Author Topic: 3600 mg Gabapentin: anyone ELSE on this level?  (Read 2179 times)

Carolina

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3600 mg Gabapentin: anyone ELSE on this level?
« on: January 08, 2015, 05:57:22 AM »
Dearest Sjogren's Angels,

I take 3600 mg of Gabapentin now.  I find it has amazing results for me in terms of feeling very well, and having very little pain.

I know the pain management is also due to both Cymbalta and Medrol, but there is a quality of well being that seems to be due to the Gabapentin.

Do any of you also take this dosage?  How did you arrive at that level and what is it doing for you?

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

anita

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #1 on: January 08, 2015, 06:54:00 AM »
I stopped at 3000mg.  It took me several years years to max out at this level.  You are increasing much faster and won't have any place to go...very soon.  I can't imagine they will up the dose any more after this.  Is your pain returning that fast that you have to increase again and again so quickly?

Maybe this dose will last you years and you can remain pain-free.  So glad you are feeling better!!

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #2 on: January 08, 2015, 07:59:16 PM »
Hi Anita, I appreciate your feed back, as always.

it wasn't so much that my pain was returning as that there were still areas that weren't responding to begin with. 

Even at 2700 mg/day my face, lips and tongue (mostly the tip) were tingling, and burning.  At 3600 mg I no longer have any of those unpleasant sensations.

In addition I feel more centered and 'myself' than I have in ages.  It may not be the gabapentin, but I think it is.

In 2006 a psychiatrist put me on anti convulsants, and I was on them for 5 years.  He did this because he 'felt' that perhaps I would be 'calmer' on them since they are often prescribed for bi-polar condition, even tho'  I was not then nor am I now, bi-polar.  My idea was ' "why not see what happens.?   I've always been willing to try things.  My husband felt that I was easier to get along with, so he was happy.  And I felt fine, so I just went along taking the anti convulsants along with traditional SSRIs.

then in 2011 my Immune Deficiency was identified, and I suspected that perhaps the anti convulsant I was taking at the time, was the cause, so I decreased very slowly, of course.   Children with epilepsy were found to develop Immune Deficiency from their anti convulsants.  And when the anticonvulsants were discontinued, the Immune Deficiency disappeared.

After a year off the Oxcarbazepine, I was still Immune Deficient.  So I accepted that I might actually BE immune deficient but never went back on the Oxcarbazepine.  Most of this time, Anita, was a progressive nightmare of chronic UTI;;s, anemia, hearing loss, knee surgery, changes in my eyes, and then the diagnosis of profound peripheral neuropathy.

I started anti convulsants in 2006, on the most popular drug,  Topomax (Topiramate)  and then went to Lamictal, and finally Oxcarbazepine.   I didn't realize but they were probably 'masking' the pain of my developing peripheral neuropathy, which is why I didn't know I had it until it was profound.

Now, I find that with 3600 mg, along with the Cymbalta and the Medrol, that I am experiencing a sort of stability I haven't had before.

In addition, my PN has not progressed at all.  It can't get worse in my legs, of course, but it hasn't moved upwards.  And the small fiber neuropathy, which was primarily in my hands, arms, face and so on, was not disabling, nor do I imagine it will progress, but I don't really understand it.

The small fiber neuropathy hasn't been established as a diagnosis by testing.  My neurologist trusts my descriptions and prescribed accordingly.

I had thought all these years that the difficulty I had closing my hands was from my osteoarthritis.  But once the gabapentin stopped the small fiber neuropathy pain, I can close my hands and use them more easily.  Never will be perfect of course, but then what is?

I suppose it would be nice to 'have bigger guns' in reserve.  I hadn't thought of that.  I'm just sort of going along and feel so much less anxious and worried about tomorrow.  And I haven't ever BEEN a big worrier, Anita...but now I'm just here in the moment most of the time.

Hugs,  Elaine




Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

litliwlowa

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #3 on: January 10, 2015, 04:45:16 AM »
Elaine?

Keep in mind that Gabapentin DOES affect bone mass, okay? That is another consideration on such a high dose and long term on this medication.

Amanda
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Carolina

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #4 on: January 10, 2015, 12:05:58 PM »
Ah, yes, Amanda, it IS time for me to have another bone density.  I have always had marvelous bone density, but it HAS been 7 years. I guess I don't worry much about it, Amanda.  But of course I will have it checked.

I just have to remember to get it done.  I like to l look at a calendar with NO doctor's appointments.  In fact I like to look at a week with NOTHING....just going to the health club, giving my cats their NSAID, and generally hanging out.

I am lazy beyond belief.  Sitting in my chair, looking out side at the beautiful day (today IS cold but beautiful) and looking through my computer at the world.

Feeling very relaxed and content.  Well, my grandson is here today, slept over night.   My son, his fiancee, the four children came last night and we celebrated the new granddaughter-to-be's 10th birthday (does that even make sense?) Even the beagle and the yellow lab came, and we had a fire in the fireplace and went to our favorite Korean/Japanese restaurant.

I guess there will be a wedding some time this Spring or Summer, probably at the beach.  And my son who lives in Paris and his wife of almost 29 years will come, I do believe.  We do all love family, don't we?  Even when they actually drive us crazy!   :o

My Acid Reflux is gone!  Raising the head of the bed and the timing of the Omeprazole seemed to do it.  My new drug company is finally getting 'organized' tho' the new Rheumatologist doesn't seem to be prescribing the Pilocarpine, even after several emails.

I've learned it's always something, and so I just go with the flow.  If I can do it with my computer, I'm happy.

I doubt if anyone else much is one 36-- mg of Gabapentin. 

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

rnathans

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #5 on: January 10, 2015, 12:20:17 PM »
I am surprised you can stay awake at that dose-lol. I am starting gabapentin but because of my gastroparesis it takes a long time to be absorbed.

Shade

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #6 on: January 10, 2015, 07:34:38 PM »
Try getting pilocarpine Rx from your dentist.
Sjogren's dx 2011, Fibro, Osteoarthritis, Esophagitis, Depression, Anxiety, SFN, OAB, Asthma, Obstructive Breathing
Gabapentin, D3, Omega 3, B12 , Nexium, Prozac, Wellbutrin, Trazodone, Restasis, Evoxac, Meloxicam, Nuvigil, Plaquenil, VESIcare, Dulera, Montelukast, Spiriva

jazzlover

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #7 on: January 11, 2015, 07:33:25 PM »
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Carolina

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Re: 3600 mg Gabapentin: anyone ELSE on this level?
« Reply #8 on: January 12, 2015, 05:37:12 AM »
Thanks jazzlover,

Yes, we have to be on guard for side effects from our meds and treatments.

You probably remember that I have severe Coronary Artery Disease, with angioplasties and stents in 1999.   Although I might not know if damage were starting, it would certainly be something my Cardiologist should also be on guard for.

I will remind her when I see her again in June that I'm on a large dose of Gabapentin.

Our treatments often place us directly between 'the rock and the hard place'.

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3