Autoimmune SFPN - IVIg - Lyrica - Update
 

Hello All,

I am in some of the worst pain that I have ever felt in my life. I have had my fourth round (4 months) of IVIg and while I have more energy, I have not noticed any change in my neuropathy or inflammation issues. I have been having alot of issues with muscle/tendons in my neck, scapula and lower back. They muscles get tense or tendons stretched and I have what feels like a muscle pull and life is NO fun for week or more. I use lidocaine patches to alleviate some of the pain, but that seems to not be helping right now.
Since I have been having so many issues (pain, muscle wasting, anxiety, burning, shooting pain, ) and my quality of life has declined over the past months, I decided I had to do something. My neuro suggested that I start taking Neurontin or Lyrica. After alot of research, I decided to take the Lyrica at 25MG at night because you could get away with a lower dosage than the Neurontinand it be more effective.. At first, the Lyrica really helped, I gained range of motion in my neck and lower back the 1st day, I am assuming because the nerves were settled down and not signaling as much. Then as time moved on, the Lyrica is less effective. I hoped I could get by with a low dose, but I cant. The Lyrica seems to be wreaking havoc on my muscles now, my body seems to need it to stay limber or craves the Lyrica. I am tensing up again in the morning as if I have not taken anything at night. The half life of Lyrica is a little over 6 hours, so my body must be craving more by morning and I am going though withdrawals. I really wish I could get by without taking anything, we all do, but seems like most of us become desperate and start taking something for one reason or another.
I feel like I am at an impass, do I take more Lyrica and risk losing everything, my job, life, wife etc or have no quality of life and hurt all the time. The Lyrica definitely makes me kinda out of it, so upping the dose will likely have a more profound effect.
I am becoming short term memory forgetful, I have episodes where I am just out of it. I need to maintain my job my for sanity, insurance and income.I am not one to just sit around, even though my body makes me do that more than I ever wanted.
So, I am wondering what to do, it's hard to go back to being like I was 3 weeks ago before the Lyrica. I know the Lyrica is harsh on my system, but I am desperate.
I am tired of feeling this way. I feel like I am losing sight of who I once was and will never be that person again. But, the Lyrica is certainly not the best route, but what else could I try? I have thought about Gralise, but that may have a very similar effect with being out it, just lasts longer due to the much longer half life. I also wondered if if I should stop taking Lyrica and start a Tricyclic like the Noritryptiline i took once before (had some nasty sides like blurred vision, blood pressure drops). It has been suggested that I take Tofranil. I would assume that it would have very similar sides, just like the Nortryptiline with BP drops etc. I have also asked my neuro about taking corticosteroids for the inflammation, have not heard back yet. My inflammation issues were best when I was taking Humira. I took Humira for psoriasis for close to 7 years.
As most of you know, every medication you take has some side effect, it's just trying to find meds that you can tolerate and won't put you down for a dirt nap.
Any thoughts are welcomed...
N1

Nerve pain really sucks. Anytime I think I have it bad I come here and realize it could be alot worse and it scares me.
Why did you stop humira?
Are you taking any supplements? Magnesium has really helped my muscle problems and pains although not totaly goen. I am in a similar boat. I started Cymbalta but its making my digits go numb and my nerve pain worse! lol

Hey Lewie,
I stopped Humira because of the "black box" warning that Humira can cause nerve damage. I do take supplements, Mag, R-Lipoic Acid, B12, B1.
Need to add fish oil back.
I know what you mean by the darn numbsy fingers...
Hard to type!
N1

Hi Nervous,
I'm so sorry you're feeling so poorly. I wish I could give some advice on the medications. I know cymbalta worked for me but others have problems with it.
I'm not sure I will ever go back to the person I was but I'm trying to make myself accept that. I working on doing what I can and be the new me I am.
Hope you find your answer for rx.

Hello Nervous1
 

Hi Nervous1,

I'm sorry to hear you have joined our awful journey.

Everyone's response to Lyrica can differ, but since I'm on it I thought to share my experience with it.

I'm currently on 300mg per day, 150 on the morning and again at night. I also take 200mg Tramadol per day. This keeps my pain manageable so I can work part time, and sleep at night.

Obviously my Lyrica dose age started off much lower and was slowly increased until the electric shocks stopped. That took a few months to achieve. During that time I was spaced out and afraid to drive, but I somehow managed. That was 5 or 6 months ago now. I can tell you that for me at least, I'm fine. No more spaced out feeling. It took roughly 3mths to feel this way.

As for that loss of short term memory, I still have it. It hasn't gotten any worse or better, just stayed at a constant annoying stage. Half way through saying something I'll lose my train of thought and forget what I was talking about.

It's no fun, but its not quite debilitating either. I've adjusted, and learned to live with it.

I've put on some weight.

Doctors have not found a cause for my neuropathy so I'm experimenting. Since Xmas went gluten free and have noticed quite a few changes in my body. The neuropathy is still there, but other life long symptoms have started clearing, and some brain fog has lifted. So my hope is gluten has poisoned me for decades, and once my nerves heal I can wave goodbye to Lyrica. But that's a long way off.

I hope your story is shorter than mine & others here.