Back from the Neurologist
 

My husband and I went to "the" appointment today... unfortunately, my labs from Athena were not back. :mfr_wha: Therefore, he will call when he receives them.
He thinks that inflammation may be the cause (specifically Sjogrens) of my SFN but he also reminded me that I may very well fit into the 30%, or so, category that is ideopathic. He assured me that he would continue to test me periodically if I fall into this category.

He prescribed Mestinon to see if it helps with the autonomic neuropathy and also referred me to his 'mentor', Dr. James W. Russell at University of Maryland. Apparently, he specializes in autonomic neuropathy.

He mentioned the option of IVig. Something to think about - I know it has been helpful for some, but I am going to see how the Mestinon works and wait for my labs to see if they reveal anything. Does any one here have any knowledge or experience on Mestinon?

I have been quiet lately, not feeling good... but have been peeking in to see how you all are. :) My best to you...

Mere

From what I have read on our Myasthenia forum, it is best to start with a low dose and titrate up.

You might post your question there, for opinions, etc. It is a very nice forum.
http://neurotalk.psychcentral.com/fo...aysprune=&f=77

Some there have started as low as 15 or 30mg 3 or 4 times a day.
There are side effects, one of which is increase GI transit.

Thank you Mrs.D. He did say to start at half dosage every 12 hrs. My full dosage is 60 mg every 8 hrs., as needed.

The first drug they EVER put me on for neuropathy was Mestinon. They put me on that before they ran any significant testing....it didn't do anything for me. From Mestinon, they started me on my first course of IVIG.

Cyclelops, have you had any bad effects from the IVig infusions? How did they infuse you the first time? My doctor said that the first infusion is done over a four day period of time...

Mere

I've been 'infused' successfully for almost 7 years?
 

It was a decision I made [thanks to the 'web'] rather easily? My options were steroids [not likely as I was already on the 'line' for osteo]; plasmapheresis or IVIG. The IG seemed the least invasive and actually the most organic? [If you can call 'pasteurized/processed blood product' 'organic'?] Well, you get my point.
For initial IVIG infusions they do DO it in a hospital or approved outpatient setting. WHY? some folks really react! to some pieces of the IVIG product. Those reactions aren't nice, truly - but are rare. After two plus years at a hospital for infusions, I've had one very bad reaction IN a hospital but was 'released' and left to go home after that...The staff has since been 'retrained' as I complained to the State Hospital Board... I had aseptic meningitis -a whopper of a headache! But, that was only once out of several years of infusions! It was a badly prepared and stored 'batch' and there are ways to tell what's good or not.
I now have infusions at home and the meds are delivered the day before, and nurse comes the next two days. This is great, as I've got to pre-med w/lots of benedryl to prevent any other reactions and I am one dishrag after infusing, to a happy dishrag! I used to feel uncomfortable about a stranger in my house/home when being infused? But the nurse I got is a treasure! And I know I'm very lucky to have her! You must make your own decisions tho? Also what your insurance can LET you do is also critical...tho I've found home infusion about 60% costs of hosptial infusions? Well, what your insurance company allows? IS what you get? Ask your Neuro's office - they are GOOD at that kind of stuff and to get the paperwork all lined up like the ducks they should be! Hoping you give it a try? Praying it helps! We shouldn't have to hurt so much! - :hug::hug::hug::hug:'s and good luck to boot! - j

Thank you. I have been hurting and feeling ill for so long... Sometimes, I don't realize how bad I feel until I have a 'good' day and then it is just like a teaser because it does not last. I am still on the fence about IVig and have another option to exhaust (Mestinon). My neurologist said that he can prescribe IVig for me and arrange it so that my insurance will cover it (I will believe it when it happens).

It is very reassuring to me to know that you are out there and that I can ask you questions about it... May I ask what type, or what, has caused your neuropathy?

Thanks for writing Dahlek, and I hope you are feeling well. :hug: back to you,

Mere

P.S. I understand how you feel about steroids. I was on 20 mg per day for arthritis (a couple of years ago) and it made me feel manic and it also made me cushinoid. I am now on 3 mg (a very small dose) and it is an acceptable dosage to me, but I would be very reluctant to take any more than that.

OH my! Please if you are near, call me!
 

well, first e-mail me and then let's go from there?
I turned [eeeeekkkkk] 60 this summer while in rehab for a VERY BAD Osteo break.. The whole nine yards w/titanium and rods and pins and screws etc... Totally ickkky! It was NOT a FUN day by any means..
Osteo is something that Mrs D can be a whiz at, to degrees, but when I'd first had PN onset, I was put onpain pills [anti-seizure meds such as neurontin or lyrica] that literally suck calcium outta you. Ergo the first to show issues were my teeth to the comma behind the total dental bill sort. Next I was diagnosed w/ Breast Cancer and THOSE meds do an even worse # on the bones! So...I weaned myself off the 'pain' pills and gritted my teeth [which are still with me? Whew]
Thus before all this all above happened, I knew I was very borderline for osteo, and docs had been following me closely, [lucky to have not only good ones? but smart AND nice ones!] Soo the neuropathy was the 'only' issue then, but knowing I'd a family history of cancers and osteo's... My neuro suggested the IVIG, as I said..I concluded it's the most 'organic' of therapies...but! IT AIN'T CHEAP!!!
Here is a web site about costs.... half way down?
http://view.fffnews.com/?j=fe5915707...&WT.mc_id=&r=0
They are sponsors of IG LIVING magazine... http://www.igliving.com/
It's free to sign up? Its informative and it does have real live people to answer questions about WHY SHOULD I USE IVIG? and the like...they've been great for helping me on one occasion, and I've referred others to them and they've been beyond super!
All in all, it AIN'T CHEAP stuff, it's precious stuffs and for 40-60% of us it works! For me it does and I've a heap of immune issues that it addresses and helps keep me walking and plain old functioning!

:hug::hug::hug:'s in the interim... I'll try to plug you into good research? But I mite have to actually work at it, and w/infusions? To get updated stuffs. Plus 3 benedryl each of my next two days I'll definitely be a zombie of sorts. Never know tho?
Don't be scared about it? It's kind of interesting at first, and then? boring after that, esp. when taking heaps of benedryl!
In the meantime? Know that I view my infusions as being 'refueled' and I feel soo much better afterwords!
Hugs and hopes for you for the interim... - j

I have had very little bad effect from IVIG. They do a loading dose to start with, 4 infusions over 4 days. That is what seems popular here, in our area.

I have had 2 loading doses, since they started it a few years ago, then stopped for several years....tried IV steroids...(16 weeks....never, ever again...I swear it damaged me.)

I did puke one day during the second loading dose after they decided to resume IVIG when my ANA went way up, but they were running it in COLD and fast, a big no no....I tried to tell them but the home care agency nurse argued with me.

I get it in an infusion center now and they are very careful. It takes 2 and a half hours to get it done. Sometimes, some days, I feel a bit funky, but in general, I tolerate it pretty well.

I would give IVIG a try before any other stuff. It works with your body.

Thank you both Dahlek and Cyclelops for sharing your experiences about IVig. I thought I had been through quite a lot but you both have had your fair share! What a terrible situation with the osteo break Dahlek... I saw my rheumatologist yesterday and he was positive in support of trying the IVig. He did mention that it can cause anaphylaxis and the need for Benedryl. Thanks for the links, I will take a peek at them.

I still have not received any results from my neurologist on the labwork from Athena... It may not make a difference anyway if the results are inconclusive.

I don't know if I can afford the IVig. I no longer work because of my illness.

Hope you are having a "good" day and that we all get through all of the crummy weather soon!

Mere

Your insurance should cover IVIG. The cost is hideously prohibitive to pay for out of your own funds. Check to see if your provider covers it. They may make you go to an infusion center. Initially I was told I was denied, but I was only denied for home insurance....later I was denied all the way around, but fought it and got it.

I don't take the Benadryl due to my restless leg. I just premedicate with tylenol....period. One can have a reaction, because one never knows what is in each bag, since it is pooled antibodies....from thousands of people. (Don't think about that....I try not to.)

I am still having some disease advancement, but without IVIG, it would be much, much worse. Some people are lucky enough to have a total remission.

Affording it depends on your insurance[s].
 

For me this year the 'deductible' went up, as did the 'catastrophic' deductible, which used to be one and the same. Now they are different. I'd get things met w/my percent of the infusions about 20% and I'd met all deductibles for the year by FEB - IF they submitted claims properly and on time... but the infusion provider hasn't done well in that quarter for more than two years and it's getting both stressful and funny that the provider and the insurer can't talk it out about how to file claims right....as a result I've gotten some whopper bills from the provider that would scare your socks off! I dutifully call the insurer and the provider each time it's wrong [every month] and am promised that it'll be fixed [wrong each subsequent month] and It is getting down right silly. But...once the key deductible is met? You should be home free. As for getting things set up? It's the doc's office responsibility w/the diagnosis and filling out the insurance forms correctly...
All I know is that after my first 4 day infusion in the docs' offices [they no longer do that now] I went out and shopped for the first time in 15months! I walked and felt alive and didn't have too much pain afterwards, as I would have w/o the IVIG. WHO would have thought that walking thru Kmart would be a treat?
I did have a reaction from an infusion in the hospital? But I found out later that it wasn't the prescribed brand, it wasn't properly handled from the pharmacy to into me and my reaction wasn't properly attended to. After that I switched to the home infusions, which is where it's been only billing issues, not service issues or nurse issues- The latter two are GREAT!
One interesting thing I've found about getting IVIG? Is that I get a terrible attack of the 'munchies'-I am ravenous often after a really good infusion!
There are other side effects at times, that I won't go into, but go find out the BRAND and web up 'brand name prescribing information' and read all about the stuff! Sooo, if you get any side effect? you won't panic, you know that it IS a side effect. :hug::hug:'s And where is SILVERLADY [-billye] when we need her? She has the Sjogrens' and has been a great contibutor to this board in the past.... Billye? Are you out there? Hugs to all! - j:hug::hug::hug:'s

Mere,

Here is a good article on Sjogren's.

http://adisonline.com/aging/Fulltext...apeutic.3.aspx

It is long but really very accurate.

Thank You
 

Thanks for the info on IVIG and link on Sjograns. Also, the link on IVIG was interesting. My rheumatologist gave me some med to increase secretions (eww) called Evoxac. Although my antibodies are negative for Sjograns, it does seem to be helping the dryness...

I just called my insurance company and they said they will cover IVIG as long it is medically necessary (duh). If administered in a doctors office, it is the copay amount. If administered in an outpatient facility it is covered at 80% (after deductible is met). I would imagine at 20%, the cost may still be quite high, though I really do not have any idea of what it would be.

I would imagine that it would be done in an outpatient facility... my deductible has been met since January because our insurance requires a deductible for anything that is not a doctors appointment. Although, I feel fortunate to have insurance, this is the worse plan we have ever had and it is more expensive to boot... My husband works for a fortune 100 company and all of their senior management took huge bonuses this year and last year. The employees such as my husband have not had a pay increase for three years now. I guess he is just lucky to have a job. But you know, he has already put in over 30 years of hard work to this company and he never knows if his job is going to be there from one day to the next. IRIF's are like a flavor of the day. Welcome to the real world, huh?

Okay, I will get off of my soapbox. I do consider us as pretty fortunate. I just have to rant from time to time.

I am feeling lousy and that makes me feel so cranky.

Mere :nopity:

It can be $6,000 a month or more. In a hospital much more.

:I-Agree:

I understand this... sometimes it's the little things that mean so much. I would love to go shopping and not hurt or feel as though I need to pre-medicate.

Mere

I;m on IVIG loaded over 5 days in December and two days a month since then,, for me it hasent done a thing, my neuropathy just keeps getting worse,, I went to Gasto on Monday,, he said I have IBS even after telling him I have sensory neuropathy,, he assured me it was IBS,, and said drink a bottle of citrate and use more fiber,, went home drank the citrate and all that came out was this horrendous black stuff,,, I called him black,, now hes alarmed,, says I may have bleed somewhere,, and this was after telling him,, look sometimes when I go its tarry and black,, now I cant go at all,, thanks to the idiots I have for doctors,, seems like there just marching me down the road to eternity

I am very, very sorry to hear that IVig is not helping and that you are so ill... It certainly is frustrating to go through the testing and dealing with doctors... I hope you get some answers soon. It definitely sounds like you need some answers.

Mere

Well as I'd said? The hospital legally did 'substitutes'?
 

using a cheaper product, BUT charging the insurance CO for the higher priced product...which at the time was about $55 a gram? W/the cheaper product being about $10-15 less than the prescribed product...ergo? HOSPITAL PROFIT? NOT when I'd contacted the FDA and the state as they'd not contacted my neuro about the substitutions, which by law is a requirement? So they GOT A couple of $K w/e 'mistake'? Eh?
For me tho, I get to pay 20% of the bill, until meeting the deductable, so usually about $3-5K up front IF they present the bills properly to the ins. co and on time! Once you meet your catastrophic? {After 2 months if things are done right? [in my case not ever settled until JULY?]} You shouldn't have any major co-pays except for surgery or other funky surprise issues [And Ive had them all!] As long as your paperwork goes in w/o fuss? And comes out paid the same way? Go for it!
I've got to ask tho? The dose? Was it enuf? Go read the 'prescribing' info of the product and keep track of that dose! Lots of docs tend to be 'conservative' when agressive mite be the better option? Actions and reactions to infusions can also be aleviated by some preparations prior to infusion and diet tricks that should you get the 'flu like symptoms' can get you around it all.. I had NO HELP in this quarter? Just followed my nose and did common sense things, which I KNOW you would do anyhow!
It's worth a try, tho many don't get results rite away? That's either due to NOT enuf? Not the rite stuffs? Not long enuf? Or, the wrong condition. Thus a different treatment could be in order...or not.
It can get squirrelley! Hang in there - be forthright and PERSISTENT! And go for it! And may things WORK! So there! :hug::hug:'s - j