I was recently diagnosed with CVID after YEARS of illnesses and unnecessary surgiers probably caused by the CVID. I was told the most common side effect of it were IBS & arthritis. I have the arthritis bad some days manageable the rest. Rheumatoid DR. says he can't treat me yet because all meds supress immune system......
So here's my problem. 1. I seem to be EXHAUSTED like never before. None of my habits have changed. I am busy but manage to get about 7 hours of sleep a night. I am a single parent, 37, to a 5 yr old, work about 9 hours a day and attend school online (3/4 time) so that takes about 20 hours a week. I have very little help from anyone. I did NOT pay attention to when the fatigue started but it is dramatic. I don't know if it happened towards the end when I was due for an infusion. I SPECIFICALLY asked my DR. if CFS was associated with it and she said no??? The infusions WIPE me out. I get migraines (we kept the IV's pretty slow this time and the migraine didn't start till hours later) and sudden nausea. I had some Zofran which seems to help.
Is this normal? This diagnosis was supposed to be "life changing" for me. No more bronchitis, sinusitis, pneumonia and ear infections! Now I can barely do the dishes? Am I crazy? Am I imagnining the fatigue and feeling HORRIBLE after the infusions? They are working because I was around 6 sick people and didn't get sick. I'm trying to exercise for 30 minutes during my lunch hour 3x's per week, trying to quit smoking, etc.
Any advice would be GREATLY appreciated. I really don't want to be a horrible, sickly, always in bed mommy
The Following 2 Users Say Thank You to kelli1b For This Useful Post: Buddhapixie (07-04-2012), cleareye (09-08-2012)
I have immunoglobulin anemia as well as ITP, so I have had IVIG several times and I think it depends on the brand of IVIG you are getting and how your body reacts to it. The last time I had IVIG, it was pretty easy, and they pretreated me with Benedryl and Tylenol. Halfway through, I started to have trouble breathing so they gave me a shot of Decadron. I didn't feel bad after that infusion, but, years ago, I had a bad migraine afterwards and didn't feel great.
So I think it is natural for you to be wiped out alittle. Your body is fighting the little immunoglobulins now circulating in your blood - it has to adjust and rebuild, etc. It could be that you need to take some more medicine to help you through the few days after an infusion. Make sure to tell your dr - they may be able to help you tremendously. You should've have to suffer.
How often do you get the IVIG and how long does an infusion take? The longer it takes the better, according to the nurses in my hema's practice. If they rush it, you can feel really, really bad.
Also, they said it is easier if you eat some sugar and drink lots of water during the infusion. I did this last time and it might've helped.
I'm going for an infusion tomorrow, so I'll check back in and let you know how it goes. It's been 2 years since my last one.
The following user gives a hug of support to japlopper: messyjesse (11-16-2010)
So far I have to have them once a month, so I've had 2 now. I know before the first one my levels were half of normal but haven't heard the results of the last blood draw. I see my Dr. on the 13th.
During the first infusion they were trying to do it quicly and I felt it, started hurting deep in my bones, headach, etc....so they slowed it way down. I was up to 180 (I think) last time so it took about 3- 3 1/2 hours. The nurse said the infusions are full of sugar so I should drink lots of water so I'm going to try to do that the day before.
I'm not sure if the pain I was in was caused from that or standing in line for an hour but it was SEVERE.
Oh BTW, I too had ITP back in 2000 and had a splenectomy after the steroids didn't work. As it turns out, my DR. says I probably never needed the surgery that I very well could have been caused by the CVID.
How did your infusion go? Are you feeling ok? Thank you so much for replying
UPDATE: They might have to take me off the infusions It appears I'm having a reaction, a rash and I have dyshydrotic (dis-hi-draw-tic) Eczema which has BLOW up out of control. My dr. is going to treat the eczema and skin test the IVIG to see if I have a reation to the skin test. She has no reports of migraines, sudden nausea and arthritis 24 hours after infusion. So unless she reads it or hears it from another doctor, she's going to consider it a reaction. I feel better today but the rash is spreading. Say a prayer. It was the first time in 5 years that I have been around that many sick people and I DIDN'T get sick. I don't think the sub q has been approved for Kaiser yet but she did say she would check into it. This could be devastating if I don't get these. I will lose my job due to such frequent illnesses.....does anyone know of a website I can refer her to that shows people actually do get sick for a few days after? She said because I didn't have any symptoms DURING infusion, that the reaction didn't start till the next day IT IS NOT due to infusion rate. Period. I've read the other posts and will see if the nurses will agree to go slower...any suggested rates?
Sorry, I know I'm rambling...everyone else thinks I'm crazy, hypochondriac
I have not posted for a long time. I have been on gamma globulin for 3 years. I started with a brand that was not compatible to me, it was Octagam, which has a high ratio of IgA. I changed Dr. and found out I was having allergic reactions (hives and headaches to Octogam) I now take Gammagard SD made by Baxter.
Another thing to consider is try doing your infustions your self, sub-cutaeneously.
Thank you so much for the information. My doctor is going to do a skin test on me to see if I'm allergic to the IVIG's. She said if I show a positive reaction we can try to see if we can get another mfg or MAYBE the sub-q, she's not sure if it's available to Kaiser yet.
Thank you so much for the post. Any advise is always appreciated as I am so new to this.
I wish you the best,
The Following User Says Thank You to kelli1b For This Useful Post: cleareye (09-08-2012)
I was once in your shoes, quality of life is so important to me. I do sub-q once a week, it takes about an hour including getting needles placed. I would not go back to IV for nothing. When you do sub-q, you have a more consistent level of gamma in your blood.
You should never have a rapid infusion ever.......what brand are you being infused with? There are different levels........and yes Sub q is an option.
The Iga is a factor and also glycine base and Maltose vs Glucose sucrose base.... all of that needs to be looked at. Kaiser can order any IGIV they want too.
Here are some brands....
I am drawing a blank on the sub q brand name.
Gamunex made by Talecris
Flebogamma made by Grifols
Gammagard liquid made by Baxter
Gammagard SD (powder) made by Baxter
Privigen made by CSL
Carimune made by CSL
Octagam made by Octapharma
Also Gammastan IM Talecris
Gamma gobulin IM
Let me know if I can help in any way........ the infusion method is very important. Go onto one of these manufacturer's sites and read up or call their Medical affairs and they can answer questions for you.
Just so you know the Children's hopitals prefer Gamunex...you might look into that due to less reactions.
I found out tonight my doctor is taking me off the IVIG's. She said she read that 40 people had some sort of eczema reaction and SHE can't take the risk it will get worse. I begged her to try the IVIG's one more time, skin test all the brands on me first. She refused, said I can't even do the Sub-Q. I don't know what to do because it was working. I can handle eczema and feeling horrible for 3-4 days. She won't listen. My only hope is that my family doctor will treat me or send me to someone else. THEN she said "come in and get tested for HIV". I said WHY? You know whats wrong with me.
The kicker is, my bosses just got me protected under FMLA because I had a treatment plan. Now, no treatment plan, I don't know if I'm still protected. And the thing that gets me??? I've had eczema MY WHOLE LIFE. Yes, not to this extent but still. And she said the other symptoms, like everyone else who gets the IVIG's on here, is an allergic reaction because they didn't happen AT the time of the infusion??? I'm so lost. I'm a single mom with a 5 year old, and I just had her fathers rights terminated. What am I going to do?
I'm not a huge expert on CVID - I only got diagnosed a year ago - but from what I understand, you were probably so tired after the infusions because the antibodies were fighting a lot of tiny infections all over your body that you didn't even know you had. A lot of people with CVID say that the first few infusions actually can make you feel worse, and then you start feeling better in a few months to a year.
I get side effects with my infusions - chills, shivering, headache, fever, nausea, fatigue. How long they last depends on how many infusions I've had. The initial infusions are the worst, then the side effects get better. Last month was my first month back after a break of several months, and I felt bad for about three days, and then all month I just felt kind of low-level ill. But this month's infusion only left me feeling bad for two days, and by next month it'll probably be a lot easier if it goes the same way the first time did. Eventually, I only felt bad for a few hours after the infusion and was fine by the next day.
My other suggestion would be that the American version of the PIA, the Immune Deficiency Foundation has a number that doctors can call to get a second opinion or consult with experts in CVID and other Primary Immunodeficiencies. Here's the number: 877-666-0866. There's no charge for the consultation, so all your doctor will have to pay for is the call, unless it's toll free. Maybe if you can get your doc to call, they can give her advice on how better to handle your case, and, if you're really lucky, they'll convince her that there's a way you can have the IVIg back. Or maybe if you contact the IDF they can refer you to a doctor who won't be so afraid of working with you on your condition. Not to be overly skeptical, but it sounds to me like your doctor is out of her depth in this and is trying to make sure her assets are covered, so she's overreacting a bit. Maybe if she consults with other doctors, they can reassure her.
I don't know if it'll help much with your work situation, but you are protected under the Americans With Disabilities Act. Maybe you can look into that and see if you're entitled to some flexibility due to the nature of CVID. I would think you are.
You've got a tough situation going, with your little girl and all. My ex gave up his parental rights to our son, too, but I was already remarried at the time. I can imagine that, as a single mom, you'd be just about frantic. I'll keep good, happy thoughts for you that everything is going to work out OK.
Last edited by moderator2; 03-11-2009 at 08:11 PM.
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Thank you so much. I emailed my family doctor the phone number. Hopefully he will call. I also asked if having someone else treat me is an option. This is INSANE. So these are the things I asked the doctor who wouldn't treat me:
1. Can we have the infusions slowed down to a minimal rate -NO
2. Can we skin test every brand to check for a reaction - NO
3. Can we try a 3rd infusion to see if I get eczema again - NO
4. Can I try the sub-q injections - NO
My antibodies (sorry I don't know IGa's or IGg's) were at 250 before the 1st infusion and 526 after ONE infusion. I was sick as heck for 3 days after both, then totally fine AND did not get SICK. HELLO am I missing something?
Sorry if I'm repeating any info here. Most of my other posts were really scatterbrained.
THANK you so much for all input. I will keep everyone updated.
Last edited by Administrator; 01-05-2010 at 10:05 PM.
UPDATE: I found a doctor to treat me!!!! He's actually a leading HIV Dr. here in Kern County. He was perplexed when I told him I was pulled off of IVIG's by my last Dr. He is starting me on a lower dosage and working me up to max. He did say no to the sub-q, said they didn't work as well. I had to stalk Kaiser to get a result and finally get referred to a Dr. outside of their group. I hope no one else has gone thru this.
I'll keep ya updated as to how my infusion goes tomorrow. Thank you all again for everything.
Last edited by Administrator; 01-05-2010 at 10:06 PM.
I had Kaiser at one point....don't get me started...
I am one of those people who felt much worse after the first 2 IVIG infusions I had, and I was despondent that this wasn't going to help, but I since learned that yes, it kicks your immune system into gear and starts fighting those infections, and you feel worse until your body gets them under control. I just had my 8th IVIG infusion a week ago and this is the first time that I have really felt good afterward. It hasn't been bad for the last several months, but for some reason I've felt really good since I had this one done. I'm hoping this will continue.