Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

557 Members
2,951 Posts
0 Online
Allergies & Immunity
/ Common Variable Immunodeficiency Support Group

Question

raleanne
raleanne



Is it normal to be sufferng from side effects 5 days after infusuions ?  I am feeling like this is enough already . I am on gammunex and I have cvid as well as IGA defieciency . I was premedicated with tylenol . For 5 days now I have not been able to function even with normal activities. I have had extreme fatigue and flu like symptoms , fever , headche , chills and rigors . Now my joints are going mad with pain , severe back pain last evening  and a headache and  feeling again fluish today with no energy   . When is enough enough?  I don't believe they changed the rate. It is still the same brand .  I have had more water intake than I usually do . I am frustrated . My question is do I talk to my doctor is is this normal ? Why so so bad this time ? I have taken one dose of Reactin for the last two days  , as this does almost feel like an allergic reaction . It helped somewhat . I did have to stop hizentra due to allergic reactions. Anyone have any suggestions . Is 5 days too much reaction time . I am suffering and want this over. I know there will be good days but waiting for them is hard .



Thanks   


laceyloo2
laceyloo2
You sound like you're having a suerum sickness reaction, could be a lot of things but you might need a few days of steroids to calm everything down. Do you not take premedication of benedryl and steroid? You might need to talk to your immuno doc about that to help with future reactions.
raleanne
raleanne
Thanks Lacyloo .. No my dr only pre medicates w tylenol . Is this different than an allergy? Should epinephrine be something a person should have on hand? Not sure I understand the difference between the two . I will research . I think I will report this to my doctor for the next treatment but maybe call him and he can prescribe something for now . Would be nice :) Thanks for your response.
No change at the moment . Just freezing as my temp has dropped below normal at 95.0
raleanne
raleanne
In my research premeds like benedryl and/ or steroids may help .
Zebrafan
Zebrafan
Hi Raleanne, I have had different reactions from the same infusion rate and brand in the past. My doctor has me pre-medicate with Zyrtec and Zantac 3 days prior and 3 days after. When I remember to do this, I do notice a difference. My husband reminded me the other day that the product we receive is a plasma product collected from donors and processed; not a medication, so each one might be a bit different.
raleanne
raleanne
Thanks Zebrafan. I understand what you are saying .
This last infusion was not good . Side effects continued a couple more days after I posted this and I have talked to the nurse . I will update again after my next infusion . Thanks everyone for your replies .
WriterWithoutWords
WriterWithoutWords
I had those same side effects when I first started my treatments after I was first diagnosed. I switched medications, I use Hizentra, Subcutaneously infused. Worst things from that are headaches, some stiffness on occasion and occasional fatigue. Maybe think about switching meds. Of course ask your doctor.
raleanne
raleanne
Thanks WWW . Yes, I also have stiffness . I was previously on Hizentra and taken off that due to reactions . Thanks for your reply.
Nova7
Nova7
I have side effects and feel like cr_p for 7 days after the infusion
raleanne
raleanne
An update .

I was changed to another brand , also had reactions . Pre meds have been started with Tylenol , benedryl iv and corticosteroid iv the day of treatment .
I followed it up with oral benedryl .
The day of treatment went much better and the side effects this time have been much more tolerable . Maybe some more tweaking to do , but this was much better than the previous two infusions . We will get there.
My 0verall health :
Apart from the side effects this has really been a lifesaver for me . I am very pleased with the results and benefits of Ivig and am so grateful . It has changed my life for the better .
Be patient to those who are starting that have side effects .. work closely with your doctors . They are great .
Posts You May Be Interested In
  • Mika09

    CVID patients: did IG-therapy help with fatigue?

    Posted by: Mika09
    Last Reply: raleanne
    3
    Anyone out here with CVID + fatigue who went on Ig-therapy? Did it improve or worsen your fatigue?I was recently diagnosed with CVID. My doctor offered me to start with life-long immunoglobulin therapy (IVIG or SCIG).I’m a bit hesitant wether or not to start. The thing is: the last few years I haven’t had a lot of respiratory infections. My main complaint is terrible chronic fatigue (>15...
  • Sheriann

    Bad Veins and Thinking of going SubQ

    Posted by: Sheriann
    Last Reply: raleanne
    4
    I have horrible veins and always have...in fact, I had a PICC Line because of them; in 2014, the line got infected and the infection went through a hole in my heart I didn't even know about, caused a brain aneursym and eventually a stroke.  So, needless to say, I'm a bit leery of PICC lines, Ports and such.  However, I now find myself in a situation of having to get IVIG Infusions every two...