[gooberoobu]

I just had a phersis treatment yesterday. This was my 13th one since August. The only side effect that i typically get is a rash that goes away after a few days... Until yesterday. The 2 hour drive home was so difficult. I was completely exhausted, short of breath (mildly), very weak, and nauseated. Twice i threw up and all evening i was run down. Do these sound like side effects to the treatment? Any body else that has had bad experiences? I have tried to search online for this, but havent had much success. Any thoughts?

[suev]

Are you feeling any better now? I sure hope so.

I really have no first hand experience - - but would caution you to watch for a temp in case you've contracted an infection from infusion center or wherever. Otherwise, maybe an allergic reaction??

[gooberoobu]

I am better. All that evening i had a fever and chills... Not sure what the deal was.... Allergic reaction was kinda what i was thinking too... I just dont want to have to give up the one treatment that works!

[AnnieB3]

Personally, I think you had an imbalance of fluids and electrolytes. When you have treatments like Plasma or IVIG, that balance can be upset. This is no simple thing and can be life threatening.

Do they do a chem panel after you have it?

If this happens again, consider it an emergency. It doesn't matter if it "passes" with time, during that time you have it, you can be at great risk.

For example, when someone has hypervolemia (too much fluid), you can get hypernatremia (not enough sodium). I've had that and it's horrid.

So the best thing is not to "guess" at it but go in and get your levels checked. Albumin can also be low after plasma. There are so many things that can be off balance!

It could also have been other things so, again, the best thing to do is to go in. I'm glad you feel better but they need to take the appropriate care of you next time! Tell the prescribing doctor about this and ask if they can check basic chemistries before you leave!

Annie

[gooberoobu]

Thanks soo much for all the info. The only lab they do is a H&H right before my treatment. It tends to be right around 35 each time. My blood pressure was slightly lower than normal 92/54, but not that low.

After my treatment they took one of the needles out of my arm, and they wrapped it well. As they took the second one out... We suddenly realized that i was bleeding from the first site. My shirt and pants were covered, as well as the bed and pillow case, which was dripping when the case was removes. The nurse also had splatters on her. Maybe this caused a fluid imbalance, or effected my bp, which they do not recheck when i am finished...?

So if i had them do labs after my treatment, should i wait for the results... What would they need to do if my labs were off?

is its too late to get labs drawn for my Tuesday treatment?

when you say go in... Do you mean now, or the symptoms happen the next time?

Sorry for all the questions! But thanks for your perspectives!

[AnnieB3]

I think it's great when people ask a lot of questions, though sometimes it makes doctors go batty.

By H & H, do you mean hemoglobin and hematocrit?

I wonder what your pulse was when your blood pressure went down. When there are changes in fluid status, it affects both the BP and pulse.

No, I don't mean go in right this minute. Sorry, I should've been more specific. If you are feeling awful, that's when you should go in. I might've said to turn your car around and go right back right after the treatment for an evaluation. They can't tell what's going on after it stops, only when it's happening.

The body tries to compensate for changes in fluids/electrolytes but it can't do it right away sometimes. I won't tell you my fluid horror story but just want to say that those changes can be very damaging to the body.

Are you on blood thinners? Just wondering. I have no idea how much blood you lost but if you were already short on fluids, it might've made a difference. Were you already feeling bad before they took the needles out?

In a hospital setting, they do labs fairly quickly; usually within an hour. If it meant better care, I would surely stay an hour longer. Talk to your doctor about it. These "episodes" should be taken seriously by everyone involved.

I'll give you one example of what they could do if labs are off. If they've taken off too many fluids, they can give you some. If they have overhydrated you, they can give you a dose of a diuretic. Or they could have you eat some celery, which is a natural diuretic. Of course, they wouldn't probably know that. And if those fluid changes caused an increase or decrease in electrolytes, they can give you those or balance those too.

When you are overhydrated, you can get hyponatremia (low sodium). That can cause agitation, dizziness, nausea, bradycardia and some even worse symptoms. For example, those who binge drink can get it and actually die. They drink too much fluid and dilute whatever sodium is in their body, making it way too low. The body can't catch up sometimes. So can marathon runners who drink too much fluid without the necessary electrolytes like sodium.

I'm not trying to scare you! But when new symptoms come up after what most doctors do NOT consider to be a routine procedure (plasma), you really have to let them know and get it checked out. Even when my Dad had his dialysis, which is basically the same sort of procedure, they were very careful about checking his albumin, etc. afterwards.

I have no way of knowing what went on to cause those symptoms. Please be your own advocate with symptoms in the future! Suffering isn't necessary!

Annie

[alice md]

I find it hard to believe that they let you go home and drive such a distance, after PLEX, without checking your blood pressure (which seemed to be on the low side to begin with), and your electrolytes.
Do they give you calcium tablets during the procedure? The citrate (used as an anticoagulant to avoid clotting of your blood inside the tubing and the machine) temporarily depletes your calcium. Some people are more sensitive to this than others, but it can rarely even lead to worsening of MG symptoms.
We give Tums routinely to all our patients.

[gooberoobu]

Wow guys, you have so much insight! Thanks!

Yes, the H&H is hemoglobin and hematocrit... just habit to type the nmemonic I use to order the test at work.

I am not on any blood thinners. As far as vitals, only when I first get there. The only time I see them doing it otherwise is when someone is having a reaction, but never after the treatment. I typically drive myself home, but had a driver which was a blessing!

The calcium. I have a calcium drip during the treatment. Without it I get alot of tingling and discomfort. It works beautifully. When the machine is sped up, they increase the rate of the calcium.

I obviously don't know what caused this, but I do not want to have a replay of this next time! This gives me alot of ideas to look in to. You haven't scared me, Annie, but you have made it clear that I can't ignore this.

Thanks so much!

Jennie