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,
Kelli
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.
Phoenix
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.
Kelli
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.
-Rebecca
If the person that posted this is still out there - please let me know. I have experienced the exact same thing and would like someone to talk with! Sure hope you are.
If the person that posted this is still out there - please let me know. I have experienced the exact same thing and would like someone to talk with! Sure hope you are.
I am still here :-) I have come a long way and although I don't get as sick anymore, now I'm having rigors during IV's. Would be happy to talk with you
I am still here :-) I have come a long way and although I don't get as sick anymore, now I'm having rigors during IV's. Would be happy to talk with you
Oh, I am so happy!! Not that you are still sick, but that you are still "there"! I'll try to be as brief as possible - but still give some details. This is me (or more, WAS me in some respects). Mother of 7 daughters (only three left at home), 43 years, full time business analyst for the State of MN, avid runner (marathons mostly now) since I was 11 years old, outdoors person, watercolor painter, up at 4:30am to work from home until 7:30 - then drive into the Twin Cities, work a full day, come home, make supper, run if I didn't get it in over the noon hour, kept a spotless home for 25 years. October of 2008, ran Twin Cities marathon, time good enough for Boston - came down with a stiff neck, back ache and digestion problems that week after the marathon. COULD NOT recover. Ended up seeing doctors around January, in to have my gallbladder removed 2/05/09 - ended up in the hospital for 5 months. Pancreatitis, liver troubles - had two sphincter of Odi surgeries to keep me alive - incredibly malnurished - lost 35 pounds. Got out of hospital end of May, but continued to go in and out in the months preceding (was in again last week). By July of 09 they diagnosed me with Sjogrens, Lupus and RA. I have all the needed antibodies unfortunately - to make the diagnosis. Along with a low IGa. Started IVIG (Gammagaurd) monthly in October of 09, then went to every two weeks in December due to increasing neurological troubles (neuropathy, abnormal CSF - white blood cells present). I felt good after the IVIG - although I was getting flu like symptoms the day of and day after - mild headache. One time I came down with HORRIBLE hives and we slowed the treatment way down and added IV benadryl, tylenol and hydrocortisone 30 min prior to IV and this seemed to do the trick. I started noticing some serious brain fog issues. Not remembering things, thinking really slow - a couple of scary times of not remembering while driving.... Then they increased the IVIG to weekly. I did that for four weeks and NEVER GOT WELL. Horrible headache, back ache, eyesight fuzzy, nausea, and the brain fog got seriously bad. Last week I ended up back in the hospital through the ER because they thought I had menengitis. Turns out not - they could not find anything. But I was SICK AS A DOG! Five days later I'm back home and in bed all the time. I went to my neurologist this week and he dismissed it as "getting in the rut of being sick" -whatever that means. He did listen enough to call off my IVIG for this week. I am slowly getting more strength and not feeling like I have a miserable case of the flu. Lots of pain in my back. UGH!!!!
I was so happy to find this blog where people actually have somewhat of the same situation. What are you doing now for your treatment? Did you ever experience feeling "out of it". Like your reaction time is in slow motion?
This past year has changed my life completely. I am on long term disability - the state is holding my job for me, but I have NO idea when I will get back. I have become "sick Mommy in bed all the time" and the past month has been the worst. I totally feel it's from the IVIG, but that saddens me because it was helping. What else is out there?? I have a million questions but I won't overload you!! Thanks so much for anything you can post - it is greatly appreciated!!
Ok I was getting deathly ill. New doctor prescribed me a different brand of IVIG. I now use Caramune (spelling?). I still get flu like symptoms but much milder. I get them once a month on Fridays and Sunday by 6pm I'm out of bed (YEAH). I did start having rigors? Its like shaking like your cold but more severe, kinda scary but I guess not too dangerous. Here's what I would recommend: Change your brand of IVIG (Phlebogamma made me deathly ill, Carmanue is well tolerated), make sure they don't infuse you too quickly! Very important! I go max 150/hr.
HYDRATE! Before & after, very well (I buy Smart water with electrolytes a couple days before). Why are you getting them every week? Gosh that sounds like a LOT. IVIG has a 3 week half life. What that means is for me, I start feeling really bad and start getting sick my 4th week. We just upped my dosage to 24grams every 4 weeks to try to combat that. IF you keep having such bad reactions, you could request SCIG (subcutaneous). You stick the needles in yourself just under the skin, for a couple hours each time, 1 x per week. Keeps your levels up, less reactions.
Im so sorry you are going thru this. Everyone on here is WONDERFUL. We all have different experiences. Don't be hard on yourself. I'm still very new at this. What works for me may not work for you. Most of all, please be easy on yourself because it will get better! I'm a single mom (not a young one either lol) work for the VP of a large oil company and my daughter is only 6. We have NO help, she's been taking care of herself on those IV weekends. Contact me ANY time.
Last edited by moderator2; 02-26-2010 at 04:06 PM.
Gosh - I wish you lived down the street and I could run over for a cup of coffee! Thank you. Thank you so much. I can not believe how much it helps just to talk/write to another person about this - not a doctor or nurse. Sounds like we have a fairly similar personality type - which helps as well. I have never wanted to get involved in any kind of support group or "blog" thing - just because my LIFE has always remained more important to me than my illness. The last thing I want to do is commiserate all day long. But I tell you what - the past five weeks have really hit me hard. And I have been dealing with this stuff for 13+ months now. I seriously do NOT know how you are doing it alone. You must be one tough cookie!
I have a very supportive husband, seven amazingly supportive daughters and a small group of friends that just won't quit. Just this past December they put on a fundraiser for our family that will pay for our house payment for almost a YEAR! < edited >
Back to the health thing -
I really do not know why they upped my dosage so much. I didn't really realize it was that high until one of my infusion nurses (they come directly into my home and give me my infusions) commented about how she had never seen it so high. I get 40grams (rate of 150) every week. She said I was an insurance nightmare and better check to see what my lifetime max was! Makes me a little nervous - but I suppose I should call BCBS and find out! Anyway - I had an appointment on Thursday and they agreed to take a break from the IVIg and put me on a high dosage of steroids for a short amount of time. If I am indeed having a reaction this should help. If I am experiencing a lupus/sjogrens/ra flare of some type - this should help as well. I am VERY anti-steroid and have not taken them in the past when they have been suggested. For one, the one time I did take them I did not sleep for weeks and that just seemed to compound my issues. I seriously HATE taking medications or starting new medications. It just introduces new things in the mix and makes everything more complicated. SO...we will see. I started the steroids on Friday and I have to admit - I am feeling some better. I head back to the Dr. on Wednesday to find out some blood results and come up with a new plan. I'll let you know how it goes.
Thank you again so much for taking the time to respond. I means a great deal to me.
Take care!
Last edited by hb-mod; 02-22-2010 at 04:03 PM.
Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!
Make sure your infusions are run slowly. Almost all adverse reactions are due to rapid infusion rate. FYI St Jude's and most Children's hospitals use Gamunex for safety reasons. Also you may need a low Iga IGIV which is Gammagard SD.... Also you may want to try Gamastan IM injections instead if you have a mild form. Remember most home infusion or medical people purchase IGIV due to reimbursement issues. They buy the IGIV that they can make the most profit on after infusing......You can ask your Doctor for a specific brand or go to the Manufacturer.
Good luck and I hope you get feeling better. Oleander
CVID - IVIG's making me so sick! 
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?
