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-   -   IVIG and achy veins (https://www.neurotalk.org/myasthenia-gravis/179312-ivig-achy-veins.html)

bny806 11-05-2012 05:42 PM

IVIG and achy veins
 
I am sitting here getting my IVIG infusion and man my veins just ACHE as it goes in.. it's been this way for months and months, but the nurse mentioned they have never heard anyone say that before.. my veins will be tender for days afterwards, sometimes longer.. (no blood clots - that's been checked before).. anyhow.. I was curious if anyone else gets this? I figured it was just harsh on my veins and they were irritated or something

StephC 11-05-2012 06:23 PM

I had my first ivig last week, 4 infusions. After first 2 they had to use another vein as the first location got too sore, swelled but within day of removing that iv needle that vein seemed fine. The second location was in my forearm and was tender but not achiness you describe.

No Issues while infusion being done other than soreness of iv needle itself. First iv was on sided of y wrist and that was best ever in terms of minimal pain!

AnnieB3 11-05-2012 06:29 PM

Have you ever had your c-reactive protein, ESR or Fibrinogen checked? Do you smoke? If you have "thick blood" from inflammation, that can cause vein - and artery - issues. What is your Pro-Time or INR? I'm assuming they've checked your D-Dimer but that doesn't show the whole picture.

It's also possible that you are having a mild, allergic reaction from the IVIG. Do you pre-medicate with Benadryl and then take some the following few days?

If you can, talk to your primary doctor about this.

Annie

bny806 11-05-2012 10:01 PM

Thanks yall- yea it's not infected or red or anything.. and it aches all the way up (the iv is usually in my hands or wrists),, and my veins ache all the way up to the armpit.. and can last for a good week or so..

I have had my crp, sed rate, d dimer, Fibrinogen etc all checked multiple times (always completely negatve/below normal).. and that is a good thought - the allergic one, as I get a rash from IVIG.. and defintely have an allergic reaction of some sort that is obvious,, but never considered it being in my veins too.. I took an extra benadryl today, so we'll see if that helps..

I do have a blood clotting problem, found after multiple miscarriages (homozygous mthfr c67tt)... I was on folic acid, a vitamin regimen and asprin.. until the found out I was toxic on B6 (from normal drug store B6- one a day) ugh! I wonder if that would cause any of this..

AnnieB3 11-05-2012 10:12 PM

Have they checked your homocysteine or methylmalonic acid?!

You also have to have folic acid (a separate supplement) at the same time as B12. I highly suggest methylcobalamin sublingual B12. If you take too much of one without the other, you get a deficiency of the other.

I'm sure you know that that little mutant can cause coronary artery disease, etc. I hope you get a cardiac evaluation from time to time!

What magical place in the body do you think allergic reactions start? ;) They can start anywhere. Once an allergen hits the skin, the respiratory tract, the sinuses, the blood, the gut . . . that reaction begins! And you should be cautious because they tend to get worse over time and it's hard to tell when they can get much worse. Be careful!

Annie

bny806 11-05-2012 10:28 PM

Thanks Annie... They did check those levels at the beginning of all of this (I was having major GI issues too, so they thought a vitamin deficiency was going to be found - they weren't expecting me to be toxic on B6- three times the normal level I think it was0 that was a long time ago).. The other levels were all normal with the exception of vitamin D being low.. I gotta get more sun! it ws then presumed I had celiac, as 3 family members have it, i've been strictly gluten free since!

I take 4 mg of folic acid a day too for the MTHFR.. I knew someone who was in great shape, 36 years old and had the same mutation (same homozygous "bad gene" the c67tt one) and he had had blood clots in his legs and lungs and a heart attack! ick! I always wonder if that could be tied back to my muscle issues!?

robocar 11-06-2012 08:28 AM

I also get achey about 2 hours into the infusion for no apparent reason. I bought "hotties" these disposable packs that hunters use to keep their hands warm. I put it over the infusion site and hold it in place with a bandage and it helps very much. When I get home I usually sit and watch TV with a heating pad on low around my arm and that feels really good. We cannot figure out why this happens so we just deal with the symptom. You can get "hotties" at Menards, Farm & Fleet or any home improvement store where outdoor people go.

bny806 11-06-2012 10:47 AM

Thanks so much robocar!!! I'll have to try that!!!

When I had my CT chest with IV contrast, it felt like acid going into my poor vein! i'd had contrast years ago and never had that sensation.. so i think the inside of my poor veins are just irritated, they feel "raw".. They are trying to extend out my ivig every 2-3 weeks, so i'm going to try and do the 3 weeks as much as I can to try to give my poor veins a break!

alice md 11-09-2012 04:10 AM

Some IVIG preparations are quite acidic and can definitely irritate your veins. It is a local chemical reaction. Like everything, some people are more sensitive to this than others.


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