[HeidiS]

Hi,
I'm new to this forum, and I need some support.I am a severe asthmatic, who requires high doses of steroids when I have an exacerbation, so I have been on and off high doses of steroids my entire life (I'm 51). My last round of solu-medrol and prednisone started in March, when I was hospitalized for pneumonia. Since then, I have not been able to get off it, due to worsening asthma and coughing when my prednisone goes below 20mg a day, so I am currently on a maintenance dose of 20mg, with hopes of going to 10mg starting today. For several years, I have experienced horrible side effects to the steroids-shaking, overly emotional(crying), parasthesia, brain fog, but the main thing is the nerve problems I am currently experiencing. I see a neurologist next week and would appreciate any advice on questions to ask the doctor, etc.
My new nerve symptoms began in April when I developed "foot drop" along with weakness and numbness in my foot and outer calf. My primary doc sent me to PT, which helped to make my foot stronger. Although my foot did get stronger (I wasn't stumbling as much, the numbness started to spread up to the back of my thigh. I let my physical therapist know but I still continued PT. By the next week, the numbness had spread even more, up to my lower buttocks. At that time, my therapist decided we should stop PT because she didn't know what was causing this, and she didn't want to do more harm. She did the strength tests again so that my primary doc could see the difference from when I began PT. My strength had improved, but there was still marked weakness. She also recommended a neurologist, who I see on Tuesday. So I've been waiting for my appointment, keeping a journal of my symptoms, and just trying to get through each day. The nerve problems continue to worsen. Two weeks ago I had a sharp pain like a long bee sting on the outside of my hip, on the same side (left) as the foot drop, parasthesia and numbness. It happened 3-4 times a day and lasted about a minute. This symptom lasted about a week, happening up to 6 times a day, and then it changed. I will feel the bee sting and then it feels like someone is holding a blow torch on the area. This is happening at least 3 times a day, and then pain is so intense that it takes my breath away and can bring me to my knees.
I currently take oral & inhaled meds for my asthma, omeprazole, amitriptyline, gabapentin(neurontin), xanax(which I only take when on steroids for the shaking), prednisone, and I just started a new med, Nucynta, which will hopefully help some of the symptoms. I'm scared that the nerve problems will continue to get worse, until I can't walk.
Sorry this post was so long, but I felt I needed to tell the whole story. Both my primary doctor thinks this is all due to the prednisone, and I tend to agree with him.
Has anyone else experienced nerve problems that they think were caused by steroids? What, if anything, helped to ease the pain and parasthesia? I'm hopeful that the new drug Nucynta will help. Does anyone have advice on what to ask the neurologist? Has anyone had a similar experience-from steroid induced neuropathy to the burning pain, or anything in between?
I need help desperately...I just can't take anymore, and I'm terrified of what the next symptom will be.

[mrsD]

Hi there, Heidi-- Welcome to NeuroTalk.

I have to wonder what antibiotics you were given in the hospital?

Most of the time they use fluoroquinolones for pneumonia there.

These drugs cause nerve damage. So if you were given either, Cipro, Levaquin or Avelox...that may be your problem and not the steroids.

Also people misunderstand antibiotics. These drugs do not kill ALL organisms during an infection. Some remain, to be removed by the immune system and this takes time. Because steroids suppress this action, it will take LONGER to get rid of any nasty bugs.

Some infections themselves leave people with odd nerve symptoms too. Viral and/or bacterial infections often precede a PN development. This may slowly fade for you if this is the case.
The damage by the drugs however, is less clear. Some doctors tell patients 2 years for drug damage, but other sites I've read say it might be lifelong.

[Kitt]

Welcome HeidiS.

[zkrp01]

Hello Heidi, Guessing what comes next is tough. If you lurk and read here it will become obvious that symptoms and causal factors, even diagnosis-diagnoses-plural, are all over the place. That is one of the reasons that attitude, psycology, nutrition,excercize, supplements all come into play. We all seek relief and use every card in the deck available. I was curious if you had any trauma before you developed foot-drop? I slipped on a wet floor and hyper-extended my knee to instigate my foot-drop. Back to sililarities. A couple years ago I had a car accident and three days later I had that "bee-sting" running from my right hip to inside of right knee. Started water therapy, then a couple weeks later physical therapy. 60 days post accident i felt cross-firing to left side and Bam I had "it" on both sides. I was sent home from PT as I was losing ground. I had lumbar pain, hip pain, knee pain,bottocks, all starting with that "burning pathway". I don't write this to shock or worry as my wasting has stopped and strength is returning and I have quit using a walker. Learn to use the search function and study for mitochondrial health, search Amyotrophy, fight the panic and many start a journal because over time it will cut down on the guessing. Good Luck, Ken in Texas.

[caroline2]

Heidi, I don't have the asthma challenge but had a lifetime of allergies/sinus issues prior to 1995 and I was 57 at that time...so many many years of allergy issues....went the whole route, drugs, allergist...and NO HELP.....addicted to the drugs and HOPING for help from allergist....Never Happened.

In 1995 I found OPC's....Pycnogenol first and took it for a year and allergies GONE. Then I switched to grape seed extract and been on these constant for going on 20 yrs..

No drugs no allergist ANYMORE. The main reason I went on Pycnogenol back in 1995, we were told it MAY prevent cancer...and so far so good in that category too. I'm 77 soon.

Now a friend who is asthmatic and pretty severe allergies has been on grape seed for probably like 7 yrs or so and she is MAJORALLY improved with her challenges. She is a bridge friend and years ago I gave her a book I owned to read and the rest is history. She has her husband on grape seed ex for general health maintenance.

Here is a good informative link, read it thru:

www.emaxhealth.com › ... › Asthma Treatment and Symptoms
Oct 25, 2013 - Asthma is a common, chronic and inflammatory condition of the lungs. ... Grape seed extract contains OPC (oligomeric proanthocyanidins) that ...


(When you get to this link, go to the Asthma search and you will find the info listed above.)

It's not a cure all but makes one's life more manageable. I've posted about OPC's on the vitamin/supp section here and also in the Allergy Section. And another area too...I can't say enough about these OPC's...which are: Pycnogenol, Grape Seed Extract, Resveratrol and a couple others....

[Littlepaw]

welcome Heidi,

I am sorry for what you are going through. From your post it sounds like your symptoms are just on the one leg. Have they done any nerve conduction study related to your nerve drop? Have they recommended MRI for your back since you have the thigh shooting pains? It sounds like you could have something going on with an impingement somewhere.

sending hugs,

[canagirl]

Originally Posted by caroline2

Heidi, I don't have the asthma challenge but had a lifetime of allergies/sinus issues prior to 1995 and I was 57 at that time...so many many years of allergy issues....went the whole route, drugs, allergist...and NO HELP.....addicted to the drugs and HOPING for help from allergist....Never Happened.

In 1995 I found OPC's....Pycnogenol first and took it for a year and allergies GONE. Then I switched to grape seed extract and been on these constant for going on 20 yrs..

No drugs no allergist ANYMORE. The main reason I went on Pycnogenol back in 1995, we were told it MAY prevent cancer...and so far so good in that category too. I'm 77 soon.

Now a friend who is asthmatic and pretty severe allergies has been on grape seed for probably like 7 yrs or so and she is MAJORALLY improved with her challenges. She is a bridge friend and years ago I gave her a book I owned to read and the rest is history. She has her husband on grape seed ex for general health maintenance.

Here is a good informative link, read it thru:

www.emaxhealth.com › ... › Asthma Treatment and Symptoms
Oct 25, 2013 - Asthma is a common, chronic and inflammatory condition of the lungs. ... Grape seed extract contains OPC (oligomeric proanthocyanidins) that ...


(When you get to this link, go to the Asthma search and you will find the info listed above.)

It's not a cure all but makes one's life more manageable. I've posted about OPC's on the vitamin/supp section here and also in the Allergy Section. And another area too...I can't say enough about these OPC's...which are: Pycnogenol, Grape Seed Extract, Resveratrol and a couple others....

Do u take all of these at once? Or just the grape seed extract or just resveratol? Etc.
Can u take these with magnesium, vitamin c and d, aloha lipoic acid, acetyl l csrnitine and gabapentin?

[caroline2]

The only disclaimer I know of is IF ON PHARMA BLOOD THINNER THEN YOU CAN'T TAKE BOTH, ONE OR THE OTHER.

My main OPC is grape seed extract, vitacost sells a muscadine grape seed that is high in resveratrol and I take it also...I work with both the extract and pain grape seed.

I took Pycnogenol for the first year in 1995 and then tons of research, read books, own books, I did it all.

I take so many supps and there has never been an issue for me in almost 20 yrs....

These OPC's strengthen our IMMUNE SYSTEMS...work on circulation and clean our sticky, dirty blood.

I take my 200mg grape seed ex first thing in morning on empty stomach, I've never had a stomach issue, but if one does, take it with food. The 500mg grape seed (Muscadine cap) from vitacost, I take much later in the day. This is what I do, you can start lower and work up, learn to work with OPC's....we need to take enough for our bodyweight. C

[caroline2]

Guess where all the seeds that used to be in our grapes go? A lot go into grape seed extract....the seeds are the MOST important part of the grape. Most powerful part of grape.

[caroline2]

I use DGL daily as I take Ibuprofen and this is how I protect my stomach lining.