SFN Treatment - Not Happy

[wildforwater]

Help!!

I'm waiting for my IVIG infusions to be approved, but in the meantime, I started on Lyrica, the very lowest dose, a week ago...morning and night...and I feel HORRIBLE.  Very tired, spaced-out, headache, weepy, cranky, dizzy, and all-over achy feeling.  My eyelids and fingers were swollen this morning too and I have little appetite.  Just put in a call to my Neuro to ask if taking Lyrica was medically necessary or used simply for the pain because I'd rather be in pain than take it...and I want more energy, not less. Actually, compared to what showed up in my biopsy results, my pain is minimal, so I'm wondering if it needs to be treated at all, even with IVIG (although my Neuro says it will be very good for me).    Any feedback would be appreciated.  My Neuro is on vacation this week, so I have to wait until she calls in to get an answer.

Maria

[warmwaters]

What you are reporting is similar to my reaction to Lyrica. 

According to the Lyrica materials

Less serious side effects may include:

dizziness, drowsiness;
loss of balance or coordination;
problems with memory or concentration;
breast swelling;
tremors; or
dry mouth, constipation.


Now, they say they are less serious, but that's only in contrast to allergic reactions and dying.   If you have to actual try to lead your life with dizziness drowsiness and loss of balance it's no easy thing.

The goal with the drugs like lyrics is to slow the damage to your nerves.  It's a question of whether the cure is worse than the problem. I know I couldn't handle lyrica at all. 

I'm not a doctor, so I'm not sure if there's a procedure for stopping it. With some of these meds you should taper.

Does your Neuro's office have nurse practitioner or a backup doctor that could help you figure out what to do?  Or would your Primary Care doctor be able to help?

[wildforwater]

I totally agree with you about it being no easy thing with those side effects.  And now that you mention it, I already suffer from tremors and they, as well as my dryness, have been worse since starting Lyrica.  For me, the benefits do not outweight the risks.

I cut out my morning dose, but I will take my evening and then call my GP in the morning about stopping. No nurse practitioner available.  Good advice.    My neuro also prescribed Metanx, a b vitamin complex with folic acid and something else that is ususally used for diabetic peripheral neuropathy.  It's a little expensive at my pharmacy ($125/month) and not covered by my insurance, so I haven't gotten the prescription filled yet. She did give me the name of an online pharmacy that is almost half the price, so I'm going to try it.  At least it's natural.

Sjogren's is definately the gift that keeps on giving! Thanks for responding.

Maria

[anita]

I call it the Zombie drug...because that what it makes you feel like when taking it...even low doses.  I tried it after I maxed out on Neurontin and it lasted just a few days before I stopped.  I tried it again a few years ago...just to say I did, because I wanted to try EVERYTHING possible before resorting to narcotics for pain mgmt.  Again, I only made a week this time...thinking if I tried it a little longer the side effect would wear off...WRONG!

I have never heard that drugs like Lyrica are to help slow damage to the nerves.  They actually block nerve receptors...not have any direct of helping nerves, as far as I know.  I'd certainly be interested in reading about it helped slow damage if you have any details on this.  These drugs were discovered to help neuropathy pain by accident when patients taking these for seizures started having improvement in their nerve pain.  Neurontin is in the same class, but I was able to take this for several years before maxing out at the highest dose my doctor would allow.

[Jasper]

It is also my understanding that drugs like Lyrica do not slow the damage to the nerves. They are given to reduce the nerve pain associated with the neuropathy.

[rnathans]

I can absolutely confirm that Lyrica is strictly for pain relief and does nothing to slow progression of the neuropathy. IVIG on the other hand can slow progression if the neuropathy is immune mediated.

[warmwaters]

Apologies to all for the misinformation regarding stopping nerve damage. My mistake...

[SjoDry]

Wow,

I can't speak to the Lyrica, but the IVIG infusions have helped with some of my neuropathic pain.

Good luck.
SjoDry

[gurs]

Yeah, I heard that can happen with that drug, that is why I refuse to even try it. Im a zombie anyways. Ive been dealing with shingle pain and my doc wanted me to try lyrica, I said I will deal with the pain naturally .Seems almost every medication we need has some side effects. Often though, I see docs prescribe wayyyyyy to high of a dose on these as well. It might be a standard dose, but I learned that when I try a new medication, I cut the dose down. I make sure from the pharmacy that I can cut my tablets etc and take 1/4 (example) to see how I tolerate it. You can always up your dosage.

Gursie

[Carolina]

I take gabapentin for the effects of SFN, and it works well for that, for ME.  I feel a bit 'relaxed', but when I become active, the feeling is gone.  I haven't tried Lyrica.  There are other medications for seizures that may have the same positive effect on nerve pain: Lamictal, Oxcarbazepine, and Topomax are all medications I have taken.

Here is the complete list:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medication-list

I have IVIG, but not at the level that would stop neuropathy.  My legs are already profoundly damaged.  It isn't known exactly what caused my neuropathy, and it HAS progressed from PN to SFN.  So I just play it by ear, to say the least.

Hugs,  Elaine

[susanep]

A few years  back I tried the lyrica and felt the same way as a zombie. I stopped it fast. I do fine on Gabapentin.

susanep

[wildforwater]

Thanks for all the helpful info everyone and no worries Warmwaters.  

Anita, Zombie is the perfect word for how I felt on Lyrica...on the very lowest dose!  Can't imagine how I would have felt when the dose was increased!!  Off two days now and I'm feeling a lot better Zombie-wise.  Although my worst symptom, moreso than the stabbing pains and numbness, is very painful burning itchy patches of skin, and that is driving me nuts today.  I really could use some relief. Cold compresses do help somewhat.  I have what is called non-length dependent small fiber neuropathy, so it's not limited to my feet and hands, it's pretty much all over.

Hope I get approved for IVIG, Sjodry. I really want to try it.  And thanks for the list, Elaine. I may try gabapentin as well.  Sorry your legs are so damaged but happy you are getting some relief.  That scares me because as I've mentioned countless times, I'm a cyclist and I would hate to have to give up my sport completely.  This disease has already taking a toll on my performance. I'm a mere shell of what I used to be.    They are not sure of the absolute cause of my neuropathy either.  I guess they can sometimes tell with a skin biopsy.   But it is common in Sjogren's and all I know is that I have it and I don't want it.

But Shingles pain, Gurs, ouch!!  I heard that is horrible!

Thanks again everyone.  So nice to know I'm not alone fighting this battle.

Maria