[Lily]

Hi all,

I saw my Neurologist yesterday and as far as my worsening dystonic and hand tremors go he feels it could very well be due to my Epilim (seizure med which I have been using for neuro pain). It's not easy to get Neurontin here without jumping through a lot of hoops and rigmarole but he has started me on a low dose and we intend to go upwards to 1200mg if I can take it and during that time wean me off the Epilim. I have to see him in 6-8 weeks to see how I am tolerating it.

He isnt sure if Epilim is contributing to the worsening dystonia (esp in my neck) or if it's the disease doing that. If it doesnt improve we will indeed be doing botox injections as we have talked about so many times before but he wants to see what we are left with once the med problems are sorted.

Ironic that I should see him yesterday. This always happens to me that I see one specialist when I should be seeing the other because something else crops up. My parotid gland was swollen and painful yesterday, I thought the pain may have been from the jaw/ear/nerve pain I've been having off and on but when DD saw me she said it was swollen and yes it was!! She wanted me to take a photo of it but I will just tell the Immuno when I see him in 8 weeks. It seems to have gone down a bit today and I chewed my way through lots of sugarless gum yesterday hoping that might help :hehe:

What I want to know is why is it that I am fairly stable Lupus wise and then the stupid Sjogrens decides to up the anti on me :hissy:

I hope you are all doing as well as you can be :hugbetter:

love
Lily

 

[Maia]

Sounds like they have come up with a likely cause for the problem and that alone is something to cheer about sometimes! Let's hope the med change helps you significantly.

Keep on chewing that gum - maybe it will go away after 2 months of chewing

 

[Joandublin]

Dear Lily :hug:

Jeepers.... all one asks for sometimes is a break :worried:

I think there must be many times when we get to a stage where we just want to scream...STOP ALREADY...!

Sending you loads of empathic hugs :hug: :hug: :hug:

Joan:rose:

 

[confused1]

Dear Lily, Goodness .. if it's not one thing it's another. Seriously, it would be great if the med is causing your symptoms to be worse. That's fixable. I'm curious why Neurontin is so hard to get in your part of the world. They practically put it out in the candy dishes here. I'm down to two 600 mg doses a day now from four.

Hope things get better for you. It's about time for you to have a break.

Sunny

 

[Sage Hen]

Hi Lily,

I hope the Neurontin, is agreeable with you, and that it helps you. I love the med, myself. I hope you find out that the tremors were attributed to the Eplium, and not the Dystonia..

I hope your gland problem, resolves soon too! I always, think of you and wish the best for you..

Take Care Lily,
Sandy

 

[raggedyann1]

Lily,

I can see why you are so aggravated with these diseases. It never makes sense when one acts up and the other is well controlled. I love Neurontin and around here it is cheap. I only tolerate 600mg and that is only taken at night as it makes me too groggy. That one daily dose does a pretty good job with my Fibro pain in spite of the fact that it should be broken into 2 doses. What dose are you starting at? I was started at a 100mg dose but many others here are started at a 300mg dose.

Sending big gentle hugs and lots of love.

Take care,
karen

 

[Lily]

Thanks everyone I had a long snooze this afternoon after my trip to the docs but I still look a bit like a one sided chipmunk, it has gone down some though so that's good it's not particularly attractive I must say

Sunny, here you can get Neurontin for Epilepsy as long as you have tried other meds and they havent helped. For this purpose the government subsidises it and it is the normal price of other prescriptions, much less of course if you are on disability as I am.

However if it's used for neuropathy then even though it says that on the package and even though the drug guide that the docs have say it is close to being approved for that purpose they won't dispense it at a reduced rate. Well not unless you get it through the hospital pharmacy and the head of the Neuro department prescribes it Even he said it was silly and in order to get it I will have to go to the Neuro outpatient clinic, I cant even get it with the appt I had yesterday in the private suite which he consults in. It's crazy.

Karen he has started me on 100mg 3 x daily. The idea is to get up to 400mg 3 x daily if possible which according to my weight would be around the max dose for me for neuropathic pain control. I was finding I needed the 3 x daily with the Epilim too but I metabolise stuff fast I think so that's why.

So far so good but I've only taken two doses. I ended up getting this first script at the local chemist because the lower dosage one isnt anywhere near the price of the next lot of higher doses I will be on. So it's hardly worth another trip back to the city to the clinic. But I will have to try and tee up to go to the hospital clinic and see him for the next consult in 6-8 weeks time. I am hoping I can see both my docs that same day, that might be something of a miracle if I could but far better from a practical point of view if I can pull it off :hehe: Wish me luck.

:hug:

Lily

 

[BigSis]

Hi Lily
Thanks for the update. I was wondering how things were for you.

I was wondering if acid drops help with the parotid thing if gum does.
I know they help with a salivary gland blockage although it can be painful.

Just wondering..........please feel free to tell me not to be so daft.:hehe:

Good luck with the med change

 

[lin]

Lily funny you should say about the Epilim, my gp as writen to my neuro we dont know if its different seziers happening or what, but every now and again i'm getting not tremors but the hand and whole arm going ten to the dozen with my lips too.r/t side only.

but i find im putting to much weight on with it too. hope things do work out for you Lily big hugs Lin xxxxxxxx

 

[raggedyann1]

Lily,

I am glad you are starting on 100mg doses. I remember how sensitive you can be with some medications. I will pray you can get the neuro appt the same day as your immuno doc. I totally understand not wanting to drive into the city twice in a short period of time.

Take care,
Karen

 

[Lily]

Hi Bigsis,

No I don' think that's daft at all, it might just work and my jaw is getting tired just chewing this silly gum If it's not continuing to go down and I feel a bit better I might be able to get into town to get some. Not driving right now. I guess we can still get them here somewhere, I havent had them for decades, brings back memories

love
Lily

 

[Clare.T]

Hi Lily

I am sorry you have this new issue to deal with as well.
I hope the Neurontin will do the trick for the dystonia.
Fingers crossed that you can manage to get the two appointments on the same day

All the best

Clare

 

[keebler]

(((Lily))))

What a roller coaster ride you are having with everything.
I hope the new drug works out for you and going off the old one helps a lot!

Sending big soft gentle hugs.:hug::hug:

Love,
Lyn

 

[Pollyanna]

Hello Lily!

My goodness! I take a bit of a vacation away from these boards and just LOOK at yourself! Guess I'll never again be able to vacation without worrying about you!!!

Seriously though, so sorry to hear that you've been feeling poorly and I pray that things look better for you real soon.

Love, Pollyanna :love2:

 

[acard]

Lily,:hugbetter:
I sure do hope you can find relief with the neurontin. You certainly deserve a break from all of this! Keep posted on how you are doing.


Much Love,
Becca

 

[karen.w.]

:hugbetter: dear Lily

I wish I could give you a real-life hug!!!!!

I am so sorry you are having these awful problems :sad:

I hope you feel a lot better soon...fingers crossed :fingers: the neurontin helps & I hope your gland settles down soon.

sending you lot's of love & healing hug's :hug:
take good care..karen x
:love2:

 

[runnergirl]

Just some more ((((((((((cyberhugs)))))))))

Hope the meds work for you and things get sorted out.

I know what you mean by your jaw getting tired when you eat...mine does too, my dogs love me, they usually the get the rest of my dinner! :rotfl:

Keep us updated!

 

[Lily]

Thank-you, all of you :grouphug2:

My gland is barely swollen now, which is good, but weird :shrug:

Polly my twin that will teach you to take off and leave me here alone

I think I missed something when I saw him last Friday :worried:

The Neuro has contacted my GP and apparently I also have problems with my peroneal nerve, tibial nerve and femoral nerve so that is why my right leg has been.......... and is still........ giving me so much trouble. I tried the denial card and said you don't think it could be my scoliosis or something and the GP said, no it's your Lupus and it's affecting all those peripheral nerves Gimme a break........ denial was a much better place to be :lol:

One good note was that I got to educate another GP in training :woohoo: He was extremely interested as he hadnt heard much about Lupus and asked me lots of questions.

He ended up taking my bloods and the GP left me with him so we went through a lot of the first presenting symptoms most of us get and he wrote stuff down, also wrote down what meds I'm on etc. etc.

He said he was going to look it all up and thanked me. I said no........ thank you...............because if you ever get a patient with flitting joint pains, photosensitivity, mouth and nose ulcers, strange rashes esp one across nose and cheeks then think of Lupus as a possibility

So hopefully if he ever does come across one of us he won't just send them on their way. I explained how I didnt present typically, tests normal at first etc etc. and that it took a while to diagnose. He said it sounded like a pretty tricky disease to diagnose with symptoms coming and going and with each of us with a differening presentation, but that he won't forget our discussion if he can't work someone out k:

love
Lily