Hi Billye,

Yea - almost done! Assuming you want feedback????????

Started IVIG this time last year - at first felt worse (they hit you with a large dose to start with) - but then when frequency cut back has given me more "mental" energey (hard to explain except its a mind "kick") - more physical energy - and my doc says my legs are stronger... I havent had another NCS/EMG since I started to see if the PN has stopped progressing yet though......

For me - not a super huge diff but a difference - AND - I had to wait 6 years before I found a doc who offered it to me as a treatment.... I really believe if it had been started earlier some of the damage could have been stopped.....

Overall - a thumbs up...

What improvements did I notice/experience? Well after 14 months of 'diagnosing, I'd gotten my first IVIG [2 + years ago]. It was spread out over 4 days w/lower doses each day at a very slow infusion rate...Took 4-5 hours each day. Right after day TWO I went on my own and shopped at K-MART for 2 Hours! I felt so good! Not too many of the 'Uh-Oh! You've overdone it' paybacks either. I got my energy back, tho not completely -both physically and mentally. Remembered I still sometimes had an appetite.
More importantly, it kept the numbness that was beginning to start on my derrierre from moving up. My numbness is more severe at my extremeties and less closer to my 'trunk' so to speak. Its not gotten worse, even a teeny bit better, but it varies from day to day.
Now I have the infusions at home and it takes 2-2-1/2 hours each day - over 2 days. Same dose, just I can tolerate it at the rates they do it to me now on. As I feel soo much more able to do all kinds of errands, tasks and chores, I 'save' it all up to do on the days rite after infusions. I get 'run-down' for lack of a better word just prior to my next 'fix'. A week to 10 days prior. I get my infusions every 4 weeks - LIKE CLOCKWORK! and while I get 'tired' the days during and after infusions - I attribute that to the 3 benedryls I take to avoid reactions of the infusions [I was on combos of benedryl and tylenol, but now it's just LOTS of benedryl]. I sleep on infusion days and go forth on the days rite after.
I've had neuro office infusions, hospital infusions and now home infusions. Each has merits and demerits. A good deal depends on your initial infusions, which should be done in either a doc or hospital infusion center where the folks are super alert to any reactions you mite get that are of the 'NOT GOOD' kind. These are few and far between - I've only had one real Biggie in all my treatments. Most common are headaches [some are migraine-like], flu-like stuff [nausea, aches/pains, stiffness] and 'the runs'. I've met lots of folks in my docs and hospital infusion sites who ALL agree that the s/e's ARE WORTH IT compared to the benefits. All on it were getting it for MMN or ITP.

There are risks attached, but, compared to big doses of steroids [which I can't do due to osteo] or plasmapherisis [hier chance of infection] & well, it is kind of 'organic' in that it's a natural body product [altho 'processed']. You can't get it if you've had a flu shot in the last [?] 8 weeks prior to an infusion. Nor will you be able to get flu shots while on it. Not an issue while on it at all.

Most practical issues are: COSTs [once you meet your catastrophic deductible, it's no problem] - the timing of when claims are submitted and processed creates a muzzy land for payments of other medical visits and tests. Also whether your insurance considers it a 'medication' thru your prescription plan or a 'therapy/treatment' under your medical plan. Leave it to the docs and others to worry about it. All said, it is NOT CHEAP STUFF! Second is AVAILABILITY - it depends on your region and what allocations are available. It can take a couple/few months on a wait list to get it. Some docs can pull 'strings' to get it for you. Hope you have one! I KNOW I DID!
Don't let anyone, once you are 'in', tell you they don't have it, as it is usually pre-ordered and pre-certified for YOU about 2-3 weeks prior to your infusion. The only time I would EVER accept that line is IF the IVIG provider could DOCUMENT THAT MY ALLOCATION was used for someone w/a qualifying emergncy. Such lies are just that....usually lies.

It doesn't keep that super pain-free ness forever, like opiates, it seems the body can or does need more or increases in dose or frequency of doses over time. As I have said tho, I could NOT be Typing this were it not for the 'nanobots', as I call them. Hummm - 'organic nano-biology?'

Hopefully Kmeb will speak to this issue as well.

OK, this ends my biggish 'tutorial' on IVIG and it's pros and cons - If you are on Medicare, I'd consult w/Kmeb about the plans and issues in that set of Murkiness -only 'cause I'm not quite 'there' yet!

I know that feeling of 'homesickness', just the 'smell' of home, albeit somewhat abandoned is a soother to the heart and mind...not to mention your 'kids'!

Hugs and all super good things! That does include Chocolates! - j

The 'alert' bit? It's like you'e had a really good cuppa coffee or tea with none of the caffeine s/e's, the brain sort of goes into ACTIVE, really ACTIVE mode! - j

Hi again! Sorry message about IVIG was so short earlier - my gastroparesis gets the better of me sometimes (like today) but wanted to give you more info....

As Dahlek said - the mental kick is really great - I call it "my mind on IVIG".... when before I felt so exhuasted and sick all the time - I now want to try to do more and thus am pushing myself more (like hobbies ) and thats helping my physical strength to improve...... I can move around better - I havent had IVIG in about a month 'cause had surgery I've had a hard time getting my stomach back in gear for - and they dont like to do the infusion if you are already experiencing a potential side effect (which can be nausea - thats just my docs orders though).. 'without my infusions my legs are buzzing more, and I'm feeling weaker - so I'm missing it!

I get home infusions now every two weeks - last about 4 1/2 hours - nurse stays the whole time - premedicate with benadryl and tylenol - then tumble into bed when over.... Since I cant drive anymore getting them at home really helps - no worry getting back and forth to hospital (I had them done at hospital to start with) - I'm sure I'm getting the same brand every time (they deliever supplies and the medicine to me at home the day before) - and no time laying in a hospital bed waiting for medicine to be mixed... Also, it can be difficult to get a consistent brand in the hospital - but the home infusion companies seem to have an in on being sure that one does.....

As far as side effects - I had one when first starting infusions they were done in the hospital - had some trouble breathing - they stopped it for a while - then started again and I was ok... As mentioned, the problem I have now is pre-existing - because of my gastroparesis due too autonomic nueruopathy I have problems with nausea occasionally during the infusion - but they can start and stop it if necessary while you take meds to help. The only other side affects are really I think what lots of people feel - tired (partly from the pre-meds I think) the first day - but a definate increase in energy in the coming week....

Yes, there are risks but this product certainly seems lesser of evils....

The med is pricey.... I am on SSDI and when I got the infusions in the hospital was paid thru Medicare Part B - however - getting them at home (which again - is MUCH better for me anyway) - the nursing care is charged to Medicare and the prescrition for the med to Plan D - which means co-pays at first which can be high (the product I get is about $1,700.00 each infusion) but - you reach your "catatrosphic level very fast and then your set.....

Again, my nuero sees me every couple months for bloodwork and has been tsesting my leg strength - which he feels in improving...... we'll see if nerve damage progression has slowed down when quantative tests are done!

Take care girl, hope you got your chocolate

Hey Billye--I got your note and replied with a short note, so as not to tax you anymore. I'm well aware that the last one I sent, with abstracts about IVIG and Sjogren's/vasculitic neuropathy, was potentially overwhelming in your exhaustion. It was an attempt to send a pep talk!

There aren't that many people on this site who have gotten IVIG. I think you'd find that more folk on the CIDP sites have, as well as connective tissue disease sites. I don't know more folk than you do who have had it, but from my reading on the sites---it works. And that is what the literature is saying--it works.

Has anyone brought it up yet? Can you push to make sure they consult with Dr Dyck?

The Management of Sjogren's Syndrome

This Review discusses the currently available treatments for the glandular and extraglandular manifestations of this chronic autoimmune disorder, and describes potential future therapies.

Nat Clin Pract Rheumatol 2(5) 2006

….Neurologic Involvement
Peripheral neurologic involvement is considered to be quite common in patients with Sjögren's syndrome, but the presence of central nervous system involvement is a matter of debate, with descriptions ranging from 'undetectable' to 'quite common' and a variety of reported clinical manifestations, including multiple-sclerosis-like disease, stroke, transverse myelitis, or psychiatric manifestations. Therapy for central-nervous-system involvement is mainly empiric and anecdotal, including oral or intravenous pulse corticosteroids or cyclophosphamide. Other immunosuppressive drugs have been tested with varying success rates.[36]
Disease in the peripheral nervous system is commonly manifested as peripheral sensory neuropathy, mononeuritis multiplex, or pure sensory neuropathy. Treatment is mainly empiric, including plasmapheresis (efficacy of which might be the result of removal of circulating pathogenic antibodies) and concurrent use of immunosuppressive agents. Intravenous gammaglobulin, the anti-CD20 monoclonal antibody rituximab,[37, 38, 39] and mycophenolate mofetil might be beneficial as sole or adjuvant treatments.

Haven't heard from Billye today, but I called Rochester, Minn and she has checked out of the hotel, so I imagine we'll hear from her again if she has the energy AND an internet connection while enroute.

I do so hope that the trip was useful for her.

I had the IV's close to the beginning of PN. They were started in the hospital on a daily basis in 1993 and then gradually cut back. I am sorry, I cannot remember any more how the cuts were done, but it seems like I had them daily, then weekly, then every other week and from there I have just plain forgotten.

They did help me, although in the end, I had a severe reaction to them. I was falling down from the weakness in my lower body when I started them, skin would not heal, nails and hair would not grow, many flulike symptoms and much pain and other things I just can't recall. Most of these improved dramatically.

The reaction was rather strange. After I had the infusion, about 6-8 hours or so later, I began to burn all over. My doctor refused to order bloodwork to determine what the cause was and told me to either take them or not take them...

After reading some of what LizaJane posted about vasculitic neuropathy, I now wonder if could have had something to do with the severe burning, since I do have vasculitis. I was given Benadryl, which did nothing for the burning. With the help of pain medication, it gradually decreased to a much more tolerable level over a period of about 10 days.

I live in the same area as Billye, and have been pretty frustrated over the lack of continuity in medical care here. We share the same Neurologist, who is not a fan of IVIGG's-this is frustrating. Currently, I thought my Rheumie would give them to me, but he and the Neurologist throw me back and forth between them, and I guess the present opinion still remains that he would give them to me "if" I had a supporting diagnosis, which no one can agree on...

I felt they did benefit me and would take them again, IF I could ever get some kind of supporting diagnosis... Actually, I have been diagnosed with Sjogrens; this was questioned back and forth and I have no idea if I actually have it or not I certainly have the symptoms which I try my best to control pretty much on my own with Prednisone and pain medication adjustment-something a first year med student would most definitely frown upon...
Cathie
Mixed Connective Tissue Disease, Chronic Inflammatory Demyelinating Polyneuropathy and others...

A number of the neuro symptoms improved also on IVIGG's: numbness, tingling, the jerking of various limbs, strange sensations, one of which I believe is called L-Hermitte's (?) seen in MS, which I do not have and feels/sounds like a freight train shocking you in your spine...

My old Neurologist wanted me to go to Mayos several years ago-I did not for a couple of reasons: one, I had heard how some people were treated there and two: I had implants, which many of my doctors feel are responsible for my condition. The Clinic denies this connection in the many women suffering from similar problems...


Cathie

your way home - a good word BTW! Safely, and as comfortably as possible.
I am also SERIOUSLY hoping that some treatments/therapies...something has been suggested as a means of relief. You are one who is truly entitled to it!

Rest, recuperate and tell us ALL when you are ready. I've the impression you'd gotten a real series of tests, as in batteries? At time referred to as assaults! It is worth it all IF there are some answers and help.

Cathie, your reaction to infusions is unusual, but, I can only guess here.. from all I've read, tests for various anti-body allergies which go hand-in-hand with the actual anti-body titers are critical as to the TYPE of IVIG administered. I can only suspect that it wasn't checked as it was due to an emergency situation or the like. Certain IG sub-types can cause very serious reactions, but the improvements you mentioned after [aside from the initial s/e's ]are common. Some IVIG brands cannot/should not be given to some folks - all brands are NOT the same!
I'm confused when you say 'cut's tho, Do you mean a 'pic' line? I ask as I have mine infused thru a regular catheter [the type saline is given thru].

All I can guess about your experiences is that some docs didn't do their initial homework [like mine did], take all the proper pre-testing and got not only burned, but gun-shy as a result. THAT is a pity for all those in your region who could truly benefit from it. If you have copies of your blood and spinal work...I think I can find out which what's to look for/at. I hope this eases your mind a bit.

Billye, in the meantime, return, rest, recharge, then REPORT! PLEASE? - j