Jump to content

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


jenglynn

Recommended Posts

Oh so sorry, Jen, I posted before reaizing there was another page and reading your last post. I am really sad to hear that the infusions weren't working for you and that you are feeing so bad. I don't have advice (maybe others do), but I will keep you in my thoughts and prayers.

Link to comment
Share on other sites

thinking about you jen and hoping that the IVIG will help you in the end. it must be so hard to be in hospital during all those special days where you want to be with your family. but you need to be safe and hopefully once treatment will start working for you it was all worth it. not nice but worth it.

do know that you're dinet friends understand what you're going through and are thinking about you.

corina

Link to comment
Share on other sites

Jen I am so sorry to hear this.

I also left Mayo feeling like a frustrated pincushion.

Did they say how long you need to wait to see if IvIg is of benefit? I know it's variable, but that's something I would want to know. IE how long do you have to stay on infusions if they make you feel like garbage and don't help?

I would think it might take some time before seeing big effects.

I think you were right to stand up for yourself on the Mestinon. You know your body and heed to take things slow. What you went through on it sounded horrendous.

I remember lying in bed crying not understanding what was happening, my heart was racing uncontrollably, and they came in and told me I was anxious but since my ECG was normal everything was fine. I felt SO hurt and alone and scared.

Then more invasive tests were brought up and I could relate to what you said. I just felt DONE. You go through so much and it takes so much out of you that the thought of another test with a bunch of risk is just so overwhelming.

Take things at your pace. Ask you doctors for a plan of when you might go home or what criteria you need to fulfill before they let you and you can work toward that. If you don't want to ask get someone else to to avoid the stress. I find sticking up for yourself in the hospital setting SO exhausting.

Are there any other medication options? What is the plan if IVIg doesn't work? I'd want to know that.

Those are just my random thoughts, but this is hardest on YOU and you know best

Hang in there! We are here for you!

Ana

Link to comment
Share on other sites

Is it surprising they ramped you up so fast on the Mestinon? Seriously, everything I have read is that it takes weeks for someone to work up to full dosage and much fine tuning of the dose. With everything else going on it may not have been a fair trial of that medication. If you start much more slowly, perhaps it would work? That said my son tried it for almost 2 months and it didn't do anything, maybe made things worse but that is hard to say, nothing like you describe, though.

Link to comment
Share on other sites

Thank you everyone!!

I didn't realize that it took so long and fine tuning to get to the right dose of Mestonin. I thought about maybe trying it again and maybe giving up one of the other BP meds I am on... but after that experience I just don't think I will ever take it again. Even from the first dose I was given (and it was always given to me several hours apart from my other meds) it made me just feel "not right". As the dose continued to rise... my reaction just became more and more pronounced.

The amount of testing that one goes through at Mayo is exhausting. I don't want to complain because I feel fortunate that I live only an hour away from Rochester and there are many on this forum who would probably love to be able to go there... and I was "lucky" enough to be admitted inpatient via an emergency referral from my electrophysiologist.

I think like many of us... our emotions about these conditions is like a rollercoaster. There are days I feel positive and days I feel completely despondent. I am still in rehab. I had my first "weekly" treatment of IVIG today. So I have 10 more to go until I am done. I don't think that I have noticed a difference in any of my autonomic symtoms.. but there are some changes (I was going to put on a different thread). Now, I found out that I will be going home soon. After spending most of November and December in the hospital, and wanting nothing more than to go home because I am just so tired of being here...I want to be HOME... all of a sudden tonight I started feel nervous and a little fearful about going home. This is crazy to me but I am nervous. I will need to use a wheelchair and nothing has really changed... Most of the time I am pretty much bedbound but I am trying to become more independent.. I wish that I would have had a better improvement with my symptoms but maybe that will come with the IVIG after more treatments. Because we haven't received the results yet about the nature of my auto immune disorder they couldn't give me a clear answer on whether or not the IVIG would help my autonomic problems. I guess time will tell.

Link to comment
Share on other sites

Hi jen, I can't imagine being in that environment that long, you are a trooper. I hope you were able to read my earlier post in reply to your questions about your ivig infusions and what to do and ask, before your actual infusion. I wouldn't expect you would feel great during these initial treatments and the headache is very common. It's a heck of a headache though. You are on a real aggressive treatment plan, considering your rapid decline, it was the right course I think. I think their goal was to stop the progression, if that has happened then the ivig did work. As far as turning around the autonomic symptoms. Not counting the time I was on carimune(ivig), bad reaction to it. I've been on privigen a year and started noticing changes in my heart rate at around 9 months. I get the orthostatic hypertension, I pump out a lot of norepi, to compensate. I'm still getting some pretty high BP's, but my supine BP has improved. I used to get hypotensive in my sleep. We had first done plasmapheresis and my bp/hr normalized quickly during that. That is how we knew my issues are autoimmune in nature. I wasn't sure IVIG was working, because I'd expected the same response as the pheresis. It has taken longer but it is working. So, don't give up on it yet.

You were smart though to trust how you were feeing about the mesitonin. I think they thru the whole pie at you, which then makes it hard to tell what is really working and what isn't and whats causing unwanted side effects. If I have a say I try to introduce one thing at a time. Not, something that was in your control this time, but in the future.

You never mention family/friends! I'm praying you have a good support system around you when you go home. Hope you have someone that can stay with you! I think it is natural to be scared about handling all this at home, especially if your home alone. You are entiled to have home healthcare assistance, make sure the hospital arranges for it before they release you.

Stay in touch here and let us know how it goes. Here to help, just ask your questions and the members will do their best to point you in the right direction.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...