to heal with me now other than generally getting stronger. I did an 14 km bike ride last weekend and this Easter did a wonderful 4 hour bush walk beside the famous Asutralian Snowy River. Just spectacular. Life is feeling normal again. Regards Carol

coffeelover
04-14-2009, 08:06 AM
I too have been getting a slight rash ( not acne) and tingling feelings in my feet. Also, my feet and hands are cramping up (painful cramping) to some extent. My rheumy told me it was the pred. She has lowered my dose a bit, and my cramping, though short lived, seems to be happening a bit more often.
Any suggestions out there?
LIsa coffeelover

Carol
04-14-2009, 12:05 PM
Hi Lisa, I had strange cramps which weren't so painful but what happened was that my feet and hands would just pain just a bit and then slowly draw themselves up. I could see it happening. I would then just have to push them out straight again. It was more of a contracture than a cramp. I decided to take magnesium for it, my rheumy said that was OK. It seems to have fixed it. Now I take a calcium tablet which has magnesium in it so I don't take magnesium separately. Hope this helps. Sanje told me to take the magnesium away from the other medications tho as they ..I think she said ... will ablsorb other medications and render them ineffective. Hope this helps you. Regards Carol

coffeelover
04-16-2009, 12:57 AM
Thanks so much Carol. I do now remember Sangye saying that a while ago. I will take your advice and take the magnesium well after the other meds like pred.
It was nice to hear my "cramps" in my hands and feet have been experienced by someone else. Sometimes you feel like a CRAZY person!
Lisa

Jack
04-16-2009, 08:26 PM
I have just come back from seeing a neurologist about my muscle wastage and pain in my legs and feet. He seems to think that it is due to the effects of long term steroids and immune suppression. He has arranged for some electrical nerve stimulation tests and also a spine and head MRI scan. Not sure what the idea of the scan is, I should have asked! :rolleyes:

Sangye
04-17-2009, 12:06 AM
Jack, the scans would be to rule out something else, like a brain or spinal cord tumor, that could also be causing your symptoms. Not likely, so don't "go there" if you are prone to worrying. (Reading your posts, you don't strike me as a worrier)

The nerve stim tests measure the function of particular nerves that supply the muscles involved. They rule out things like nerve entrapment (ie, squished nerve) or other damage to a nerve. Again, not likely.

Though I was only on pred for just under a year, I've had terrible muscle wasting that has persisted. Can you use a pool?

crackers
04-17-2009, 12:46 AM
i've been suffering cramps for some while now.neck,chest,arms,hands,legs,feet you name it i've had cramps there.also my right thigh muscle has been numb for the last 6 months.i've had the stimulation tests which were inconclusive and not very nice.my rheumy is trying to get me off the steroids but the ENT found what is either a lesion or a tumour at the top of my left nasal passage.so until i have a biopsy done and the results are in everything is on hold.the rate at which my arm and leg muscles are getting weaker makes me suspect long term steroid use.
john

JennyT
04-17-2009, 02:05 AM
Hi
Does anybody has experience with the med aranesp It is to get your red cell counts up. my hemo is very low.
I am back on cytocan 75 mg this time and of course my prednisone 40mg.:confused:
how long took it for anybody to get back a little normal again?\

Let me know pls

Jenny T.

Jack
04-17-2009, 03:35 AM
Thanks for the reply Sangye, that is probably why the neurologist did not volunteer the information. You are right, I don't worry about these things, I'm a bit of a fatalist and just assume that I'll cope should the situation arise.

I have easy access to public pools here and I'm sure this would be good therapy. Unfortunately, against all logic and reasoning, I've developed a bit of a problem with poor self image so I don't look forward to appearing in public wearing only shorts. :(

Roberta
02-08-2011, 02:51 AM
I too have the tingling in my hands and feet, called peripheral neruopathy. My lips will get numb at times, too My doc says it is the prednisone, I take 80 mg daily since Dec 18, 2010. this is all new to me, diagnosed with Wg dec 13, 2010 effects my kidneys. Take Cytoxan 150 mg, and bactrim single strength daily, lisinopril. and atenolol for b/p,prilosec 20 mg bid. I get tired, short of breath at times, lungs are clear though. I don't tak any thing for the nerve damage, hgb is 10 now was 9.6. Rbc is low, but wbc was ok. The reflux bugs me, has increased since I started with all this. Blood sugars have gone up will talk with my primary about adding a oral hypoglycemic to picture. Am trying to watch what I eat though. I don't sleep well, get night sweats too and dizzy at times. So much for whining! I feel it is all I do!

:unsure: Roberta

elephant
02-08-2011, 03:01 AM
Roberta, go ahead and get it out. It is very hard to sleep when your on 80 mg of prednisone. I didn't sleep for about a year! It will get better, just keep on top of your care.

Sangye
02-08-2011, 03:05 AM
Roberta, you need to get the reflux under control because the pred can damage your GI tract. Prilosec doesn't work for everyone. I take Protonix (pantoprazole) when I'm on pred doses over 4mg.

I think I remarked on another thread that 80mg a day for that long is way too long. I question your doctor's ability to treat you.

drz
02-08-2011, 03:58 AM
Roberta, you need to get the reflux under control because the pred can damage your GI tract. Prilosec doesn't work for everyone. I take Protonix (pantoprazole) when I'm on pred doses over 4mg.

I think I remarked on another thread that 80mg a day for that long is way too long. I question your doctor's ability to treat you.

Roberta:

I too had better luck with protonix. I had problems when they cut it back to once a day but things improved again when I went back up to twice a day. I had massive doses of steroid when in patient but they quickly cut back the prednisone to 70, 60, 50 with a 10 mg drop every month. Your post sounds like you have been on 80 for two months, is that right?

gmyi
02-09-2011, 01:02 AM
Hi
Does anybody has experience with the med aranesp It is to get your red cell counts up. my hemo is very low.
I am back on cytocan 75 mg this time and of course my prednisone 40mg.:confused:
how long took it for anybody to get back a little normal again?\

Let me know pls

Jenny T.

i had very good results when i took arenesp for about 4 month then the red cells count get up and i stoped the treatment it was 3.5 years ago