Ivig...again. This Time Not Going Great.

[dsdmom]

Was looking for some other experiences with ivig. I have previously done it for about 2 years - once every 4 weeks. I got into a routine with that where I would feel crappy for a couple days after but then was ok. We stopped for about a year for me to try another treatment that did not pan out. Then this summer an immunologist diagnosed me with CVID (low igg and igm) and suggested we start ivig again. We have been playing around with the dose and frequency to keep me from coming down with infections and right now we are at every 2 weeks. Well I had it on MOnday of this week and have had a really horrible week. Tons of pain, neuropathy, orthostatic issues worse, fatigue, etc... trying to find out if the batch was different than what I've used in the past but really trying to decide if I want to keep doing this. Talking about switching to the subq version but maybe my body isn't super excited about it this time around. The other thought I had was if the ivig is starting to do what it is supposed to and my immune system is suddenly recognizing all of the viruses I harbor and working away at them which is making me feel so icky.

Anybody have any thoughts?

[arizona girl]

Hi, Well I've now been on it about two years. Maybe I can help you figure it out. Brand alone can make a huge difference. I would need to know a few things though about how your getting it to trouble shoot for you. What brand now, what brand before. How much are you getting per infusion? How fast or what is the infusion rate? Are they giving you premeds?

I also had low igg and igm. I also have a few autoimmune diseases along with it and improved more once we added those treatments in. My infection rate dropped dramatically.

If you don't mind sharing a bit more about your symptoms and types of infections your getting, that would help too. This summer I pushed my infusion schedule around and ended up 6 weeks apart, by then I had another infection, which sometimes are hard to tell without getting a cbc with dif done. If you always feel like crap hard to tell if its just another crappier day or if you've got an infection on board. My fevers are very subpar. Well I got my infusion that time without knowing I had an infection, I had a rough couple of days, pain and aches like you get with a bad flu. So, yes I do think if your fighting something when you get your ivig, it goes to work and you get worse symptoms or side effect then usual. At least I did.

Hope that helps, a bit. Look forward to hearing back from you.

[dsdmom]

@arizona girl, thank you for replying.

I am on Privigen - always have been so no change there. We infuse REALLY slowly. 40ml/hr...so 6 hours for 20g really. Premedicate w/ prednisone, benadryl & tylenol. Plus I get 2 liters saline. Really we do it all. Pharmacist suggested we try gammunex but he was going to talk to my dr. She wants me to switch to subq (hizentra) but I need to get on medicare first before I can get that going.

How long did it take before you feel like your infection rate dramatically? And if you dont' mind sharing, do you know how low your igg was before you started?

Thanks!

[E Soskis]

I was on Privigen for about 2 years before it quit working. I switched to plasmapheresis (plasma exchanges) and have been doing that for about 3 years. I would not go back to IVIG ever again simply because by the time I quit, I was having increasing allergic responses to it. Immune globulin is difficult to obtain so, don't know if you can switch to another brand. The only type available in my area is Privigen. I would talk it over with your physician - he/she should know whether or not you are a candidate to ever return to IVIG usage or if you need a different treatment.

[arizona girl]

I'm so glad plasma is working for you E. It is funny though as I was on that first and I did have a very quick response of my autonomic bp/hr swinging calming down. I had a hard time with it for the long term, as I got and infection and anemia while doing it. I had an implanted catheter toggles hanging out of my chest for 4 months. I realize if I had stayed on it they would have done the port in my arm, which would require further surgery. Where I live it also required I go to a hospital, which also can expose you to infection from other sick people. IVIG for me was rough with the first brand they put me on. Once they switched brands it took longer to get symptom improvement then the plasma, but I have had improvement and appear to continue to improve with the addition of treatment for the 3 companion autoimmune diseases I have with it.

Thankfully, those are being treated with thyroid meds and plaquinel. To also answer DSDMOM Of course I'm getting the ivig for an immune deficiency not an autoimmune disease. I'm on 70 grms infused once a month. It is a bit higher as my neuro is also using it off label to treat the autoimmune small fiber neuropathy. I'd say my infection rate improved after the first six months to a year. I've only had 3 infections that were treated with rocephine shots since starting. My IGA was intact so I was not getting respiratory infections but was getting other types of bacterial and fungal infections. I still struggle with yeast as I have no resistance to it and ivig doesn't seem to help with that one.

My Igg was in the 150's and I had no IGM, those both are now just above the low normal range the day before I get my next infusion.

What kind of infections do you get?

[E Soskis]

It is so interesting how some treatments work for some but, not for others - we really have to find the best treatment specific for us. I also had central lines/perm caths sticking out of my chest for 3 years - until I got infected through them - I battled blood infections now for 3 months and have finally been given the "all clear" - I had a graft in my chest inserted (like the fistula that would be created in the arm) - called a "necklace graft" - it is working well so far - there just does not seem to be an easy solution to anything and every treatment has risks/benefits that we have to weigh carefully.

[arizona girl]

I hadn't heard of that necklace one. Was that rough to put in? Did you have the one in your arm first? Was kinda of wondering because if the ivig and my current treatment plan fails me adding plasma back in is one of the options. My neuro already offered that to me. If the plaquenil hadn't helped with the autoimmune stuff I might have had to go there already. My only other option would be imuran. Methotrexate is out because I'm homozygous mthfr. So my options are limited.

Those chest toggles were so hard to even take a shower with and they were so obvious I hated them. Then the infection and the anemia, I was relieved when the ivig became an option, however the carimune was brutal I gained weight had terrible headaches and reactions. I have pcos so the sucrose in it was like adding gasoline to a fire. Once we switched to privigen most of that went away but it still took a bit to see improvements in my autonomic symptoms. The weight didn't come off and that is when we found the hashi, and two skin biopsies showed I had lichen and a lupus like leasion. I'd had symptoms of all these auto's for years but either the antibodies weren't tested for or the ones that were positive weren't specific enough.

I'm so sorry you had to deal with the blood infections that is scary. I'm sorry I probably read somewhere what your getting your plasma for, why are you getting it? Yes, I agree with you we all come to dysautonomia from so many different sources, our treatment plans really do need to be unique to our own circumstances. We are lucky if we can find cause and not just be labeled idiopathic.

I'll keep you in my thoughts that there are no further infections now that the necklace is in place. BTW is that visible? How often are you getting your exchange?

[dsdmom]

@Arizona Girl,

I guess I am getting the ivig for 2 reasons - initally it was for (suspected) autoimmune autonomic neuropathy via my neurologist but now that they found low igg and igm the immunologist has taken over. When I was doing ivig before I felt like after a couple years it wasn't doing a whole lot anymore. Today was so incredibly hard - I really don't knwo waht is going on but my orthostatic issues were through the roof this morning. I defintely feel like the last infusion was not a good one. But who the heck knows. What brand are you on now and what were you on before?

My #s are not that bad so I don't know what i want to do. I don't feel like it's helping w/ my illnesses. I get a lot of sinus infections and I seem to catch everything that goes around. Seriously I am pretty much always sick. LIke will get over something for a day or two then will get something else. It really is wearing on me. But if the ivig isn't helping that I don't knwo that I want to continue. The only thing is that I have had pretty severe reatctions to almost all antibiotics so they are pretty mcuh off the table unless it's an emergency situation.

I have to say though that you are not the first person to tell me that it took them about 6 months - 1 year before they felt the ivig helped w/ infections, etc.

[arizona girl]

DSD,

Maybe you've just forgotten how rough the first few infusions can be. If you are getting infections so much you likely had something brewing during your infusion. Which as I now know can make for a rough infusion, as it starts going after those bugs. Infection alone can mess with your orthostatics. Also my reactions symptoms got better over time. Though we finally had to add some hydromorphone and/or diazepam to help with the headache or the tight neck. (the drugs never together) I get real dried out from the benedryl so I add in the active ingredient in mucinex to moistening things up. BTW a high dose of benedryl or the steriod they give you to control reaction can make your orthostatics rebound afterwards. I don't take the steriod anymore because of the pcos and only 25mg of benedryl now, along w/tylenol. So that is how I'm managing reaction now and it's going pretty good, infusion still slows me down for a few days though. Takes 5 days before I passed the possibility of getting the headache.

After reading what your telling me about your issues with antibiotics and frequent infections. I think it is wise your doctor put you back on. The whole point of ivig is to lower infection rate, to reduce the amount of antibiotics on board, so when you do need them they are effective. The more antibiotics used the less effective and for you sounds like you build up an allergy. Of course do keep an eye out that you aren't building an allergy to your privigen. If it seems to be more of an allergic reaction then your doc might be right to switch you, I've heard good things about gamma. They also might need to look at treating the reactiveness that is causing the allergic reactions. Maybe like how the mast cell group on here are doing. Also, have they used rocephine shots on you as an alternative to oral antibiotics? My gi track can't handle the orals because of my yeast resistance and the shots work as good as my iv antibiotics did. It also means you don't have to be on weeks of oral anti's. Usually one shot knocks out the infection, the most shots I had to have was 3 over two week period. We recheck my wbc a few days later and add another shot if it's still up, and so on. Then I have to go on diflucan because I always get the candida after anti's.

Have they checked your total immunos before and after infusion? Your levels might be higher then you think and two weeks apart may be two close together. Also with the amount of infections you are getting the standard 40 grams for cvid/hypogamma may not have been a strong enough dose for you, and why it seemed to be less effective over time. At the gentle strength cvid support group, this is a common complaint that, that dose isn't enough to keep infection down. The thought now is that a patient should be dosed at the amount that is effective for the indvidual, and the right amount is when the infection rate finally drops. I'm on 70 grms and started out with two of those a day apart in the beginning, we have reduced me down to the 70 at one day a month now.

That is so interesting that your neuro diagnosed the neuropathy, mine did the skin biopsy and found the small fiber damage, but I couldn't get ivig for that, thus the pheresis first. I also had severe hyperandrenergic dysautonomia. They found my low immunos later too, which then qualified me for ivig. I wasn't running fevers with my infections, even though I would have all the symptoms of infection and be hot to the touch. After the low immunos where found then we started checking my cbc w/diff, when I'd have symptoms and what do you know I'd have very high wbc and elevated neutros which point to bacterial infections. I'd been living like that since I was a kid and I'm very luck my IGA was still intact and my body could fight some of it off. As you well know any infection when you have cvid can be the one you can't fight off and then your on your way to the other side. It would be an interesting story to hear how your doc got it approved for the neuropathy, unless you with also positive for the mayo antibodies.

As for the sub q, on the Gentle Strength cvid group, many love it as there can be much less side effects and because you do it weekly it keeps your immuno's stable. The leader of the group had the sinus issues like you with constant infections and after switching she hasn't had any infections in a long time. So that may be a good option for you. I couldn't handle the idea of sticking myself once a week. Since my ivig schedule seems to be working for me, I'm sticking with it for now.

What neck of the woods are you in, as it sounds like you have a good neuro and immunologist. Both of those are hard to come by. What med did your neuro put you on that didn't work?

Hope my story and experience with this was helpful to you. It does help having someone to bounce things off of.