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Starting Ivig Treatment Inpatient At Mayo Tomorrow- Advice???


jenglynn

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I am currently inpatient at Mayo in Rochester as they try to figure out my true disorder, tonight I was told that I do have severe P.O.T.S and tested positive apparently for the autoimmune kind. I remember vaguely seeing a thread on this but not sure that I reviewed it.

I have three neurologists that I am working with and they all seem to tell me that IVIG is the best way for me to start to get better and that side effects are minimal. I am supposed to start tomorrow for 5 days while I am still inpatient and then once a week for another 11 weeks. I guess in my brain fog confusion I didn't really question the doctor and this is a doctor that I trust and believe has helped me a great deal in the three days I have been here. But now I am nervous. I have done very little research and now I wonder what I am getting into. Is this going to be dangerous? Could it make things worse?

I guess we will see how it goes tomorrow. I will be inpatient here until next Friday I believe so I should definitely have a good amount of testing to see how it makes me feel. I just hope this is the wonderful fix they predict it will be. They believe that I will get better much faster than I will without it. Anyone have this treatment at Mayo? Thanks so much!!

Jen

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I have never had IVIg but if you tested positive for autoantibodies it is definitely a reasonable treatment and has had much success. I haven't been tested for them.

It is possible to have an allergic reaction to it, like any injection, but they will watch you closely for that. I always wonder if mine is autoimmune and if IVIg would help but I have so many allergies I would be very afraid.

Do you know which autoantibody you tested positive for?

Mayo is pretty much one of THE POTS places. You are in good hands! But it's understandable to be scared.

Good Luck! It is GREAT that there is a treatment option! Keep us posted! Thinking of you!

Are you going to stay in Rochester for 11 weeks? If so, let me know, I found some great places to stay.

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Today was my first transfusion and it went pretty well. No allergic reaction but I did have a pretty nasty headache. Other than that, it was event free. Now, I can't feel any effect from it 9 hours later.

I am having the first 5 inpatient and then the other treatments in my home town in Wisconsin (about an hour away from Mayo). All I can say about the inpatient care here is that this is a pretty phenominal place and unlike any other medical facility I've visited.

Whether it was just in my mind or what.... I don't know... but today 6 hours after the transfusion I actually was able to stand for 2 minutes without syncope and BP was 78/57... which is low but for ME... not too bad. Heart rate was only in the low 130's. Typically I wouldn't be conscious after a minute... BP would be 40/20 with HR in the 180's +. ( example: day before on TTT at autonomic center- BP dropped from 100/80 HR 78 to 54/32 HR 153 within less than one minute of being upright on the table and had syncope before they got me lowered back down) I have also already had two PT rehab (inpatient) visits and one OT and I think their techniques have helped me quite a lot too.

So, all I can say is so far, so good. I was pretty scared of side effects but day 1 was quite uneventful. I will update again tomorrow. I feel pretty fortunate to be here, epecially inpatient, where I am getting ALL of the help I need all in one place at one time.

I am not sure about the antibody question. I will have to ask the neurologist about that. To be honest, I am not all that clear on the difference myself and need to research it some more. I am still new to the forum and the disease really (6 months in at this point) although the neuro believes I've had all my life to some degree. That is why I was a little skeptical about the treatment because I didn't really know anything about it... but my neuro was pretty adamant (in a nice, not pushy way) that we start right away because he feels that time is of the essence and I have to say that I really do trust him and Mayo so I went along with it even though I was hesitant. They do have some evidence of some organ shutdown so that is why he feels it needs to start immediately (thyroid, pituitary, and bladder so far) Lots of dysfunction in those areas and my condition has progressed so rapidly in the 6 months. I just pray that this isn't a decision that I made without enough information and will regret at a later date but I also think I am pretty desperate for answers and to feel better that I made a decision based more on emotional than anything else. Like I said, I hope I don't regret it.

Will update again after day 2 and see if I can get some more specifics.....

Jen

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I think you made the right decision! Glad to hear it went well!

From my limited understanding, autonomic neuropathy is one of the potential causes of POTS (one of MANY potential causes). There are different types of autonomic neuropathy one of which is autoimmune. There are many types of autoimmune but there are a few antibodies that they've sorted out and are able to test for. IVIg is used as treatment for a number of autoimmune disease including autonomic neuropathy. It's a newish treatment but has some promising data in the various conditions it's been used for.

Are you still on the cardiac unit? I was transferred around but really found them to be extra nice on the cardiac unit. They cared about my POTS symptoms; whereas, when I was on a general medicine ward, they dismissed them.

Keep us updated!

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Jen - see if you can find out which antibody? The one we keep hearing about is ganglionic acetylcholine antibody (α3-AChR Ab)? Glad you are doing a little better. I hope this works for you!! A few articles:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/

http://www.nejm.org/doi/full/10.1056/NEJM200009213431204

http://archneur.ama-assn.org/cgi/content/full/66/6/735

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Hi Jen, I've been getting IVIG for just over a year. I was diagnosed with an autoimmune small fiber autonomic neuropathy and hypogammaglobluinemia (causes you to not fight infection well). I had infections without robust fevers, so I would feel ill, but not present with the obvious signs of infection, until I was really sick. I didn't have the antibody you tested positive for, but the hypogamma qualifed me for the ivig any way. Dr. Grubb in toledo believes that they will continue to find more antibodies causing this, and that mayo had found 5 already. It is helping both issues though it took a while to show changes in my BP/HR. I have the hyper kind with excessive norephinephrine and high BP/HR on standing, as well as defects in all the other autonomic functions.

I believe your doctors are giving you the right treatment and you are where you should be right now, because of your rapid decline. Loss of urine or bowls is a sign that your in trouble. You must have an aggressive form and IVIG is FDA approved for what you have. They are also treating you aggressively right now with the infusion schedule your on, which in your case is the right thing. I'm getting it 2 days in a row once a month. At some point I expect that is where you will be, but it your frequency will be determined by how quickly your symptoms return. It may be every other, 2 wks, 3wks or if you do well longer. You will be able to tell when your body needs it and you will need to let the docs know how quickly your symptoms are returning, so they can tirate it to you. IVIG only stays in the body from 3-4 wks, before it needs to be replaced again. As you probably already realize you will probably need infusions for the rest of your life. Unless of course they come out with some newer treatment. They may also need to add in an immune suppressant of some type.

Now for the advice!

First, ask what brand of IVIG they are infusing you with. There are many brands and it may take more then one try to find the one that works best for you with the least side effects. I'm on privigen, but had a horrible time with the first one Carimune, as it had 2% glucose in it. Almost all those side effects went away after switching brands, though I haven't lost all the weight I gained.

2nd, Ask how fast they are infusing you. They should always start slow. I'm only at 150 speed right now after a year. Many of the side effects, terrible migraine headaches, aspectic menegitis, fluey, nuasea, etc are from the infusion rate being to high for you. Slower is always better until your body can handle faster. From what I understand you should stay under 200. I was under a 100 in the beginning.

They should also be giving something like iv decadron and benadryl to calm any reaction you might have. If you are prediabetic or prone to putting on the pounds, then you might be able to stop the decadron once you get used to the ivig, I'm only on benadryl now along with tylenol and I've been using either a pain patch called flector and/or a muscle relaxer when I get the migraines as they cause neck and cervical spasm. This month post infusion I haven't had the headache yet, but I have a couple of more days to go. I use tylenol or advil, zantac with benadryl at home to try to ward off the headache and ivig flu. Each month I'm getting better at figuring out what combo works best for me. Also hydrate as much as you can. Though in the hospital they probably have you on iv fluids. When you get home hydrate before, during and after. I've been using the smart water as it has electrolytes.

Also while you are in the hospital you have full immediate rights and access to your medical records including the doctors notes and lab results. As for them, the nurse can usually give you your labs upon request. If your mobile you can just go down to the medical records department and get copies of the notes. Read everything, it will be very enllightening to see what your doctors are documenting about your case. The knowledge will empower you.

If you have any other questions, just ask. I'll do my best to answer them from a patient perspective. I wish the best and pray that they got you to treatment in time to reverse the damage. Hang in there with the headaches and side effects, the long term improvements will be worth it.

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I've also been doing ivig for over a year now. I use privigen as well but infuse MUCH slower - 50ml/hr and sometimes even slower. When I started I also did 5 days in a row - 500mg/kg. Now it's every 4 weeks @ 500mg/kg as well. I did 400mg/kg for a while but had break through neuropathy and other symptoms so we upped the dose. I'm small though so I still only get a small amount - 25g. Anyway, I got a horrific headache that lasted a while after the 5 day course - it's a lot of ivig. Also make sure you build in rest time for a couple days post-infusion because it can really exhaust you. And make sure they are giving you saline with it - that can help with symptoms as well. I get 2 liters over the entire infusion.

Good luck!

ETA: I pre-medicate with 25mg of benadryl, 650mg tylenol and 30mg prednisone. I continue tylenol every 6 hours for a couple of days post-infusion to help w/ inflammation which can cause the headaches.

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maybe you can take it on rama, someone has to be first! docs in my country never tried octreotide on dysautonomia patients but i managed to convince my doc to go for it and with result! my doc later appologized for not offering it himself and was happy to have another treatment option for other patients ("though i haven't seen anyone as bad as you" :rolleyes: ).

hope you're on the up jenglynn!

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This has been interesting reading. I also have hypogammaglobulin and multicomplex immune deficiencies (with my POTS/OH/ANS failing). I am to start IV Ig and have been really nervous about headaches since it doesn't take much to push my bad headache into maigraine and fast. The Infectious Disease doctor's office has an infusion center where I presume it will be given. Do you think I should have a driver (he's a good hour's drive from where I live)? Will they treat your symptoms or pretreat you before giving (I have multiple drug allergies)? I just hate to have to ask someone to come and sit/wait on me for those treatments in the clinic.

Thank you for posting. I hope this makes you feel good enough to be able to at least enjoy the holidays. Best wishes being sent your way :)

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Hi, ruby, Yes you should have someone drive you the first few times, until you know how it will play out for you. I did have a reaction and loose my cookies the first time. The initial ivig (carimune) didn't agree with me. Once I switched to privigen it was like nite and day. Now I only get a mild headache and a bit achey like the flu for a few days. Really mild and well worth it, considering the consequences of not treating at all. Try not to treat the week of and before you menstrual cycle. Your people don't have to stay the whole time, at my infusion center many people are dropped off and picked up. With your diagnosis you really should be on ivig. Make sure they give a steriod like decadron and antihistamine like benedryl (premeds). The benedryl knocks you out so you sleep thru most of it. Also don't forget you may have the option of home health, where they come to your home. Depends on your insurance and where you live. I am switching over to home health in January, because of the drive and on me the benedryl burns when they do the iv injection.

I think though the infusion center is the best place until you get used to it, because they can manage any kind of reaction should you have one. Really though give it chance it does get easier as the months go buy, and pretty soon you will notice the boost it gives you and you will notice when it wears off. Also if you are still having a hard time with the first product they give after a few months, ask them to switch you to a different one. Privigen and gammagard are known to have less side effects. Also slow infusion rate to start, it takes longer, but it will be much easier on you. Good luck with all this. I know it is scary, but it will be worth it in the end.

Also there is a pretty good support forum at Daily strength, uncer CVID or common variable immune deficiency, another name for hypogamma. You might find some more specific support there.

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Arizona girl,

Thank you so much for the information. I have so many similar stomach issues as you (down to 89.4 lbs) with the constant nagging nausea. The Mestinon put it over the top and they did have to take me off of that but am increasing the Midodrine. I had to have a month-long infusion at home of DHE for status migranus going into third month. Not having a lot of 'fatty' tissue, wherever that subcutaneous needle was inserted, I got terrible cellulitis (and having tape/latex allergy that only made things worse with the skin). It's been almost 7 years ago, so I would have to have home health come in (you have to be homebound here to qualify and I pretty much am). The infusion companies will not deliver supplies without a home health care agency involved. The specialist that I saw Monday did tell me that I would have to be watched very closely during IV transfusions until such time that I could go on home infusion.

I'd just remembered from days yore when people had to be admitted to hospital to receive those infusions and how painful they said they were--requiring narcotic IV administration. Felt so bad for them and felt so blessed not to be in there shoes--never thought I'd be in this place. I guess that goes to show, one never knows. I still feel blessed as things could be so much worse.

I'm glad it is working well with you now and glad to know I will learn the feeling when the body needs more. Thank you for the support and I will check out Daily strenght, too.

Edited by corina
removed unnecessary quoting
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Well I have gi pain and motility issues, not so much nausea. I did drop to 96 pounds in the 1980's at the beginning of all this, but then steriods flared up the metabolic issues and I'm now in the 150s and trying to get the weight off from the carimune and decadron. Wish I was my skinny mini, I used to be, I'm short so 150 is alot. At your weight though you might benefit from the steriod gain, it would help with appetitie and weight gain too. That is way to thin for a grown women.

Well the ivig products have vastly improved since back in the day. They have removed the sucrose and a lot of the reactive stuff. Your in the USA right? The product here is very well screened. Carimune was known for side effects and kidney issues and it is being discontinued in favor of safer, better tolerated products. Aspectic menegitis is still possible if infusion rate is too fast, have them go really slow like ddsmom is doing. But, I don't think your going to experience what you witnessed in the past, things have changed for the better. But, your doc is right they will need to monitor you very closely and at your weight you might want to have them add some IV fluids and a stronger pain med then tylenol. Don't forget to hydrate a few days before, during and a few days after. Take extra benedryl and pain meds or what your doc prescribes for a few days after too. I also take zantac. You will be tired and fluey, so try and just rest for a few days during it. I don't get my headache sometimes until the 4th or 5th day post infusion. Remember some of this stuff lowers the BP and being horizonatal does too, so if you are already low, you might need to address that with your doctor too.

They do have the subq version of immunoglobulins, but you have to do it every week and stick yourself. Not something I want to do. You need to make sure that they use tape/latex free products when they infuse you, so you don't have that problem. Just be prepared if if doesn't go well in the beginning, they do know what to do and how to treat problems. What's that saying prepare for the worst, hope for the best. It will be a nice gift it you sail through.

Also, this type of infusion can be done in the home and can be less expensive then an infusion center. It shouldn't require you be home bound to get it, as there are companies that specialize in just this type of treatment in the home. My insurance Aetna actually, prefers home health, as it is cheaper for them. It does depend on your insurance though and where you live whether the service is available. An hour drive before and after these treatments is a lot, even on good infusion day. I have been driving myself though since the third month, 36 miles each way during the end of am rush hour. Not fun!

Well hope it goes well, let us know when you get your first one, so we can keep you in our prayers that day.

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Thank you, again, arizona girl. I know my ID and the specialist Monday mentioned that authorization from ins. would be no brainer for infusions (which will give me time to explore infusion companies in my network). Actually I had CT Scan at local (rural) hospital yesterday. They had to draw creat and put in saline lock for contrast. I told them I had Latex allergy and allergy to even paper tape but they had no other 'products'. He told me he'd try to do things as quickly as possible so that skin would not be exposed too long, and he minimized the tape as much as he could. Then I added that I'm a bleeder and he didn't have anything but cotton for me to hold/bend my arm while doing the remainder of the scan. I found on 30 day event monitor the monitor company who sent supplies (that was in-network that heart doctor arranged) did not carry any non-allergenic monitoring pads (got 2nd + 3rd deg burns with the itchy rash from that that discolored my skin and cropped up for months--even alternating with the few 'non-allergenic' ones the big city hospital slipped me when I had my TTT. Needless to say I end up with big long lasting skin issues that drive me insane.

I will let you know when I'm set up (will try to post how it goes if am up to it). I sure hate the thought of aggravating migraine (and possibly tossing the cookies). Thank you for keeping me in the prayers through this.

Edited by corina
removed unnecesssary quoting
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Hi Everyone!!

So sorry that it has been so long since I last updated. It has been quite the couple weeks. I went through the initial 5 days of IVIG treatments. They made me a little bit sick (I still kind of feel that way). The worst part was a really bad headache during the treatment. I have my first of the weekly ones (11 more to go) on Thursday. I wish I could say I could already see a big difference but at this point I don't notice anything different. I am still having the major OH and high heart rates and syncope. The only thing that has changed is that my BP is a little more elevated since I started the IVIG but it hasn't stopped the drops. I will still drop the same amount of points and my HR still rises the same... just from a higher level. Then they tried me on Mestonin when I was at Mayo and gradually increased the dose. From the first dose, it didn't feel right to me. I am not sure why. But by the time I was at my first dose of the full amount I felt bad immediately. I was breaking out in a horrible cold, clammy sweat. I was wearing my compressions (double- knee highs and then a full legging type over that) so I was freezing and my teeth were chattering. I became very irritable. Horrible headache and double vision. The nurse came in to do my orthostatics and lying down my BP was 190/140 my HR 54. My normal BP lying is 100/80 MAYBE on a good day but typically 90/70. Sitting it went to 140/110 HR 135.. Standing 100/70 with a HR 180. I felt AWFUL. Had all the symptoms like I was going to faint plus all of the side effects but I didn't. So the nurse tries to tell me what progress it was. To put it mildly I didn't agree. My body felt horrible. I was shivering uncontrollably and started hyperventilating. Instant migraine. I asked her to get the doctor ASAP. She tried to tell me AGAIN what progress this was because I didn't faint.. REALLY? I would rather faint and have it be over in a couple of minutes. This way I suffered for hours. I just curled up in a ball and sobbed hysterically for 20 minutes. 20 minutes later the doctor finally came in and had the same discussion. Progress, blah blah blah. I am already on 3 other medications that raise my blood pressure. This was just way too much. So he argued with me for some time until I finally convinced him to look at the actual vitals and tell me how it is okay that my blood pressure could plummet 90 points and a heart rate of 180??? Okay, maybe I didn't faint (but I had all the same pre-syncopal signs) but I felt worse than I ever did. Finally, he agreed that it was still orthostatic but not hypotensive. Eventually, against his advice I just said I wouldn't be taking that medicine any longer.

Emotionally, at this point I am just worn out. I was at Mayo until Christmas Eve. I was there a total of 12 days.. then I was transferred to an acute inpatient rehab center where I am right now. They did not feel I was safe to go home yet because of the syncope but I am at a loss. There is nothing they can really do for me here either. I am discouraged and tired of being in the hospital. Doing rehab and standing and all of these orthostatics.... the syncope... all of the tests I have been through... the infusions. All of it. I am just tired. I was in the hospital for Thanksgiving weekend. I was in the hospital for Christmas Eve and Christmas Day. I will still be here for New Years as well. Just frustrated and tired and tired of feeling awful.

That said, at least my time at Mayo was productive. I did get a diagnosis. They can't be sure that my Auto Immune Defeciency is related to my Autonomic Dysfunction Neuropathy... but I do have both.

I wish I knew more about what is going on but my brain has been in such a haze lately that I am hardly absorbing a thing. Any thoughts, suggestions, things I should be thinking about? Asking about? I guess I am feeling pretty frustrated to STILL be in the hospital- rehab- when there isn't anything they can do rehab wise to really change my condition... at least not in the short amount of time I can stay here. Mainly it is about being safe at home... but I am just so ready to go home. So that is my story. I had so many different tests at Mayo I can't even keep track of them all. I go back in about 4 weeks for a follow up with autonomic/neuro at Mayo. Maybe I can think of more things to ask and have a clearer picture. So because I have Autonomic Dysfunction Neuropathy and Autoimmune Disorder which may or may not be related... does that mean that I don't have P.O.T.S anymore? I really wish I would have been in a better state of mind upon discharge but I was an emotional mess. Any help and advice would be great. These weeks in the hospital are just getting to me. Thank you all for asking about me and keeping track of my progress.

Jen

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