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View Full Version : Now they want to boost my immune system



serand4
10-14-2012, 08:42 AM
I went to the blood Dr. late last week and he wants to start me on this infusion of platlets (sp?) to boost the immunity in my blood. Apparently my immune system is very compromised at this moment (the numbers are really, really low). I wonder how this will affect the lupus since it's an auto immune disease. It's essentially a crap shoot but I get so sick and it last so long every Fall and Winter that I'm willing to try anything. Right now I'm afraid to go to Walmart just due to the germs!

Next week is all my neurological testing. I get everything, including a spinal tap. I'm a little nervous about that but it's time to take a look and see if I have MS rather than Lupus. You can't believe how hard it is to stand up these days. Half the time I fall back down! I took a terrible fall the other day and sprained my knee really bad. I had bruises all over my arms where I hit the ground and I guess I tried to catch myself. Unfortunately, this happens regularly so I just check for anything broken (because it hurts really bad!) and then slowly get up and limp away. You'd be amazed at how little people bother to help! I fell one time right next to our mailbox -- and I mean FELL! I stayed put for awhile because the pain was so accute and not one person offered help. Now I'm getting the equivalent to Life Alert. If you can't even count on help from a neighbor, you have to have someone!

Sorry, I got off topic. Anyway, I'm wondering how this will affect me overall. If anyone has had the IVIG infusions, please let me know how it affected you.

Thanks!

SleepyInSeattle
10-14-2012, 10:32 AM
I am sorry you're having all those tumbles, and I hope the new tests help find out what's going on so it can be treated. I don't understand how people could walk by somebody on the ground like that...human beings constantly confound me. You are wise to keep a cell phone or a Medic-Alert device with you.

I have not had them, but I do hear that IVIG can be very helpful for people with Lupus....I don't think it's as simple as "boosting" or "suppressing" the immune system - it's possible to boost certain PARTS of the immune system and not others - maybe that's what they're doing. I dunno - it's complicated. But I have read about using IVIG with a number of autoimmune diseases, so I don't think it's something that is contraindicated.

If you have concerns, definitely discuss them with your doctor!

Best of luck, and let us know how things go....and be careful out there!

magistramarla
10-14-2012, 01:23 PM
Serand,
I've had a spinal tap. It's really important to stay flat on your back for a while after to avoid a migraine-type headache.
I stayed on the couch the rest of the day with a few good movies. I was back to normal by the next day.
If you have the headache or the pain worsens or doesn't go away, it's very important to let your doc know, because there are things that they can do to help.

I fall a lot, too. My recent public one was when I was trying to get into my car. I had one leg in, and the one that I had my weight on gave out, so down I went. I had just left a cafe, and a lady who was sitting on the patio ran over to help me.
I fell in the kitchen this morning. I sneezed quite suddenly, and then sat down in the floor abruptly. My hubby rushed in and did just the right thing. He grabbed the step-stool/ladder combo and set it up next to me. I used it and his arm to get back on my feet.
I hate that "I've fallen and I can't get up" feeling!
I hope that the neuro tests give you some answers.
Hugs,
Marla

tgal
10-14-2012, 03:06 PM
Listen to Marla. STAY DOWN. I ended up in the hospital because if the headache and, while the actual procedure itself wasn't bad, the patch to fix it sucked! Hope you get the answers you are looking for

jmail
10-15-2012, 08:46 AM
I get IVIG infusions every 4 weeks for my CVID. IVIG is a blood product that has some immunoglobulin components that I don't make myself. Those components are the IgA, IgD, IgE, IgG and IgM, though IVIG doesn't have them all. IVIG can also be used to raise the platelet count from idiopathic thrombocytopenic purpura (ITP). Works great for me for both. You're not really boosting the immune system with it, but rather you're boosting the components that identify invaders to the body's systems, which allows the rest of the immune system to function better. The immunoglobulin components are what "bind" to the "invaders" to identify them as such. What's weird for me, is that having a compromised immune system, you'd think that there wouldn't be any AI inflammatory issues, but au contraire... Low immunoglobulin counts lets all manner of "baddies" to run rampant in your system. Since I've been on IVIG regularly (two years now), my incidence of contracting pneumonia has decreased (been over a year now since I've had it), and I don't arbitrarily get bronchitis everytime I catch a cold. It also "smooths out" the lupus somehow. The brain fog isn't nearly as bad, isn't constantly there, and only gets really bad during flares now (which still happens). IVIG doesn't "cure", doesn't eliminate symptoms, but it does help my body "fight the good fight".

Some of its disadvantages are possible allergic reactions, headache, etc., from the actual infusion, and then there's the problem of it skewing future blood work results, since you're artificially raising several levels in your blood. You also increase the risk of contracting blood-borne illnesses, but they screen donors better today, and the product is also "filtered". There is also the issue of cost. It usually run in the neighborhood of 10k-18.5k US dollars per treatment, dependant upon the situation, so insurance can really be an issue. It's definitely something to really discuss with all your doctors, and not just the one prescribing it.