Neurontin at one week: MEH!

[Carolina]

Dearest Sjogren's Angels,

Well, I didn't tell my doctor 'Meh' exactly!  But I did say:

Neurotin update:

One week:  300 mg 3xday.

Positive:  mild decrease in pain,tingling, burning, itching of face, tongue, lips, hands, forearms, feet.

Negative: headache, dizziness.

So far the sick headache and the increased dizziness outweigh any mild benefits from mildly decreased neuropathy.  If anything I notice the slightly less constant symptoms more than the constant symptoms, if that makes any sense?

I always thought I didn't notice the development of my profound Peripheral Neuropathy due to the anti convulsant meds I was taking during the time they developed.  And that may be true, because none of them was Neurontin.

Anyway, I''m not enamored of Neurontin at this point.

I'd just as soon not take it.

But I'll wait to see what the Neurologist says.

Next week, my IVIG.  And so it goes. 

Hugs,  Elaine

[cccourt1942]

 

[anita]

Well, headache and dizziness is in a different league than a little increased dry mouth.  So I understand your comment.  However, Neurontin is one of those drugs where side-effects have a tendency to subside over time, so you may want to give it a little more time to see if it lessens. 

That is actually one of the more difficult aspects of taken this drug.  The side-effects come right away, but most patients still need to ramp up the dose for weeks, sometimes longer, to get to the proper level for them.  That just increases side-effects for some and they just can't wait out the period for them to subside (since the dose keeps increasing).

It will be interesting to hear what he has to say.  You hadn't even made it up to the dose where significant decrease in symptoms occurred. 

Keep us posted.

[Shadowlake]

Hi, I'm new to the board but I saw your post about Neurontin. I was first on 100 mg TID and that was for a long time. It never occurred to me to ask about an increase but when I finally did and began 300 TID I noticed quite a difference over time. I still have stiffness and soreness but the actual pain of everything has gone down and stayed down except for the occasional flare which nothing seems to touch. I wish you good luck with Neurontin and hope you give it a little time.

Shalom
Shadow

[LucyD]

Oh Elaine, I am sorry. Good luck.

[Carolina]

Ahh dearest Sjogren's Angels, and Angel Anita especially,

I just got up from a three hour nap.  Part of the Neurontin joys, I guess.

I slept from 8:30 am to 11:30 am, lots of weird dreaming.  And because I take two Pilocarpine in the morning, I had lots of drooling, and had to keep turning the pillow over!

It's interesting Shadow that I do 'feel' my stiffness and soreness 'more' since some of the neuropathic pain, tingling, burning and itching has receded.

It's as if when there is a lot of pain and misery, it all sort of blends together and nothing stands out.

Now it 'seems' like the stiffness and soreness (my osteo-arthritis) has increased, but it's just that I notice it more with the other 'noise' turned down a bit.

You are right Anita, it's still early days.   I'm not giving up, and I know this is something to get through.....to the other side which may be better, perhaps.

I'm going to go to the pool this afternoon, at least that's the plan.  Moving around always helps me.

Now I have to remember to take my noon time Neurontin.

And I am so glad I have you all to guide and support me.

Hugs,  Elaine

[warmwaters]

Sorry to hear it's not easy.  I didn't do well on my first bout on neurotonin, but things are getting to the point where I may be willing to try again. For me it was lightheadedness and grogginess.  I slept most of the time, and staggered around the rest of the time.

However, I was told that those things might get better with time.

Big hugs!

[Helene]

That was my experience with Neurontin and I think I also had dizziness. I felt that SS makes me feel bad enough, I didn't need any more symptoms. As I said before, Duloxetine helps me, but if I have more pain I take a Tramadol. Not ideal, but it helps.

[Carolina]

Well, Dearest Angels, I am going to 'tough' this one out.

I think I will need a higher dosage to get the effects I want, and I think that the worst of the side effects will disappear in time.

HOWEVER, I have been oh so wrong before.  And I have been Oh so Surprised before.  So as with everything in my life we are in the "trial and error' phase.

I do know I dislike adding another medication.  But actually this is a medication that I took (this class, not this particular medication ) for 5 years.  So I know that on the whole I can tolerate this medication.

I, too, also take Duloxetine, Helene.  It is my salvation, but I have often had medications turn on me.

Tramadol is one I can no longer take at all.  Alas.

What is happening now is that pain, which was rather a large mass of things all lumped together, is beginning to sort itself out as various types of pain.  And that is rather odd.

As the pains added over time, they rather lumped together.

Now I noticed my big toe hurting (arthritis), and my shoulder (arthritis) partially I think because the neuropathic pain is receding, leaving the arthritic pain, like flotsam and jetsam, on the shore.

So I notice some pains separately now.  How odd.  they aren't worse at all, but they are individual now instead of part of a lump of pain.

I imagine that this makes no sense at all.  Which is ok, of course.

I find my life very interesting to me, as it unfolds into the future, with something new every day.

Next week I have my fancy IVIG at Duke, next Wednesday.

I"m planning my trip to my 55th High School reunion, and another trip to the North West....this keeps me busy, as does maintaing two web sites, and other volunteer activities.

Life is good on the whole.

Hugs,  Elaine

[Carolina]

Isn't it just interesting!  Yesterday the headache and dizziness and profound sleepiness got me down.

Today the headache is gone, the dizziness is gone, and so is the sleepiness.

I went to the pool yesterday afternoon and did my personal version of water aerobics for about 30 minutes and it did wake me up!

And today most of the worst of the Neurontin side effects are gone, for NOW.

Upwards and onwards.

I do think I will need a higher dose to be rid of the tingling lips, mouth, face, etc.  But then I can put up with that, too.  It isn't the end of the world.

Hugs,  Elaine

to be continued

[Helene]

Wow! It sounds like it's working for you. If it continues, perhaps I will try a higher dose and more persistence at some time in the future too.

[Carolina]

Helene, I took other versions of anti seizures drugs for over 5 years, so I know I can do this.  I was just not loving the side effects of Neurontin, which seem to have come on at about day 3, and left at day 8.

So toughing it out hasn't been such a big deal!  And my Dr. did start me at a larger dose than many start at, so we could get a jump start on this.

It is such fun with a doctor trusts you, prescribes without yet another office visit, and so on.

What are your symptom, Helene?

Hugs,  Elaine

[Carolina]

Dearest Angels,  I could just hug my Neurologist:

HIS NOTE TO ME TODAY:

Wonderful! I would consider trying a higher dosage to 600 mg 3 X/day for a week or two just to see if it affords you any more relief.

Of course, if your satisfied at the current dosage and doing well from your perspective, you need not proceed with a higher dosage.

I told him I would go to 600mg 3xday.  YAY

YESTERDAY

Dear Dr. Peterson,

Neurontin update: 300mg 3xday

1. Headache gone, dizziness gone after the first week. Very good!
2. Tingling lips, tongue, face hands, finger, arms, still present, but not as severe perhaps. Pins and needles effect. Perhaps right hand is, in part, the carpal tunnel that hasn't been corrected.

Regards Elaine

[MichBlueEagle]

Hi Carolina,

Just to let you know I created a account just to reply to your Thread. I have been checking out Sjogrens World for a while now, and you convinced me to sign up. I have been a Sjogrens sufferer for a couple of years and diagnosed about a year ago.
 
I have been on Neurontin for about three weeks, same dose as you. When I initially started taking I had no endurance, lost upper body strength, felt light headed, could not stand for any period of time, and a rather odd forgetfulness sorta brain fog. The nurse encouraged me to stick it out, and for the most part I think I'm pretty straightened out. I also was prescribed Nortriptylin, which I think is the norm with nerve issues.

I have also just recently started Epidural back injections for my Neuropathy. I do have some back issues at L5-S1 so the thought was epidural for my feet and ankle nerve issues. I do not believe the epidurals are helping my feet and ankles, at least not after the first injection. 2nd injection is next week...

I have had two episodes recently of getting a feeling of my feet being on fire for a couple of hours. Than last night my feel were real cold and had to wear socks to bed. GEEZE really? its summer in Michigan!!....So I don't know if that's an Epidural issue, or if the nerve issues are getting worse? To top it off I'm now experiencing nerve prickling feel in my arms and hands.

Lastly I have a yet to be determined muscle issue going on, as my Rhuemy has tested my Adolase levels on 4 different occasions and its come back high. So he's told me I have some sort of muscle disease on top of the Sjogrens aches and pains. He said may even be a form of Muscular Dystrophy, or MS.... I need to see a Neurologist, but I'm going to wait to see what happens with this next Epidural. Anyway Best of luck to you!!

[quietdynamics]

Great that you were able to give a new med a trial.

I find it is often difficult (unless I have an immediate, overt reaction) to be sure a med is responsible for some adverse/days.. or for me is a warning of a pending flare and I need to back off.

Last few days with "temps/humidity" outside my comfort zone I have had dizziness and added fatigue/somnolence episodes. Added life stress in the mix takes a toll. No change in meds.
I was coming out of the tail end of more severe flare.

For those wondering about the doses mentioned here with Neurontin, some information:

neurontin-drug/clinical-pharmacology
Gabapentin bioavailability is not dose proportional; i.e., as dose is increased, bioavailability decreases. Bioavailability of gabapentin is approximately 60%, 47%, 34%, 33%, and 27% following 900, 1200, 2400, 3600, and 4800 mg/day given in 3 divided doses, respectively. Food has only a slight effect on the rate and extent of absorption of gabapentin

Gabapentin elimination half-life is 5 to 7 hours and is unaltered by dose or following multiple dosing.
http://www.rxlist.com/neurontin-drug/clinical-pharmacology.htm

Every so often I will still get tingling.. like a tuning fork.. when washing my hair in the shower, slight lip tingling, etc. I believe these are in tandem with a more active disease state.

One question which lurks in my mind:
Controlling pain, a clear signal that something is 'off' ... how much of progression is missed, new symptoms not apparent until severe? In life there are trade offs.
Sometimes I will say to DH, " I wonder if I weaned off everything .. what I would really experience?
Or does it matter at this point in medical abilities?

Diminishing, alleviating  one type of pain, yes, does bring the other types requiring different methods to the forefront. 
Sometimes we may think a med has stopped working.. it is possible if it is pain, that the cause, mechanism is new. And we need to be re-evaluated.

Wishing you continued success.