Need it too
 

Mrs. D,
I'm very interested in the mag product. I'm waiting for you to test it out. I've got a severe muscle spasm/tightening/whatever in one leg and hip. I've been using the Slo-Mag for some time. But your post mentioning the tense muscle really intrigued me. I'm hoping it helps you and you will let us know.

Billye

Melody, HOW is Alan's pain now?
 

that the possible s/e's and fact he'd been in the hospital have subsided? I'm a bit concerned if it's not working as you'd indicated that he'd still had the same pains and had to be massaged as you'd said in your posts yesterday.. If I were you, I'd convey these facts to the neuro[prescribing doc?] for further advice/doses or options?

I KNOW I'd felt a really, REALLY, rapid & good response after [my first hour] my first infusion. I was able to walk, mostly pain-free from the get go...I realize it doesn't 'take' on the first try some folks...depends on the blood work and spinals etc... Be aware tho, that my 'Walking abilities' had been limited exclusively to walking from doc office parking lot to doc office prior to IVIG... Now I can walk thru a 'small' grocery store with out multi-day payback. AND, continue to drive safely, a must in a suburb! One kind of like Northport or Southport on LI or Westchester, or Bergen Co in NJ....[used to live there] same kind of things.. only further apart]... Maybe I got lucky? Dunno.

Any word on what's the thinking on biopsy? Hey! Call me McFly or any breed of chicken about the whole concept! But, I won't cluck on command!

Thinking good thoughts till later - j

Xanax
 

Taking 2mg for sleep is a lot, and, unfortunately, because it's short-acting, it's a hard drug to stop. All the short acting benzos are hard to get off. Usually, people get off by switching to a long-acting one, like Klonopin, and tapering off that. Since it's not covered by your drug insurance, it would do you well to get off it, so you can get onto something covered, like Ambien.

But Mrs D is right, do it slowly. Not because you'll have something terrible happening if you stop all at once, mainly because it will be HARD for you. You'll have rebound problems with falling asleep if you stop quickly.

So just go down to 1.5 for a week, then 1.0, then ..75, then .5 and then off. But I'd suggest not changing the dose more often than once a week.

It should be pretty cheap as a generic, though, so you might find you can afford it if you want to stay on, or if you need to fill a prescription to get through the taper.

Also, I think Mrs D could be right on about the Mg. You might want to take a calcium/magnesium supplement-then you kill two birds with one stone!

And the nerve biopsy? Is that subject dropped?
I hope so.

Hang in there...

Hi Liza Jane:

Last night I only took 1 mg. I was prepared to take 1 and a half but I figured, go for it. I took it and no prolem. In about an hour I was fast asleep and dreamed all night that I was at a shower with people from General Hospital and instead of meals in front of our seat, on the table were little computers that turned into TV sets and they showed movies. I began a conversation with Anthony Geary of General Hospital.

It was the best dream I ever had. Woke up with no problem.

But today, with the weather being disgusting outside (going from warm to cold, to warm and very humid, I just out of it. Had some soup and salad for lunch. Went food shopping. Feel better. I'm not going to worry about the xanax. I'll taper off like you said. If I need to continue, I'll get it from drugstore.com. But honestly, I'd rather not be on a benzo than on one. I have to learn to cope with life rather than always be medicated. I mean, if I continue with the xanax, what happens as I go along. More xanax???

That's what happened to my mother in 1995. I never knew it but neighbors told me she was stealing xanax from everybody in her senior citizens community. I was told that a big problem among the elderly is depression and they drink and use xanax. Seems my mother was a big xanax user. I only found this out after she died. Amazing what one learns about family after they are gone.

Now as far as Alan's nerve biopsy idea, well, he read the postings and believe me, he is not jumping into anything. We are still waiting to hear from Dr. Goldfarb about when the home infusion thing is going.

Alan goes back to the gym tomorrow, he's chomping at the bit to exercise, (I just him "how's your pain leve" and he just said "too early to tell yet".

But he wants to exercise so that is always a good thing. In his case, it does wonders for his PN.

will update.

And how are you doing??????

mel

How's Alan doing
 

Hi Melody,

I was wondering how Alan is getting on since the IVIG.
Lupin

Alan is absolutely exhausted
 

He came home Sunday feeling fine. He said "I'm giving myself till wednesday, then I'll go back to the gym".

Since then, he acts like he has the stuffing knocked out of him if you get my drift. Apptetite is nomal, urine color is normal, no fever, no joint pain.

He is just tired. And as a matter of fact, the Empire discharge nurse just called us to see how he was doing and I said "well, he's exhausted, is this common with IVIG? I heard her tapping the computer, I knew she was looking it up (Honesly, I could do the same thing, but I figured, "Hey, I have a nurse on the phone, why not ask my questions, right??". So she looks it up and she mentions "does he have this side effect, does he have THAT side effect?" I simply said: "no, he's just tired". She said "Well I have given IVIG to many persons and some of them do get quite tired afterward. It's not a vey common reaction but it does happen"

She then asked me if we have a followup appointment with his doctor and I said "well, I put in a call with his neurologist today but so far no one has called me back"

So I guess we'll put in another call tomorrow. We also have to find out about home infusions.

So if any of you (if you can remember way back when you had your first round of infusions..... did it make you exhausted afterward AND FOR HOW LONG?????


thanks Lupin and thanks to anybody who can give me some info.

Melody

Side Affects
 

Melody,

My first rounds of IVIG I had 5, one every other day..... for the next two weeks I felt like I'd been run over by a truck..... also, blood work showed a drastic drop in whtie blood count (which is strange cause its supposed to do the opposite) but my doctor didnt seem too concerned.... when I started on once a week infusions the tiredness would last a couple of days, but mentally I felt a lift right away... and eventually they got easier to tolerate....

Again, IVIG affects everyone very differently - I'd call your doctor just to let him know whats going on.....:)

Thank you, Thank you, Thank you
 

At least I know this is not some unusual side effect.

He took a little nap. He ate a good dinner and he's sitting inside watching tv. He doesn't take long naps or anything like that. He just doesn't feel up to going to the gym and for HIM, that's really something.

When do they take blood after the first 5 rounds of IVIG??? No one has told us anything!!!!!

I'll call the neurologist tomorrow and hopefully they'll make a follow-up appointment for him.

Again thanks kmeb, hope you're doing good too!!!!

Mel

Ivig....
 

Hi again Melody,

My doctor orders blood work and requires me to see him every 3 months on the IVIG - but ordered it after the first rounds I think to see what effect it was having...... (I dont know if this is the standard - but bloodwork is essential because the IVIG can affect many aspects of your body)

My treatments are on hold right now 'cause I'm still having testing (which is taking forever) for amyloid - but I do notice my legs ache when they didnt while on the treatments....

Some people, like Dahlek had mentioned - notice an immediate improvement, others less, and of course- it may not help at all... as the patient you will probably notice it yourself if there is a change - and my neuro checks my strength etc. when he sees me........

ALso, sometimes the docs order the home nurses to take blood instead of you going to a lab - several times I've had to go to a lab anyway because by the time the shipping company picked up the blood and it was delievered - the blood had congealed and the results were skewed..... so I"d ask if your home agency does do the bloodwork how quickly they get it to the lab...

Tell Alan were thinking about him :)

Wow, I see where this is all headed. Going to labs, taking blood, home infusions. Never really had the whole picture.

Since Alan did the IVIG thing, like I indicated in my preivous post,he is tired. But today, he just got up and had his breakfast and will now go out and make a wash. I just asked him (it's 9:30 a.m. right now), I said: "Alan, compared to yesterday, are you a little bit LESS tired?" and he said "actually, yeah, I feel a bit better" So maybe this tired thing is weaning itself along and perhaps one day he'll go "I'm going to the gym".

I had hoped to get a part time job when the weather gets warmer. Now I have no clue if I could even get hired, but with all this home infusion thing, going to appointments, I dont' see how I can look into any part time work.

At least for now. OH welll, I can dream!!!

Melody