I am new to IVIG. I get it once monthly, and I have had two infusions so far.
How do you know if you need to switch brands? How many infusions does it take for this to become evident?
My IgG Subclasses and IgA levels have been low for at least four years. I am sure it will take quite some time for me to benefit from it. I do believe the infusion is causing me to herx. How do you know if you are herxing or if you need to change brands?
When treating tick-borne diseases there is so much going on "normally" that when something else is added it is hard to tell what is what.
Posted by sammy (Member # 13952) on :
Hi Sammi,
I'm not really sure how to tell when to change brands of IVIG. Do you feel like you are herxing strongly or do you feel like you are having a side effect? How long do the symptoms last after your infusion?
I started with Hizentra and had strong reactions with all 4 weekly doses of it. It gave me migraines, fluey symptoms, fevers, joint pain, large areas of redness and swelling at the sub-q sites. The symptoms lasted all week, they started to get better when I was due for my next infusion. Because of my severe reactions my doctor switched me from sub-q to IVIG and changed brands to Gammagard.
Gammagard used to be recommended for the lowest amount of IgA. Now Privigen is available, it has slightly less IgA than regular Gammagard. It may be an option for you to try if you are feeling horrible on Gammagard.
I wish that I lived close enough to see an LL immunologist. My local doctor has no experience with Lyme, does not understand why I am not better yet... it makes me upset. Makes me feel like I am a failure for not getting better. I'm trying so hard with everything I've got.
All I know is that having this immune deficiency has made my Lyme fight for life extra hard.
Hugs Sammi
Posted by Sammi (Member # 110) on :
sammy, thank you so much for your reply.
The truth is, I think I am herxing from the IVIG. I really was not prepared for this. I was prepared for the initial side effects, but this is really kicking my butt. I am on Gammagard also. Thanks for the link for the brands.
I totally agree about wishing to see a LL immunologist. The one I have here knows nothing about tick-borne diseases, so I cannot talk to him. It is really frustrating. I guess you learn as you go along. I just hope things will get easier over time. I may not have to worry about it though, because the infusion center is expecting me to pay almost $600 for each monthly infusion, and I cannot afford it.
I also agree that being immune deficient definitely makes treating these diseases much more challenging.
Posted by NEMOM (Member # 31370) on :
My dd has been doing IVIG for the last three years. She receives Gamunex.
She has always had some side effects/possible herxing after each infusion. She infusions on Friday and usually when she wakes up on Sunday morning she is sick with a fever, migraine, and nausea.
January of last year, they switched her to Privigen. They switched everyone in the office. She had a terrible time with the Privigen. The Nurses slow her drip down dramatically over several months to try stopping the reactions. We tried several things at home as well. Nothing helped.
They switched her back to Gamunex last month. She did SO much better.
When she initially started Ivig, it took several months for her side effects/herxing to calm down to a managable level.
If you are having a difficult time, be sure to mention it the Nurses the following month and ask them to slow the rate down or even try bumping it up at a slower pace. As I am sure you know-drinking plenty of water the day before and for a few days afterwards also makes a difference. Are you taking Tylenol or Advil and some sort of Antihistamine with the Immunogobulin?
Posted by Pocono Lyme (Member # 5939) on :
Hi Sammi,
It is difficult for me to remember how I reacted over time receiving IVIG. I've been getting GammaGard every four weeks since January 2011. Thanks to God and my new LLMD.
I was very ill when I started. I do remember feeling very tired afterwards and would have a fever, dizziness and lightheadedness.
I was told that it does take a very long time to really feel better as it doesn't build up for a long time.
I think the reaction may depend on how low the labs are? Mine were really low. I had been feeling better after the infusions for the first time just a few months ago.
My last labs I finally hit low normal. I just had an infusion on Tuesday and have been totally nonfunctional until yesterday afternoon?
For me anyway I feel like it is more of a herx.
For a bit of history, I have done heavy orals and IVs for years with a pretty low funcitoning immune system. I believe it was Dr. B. who said antibiotics won't get us into remission without a functioning immune system.
I have been off of antibiotics since April for various reasons and decided to only do IVIG. I have not backslid. I'm not well by any means but am much better than before IVIG.
It is not easy but hang in there.
Posted by sammy (Member # 13952) on :
Pocono, I'm curious, can you post what your IVIG dose is that you've been able to get off antibiotics and not relapse? It's not an antibiotic so we should be allowed.
I need to get off IV antibiotics and switch to orals but whenever we try I get so sick, end up relapsing in a matter of days and lose months of progress. It's depressing.
I think that it is because my IVIG dose is not high enough to sustain me. I get 35g twice monthly. ( total 70g per month)
Thanks!
Posted by Pocono Lyme (Member # 5939) on :
sammy, I get 24Gms every four weeks. It sounds like maybe you're dealing with a coinfection as opposed to lyme since you relapse within days.?
My reason for getting off of antibiotics is a bit of a long story so to make it short, I began having CHF symptoms, 4+ pitting edema BLE, shortness of breath, some palps..
All resolved within weeks of stopping antibiotics. I had been having strange reactions to the tetracyclines but this had to be the strangest.
Do you get your levels checked when you'd be at a trough level? I have found it to be interesting in that it correlated with how I've been feeling. It took about 18 months though.
How long have you been getting IVIG?
Posted by Littlesprout (Member # 7406) on :
I take Hizentra 2x a wk. I used to take gamma guard when I had a portacath. Went 2 yrs w/o til subQ Ins pays.under MS dx. It helps, can tell when it is time for one. I don't herx like I did wih IV stuff
The subQ 2x a wk helps keep levels more even w/o the spikes,drops
Posted by Sammi (Member # 110) on :
NEMOM, thanks for your response. I am also on Gamunex. I thought it was a different brand, but I checked my receipt.
I wonder why your daughter's doctor switched brands when she was doing well on Gamunex. I am sorry she had such a terrible reaction to it. I am sure it was very difficult because it took months before they switched her back.
Thank you for letting me know that she had months of herxing after she started. I don't know why, but I was not expecting to herx like this. I thought i would have a few days of side effects, but this is pretty intense.
The infusion rate was slowed down last time, and it definitely helped. Yes I stay very hydrated for several days, and I take Advil before the infusion.
Posted by Sammi (Member # 110) on :
Pocono Lyme, thanks for your reply. It is very helpful.
My labs are really low also. They have been for at least four years and possible longer. In this time, they were only in-range once. It is good to know that it takes a very long time to feel better and to build up. Hearing this makes me feel like my reaction is normal.
Congrats on getting normal levels! This is awesome. Your initial reaction sounds like mine, feeling pretty crummy for several days. I have also been treated very aggressively and am still symptomatic. I think my immune system has been off for a very long time.
I think it is great you have not gotten worse off the meds. I hope you continue to improve.
Posted by Sammi (Member # 110) on :
Littlesprout, thanks for your reply. I am sorry you had to stop for two years because of insurance. This is a crime. I very well may be in the same place if they expect me to pay almost $600 a month.
It is interesting that the SubQ does not cause a herx. I wonder if it is because it is done twice monthly instead of once a month?
Posted by Sammi (Member # 110) on :
Littlesprout, thanks for your reply. I am sorry you had to stop for two years because of insurance. This is a crime. I very well may be in the same place if they expect me to pay almost $600 a month.
It is interesting that the SubQ does not cause a herx. I wonder if it is because it is done twice monthly instead of once a month?
Posted by NEMOM (Member # 31370) on :
Do you also take some sort do antihistimane like Benadryl? Dd takes hydroxzine before infusions and that evening.
Posted by sammy (Member # 13952) on :
Sammi, what kind of ins do you have for the $600 out of pocket? For some reason I thought you were on Medicare? If so, you should be able to get your infusions at the hospital for no out of pocket cost.
Medicare part D covers your drug cost. Part A is hospital, Part B is outpatient/doctor's offices.
I get my IVIG at home so Medicare D covers the drug only. Nothing else is covered by Medicare. My secondary ins picks up the supplies, the IV pump, and the nursing visits. Because I have an extremely low income, the infusion company has kindly waived my copays. Without their help, I too would not be able to afford the copay each month.
Sammi, can you get your script transferred to the hospital or to an infusion home health company? You should be able to apply for financial assistance up front before you first appt with the nurse so you will know what your copay will be.
Also, most ins companies have an out of pocket max for in network doctors and facilities. Will you reach your limit soon? If so, you will not have to pay your copay any longer once you reach that limit. Your ins company will have to pick up all in network copays once you reach that limit.
If you don't feel comfortable posting about this here, email me, OK? Maybe we can brainstorm and figure something out.
Posted by sammy (Member # 13952) on :
If you want to try SubQ, it may be a cheaper option for you because you do this at home without a nurse. You only have to learn to do it once in the doctor's office or the infusion suite. It's very easy.
You can use Hizentra or Gammagard and most people infuse once weekly to keep trough levels up.
You can still probably herx with the SubQ IVIG but not as harshly. With SubQ you divide your monthly dose in 4. So you don't get that spike and crash. You still get the same dose of IVIG, just more steadily over the month.
Posted by susank (Member # 22150) on :
Sammy - there is a GammaGard SubQ? Same as the IV?
I thought the SubQ brands were the ones with higher IGA content.
FWIW I was scheduled for IVIG this past Wednesday. Got the call in the morning that the Gg had not come in. I don't know what happened. Problems getting it? Or someone forgot to order it? This is the second time this has happened. With all the arrangements I have to make to get to the clinic ie drivers - going the SubQ route is sounding a lot better to me.
Posted by sammy (Member # 13952) on :
Susan, Gammagard is approved for IV or SubQ use. It is the same product.
If I could tolerate the SubQ infusions, I would love the freedom of being able to do it myself weekly. Unfortunately, with the Ehler's Danlos syndrome I am not able to have SubQ infusions.
Posted by Sammi (Member # 110) on :
NEMOM, I can't take Benadryl because it makes me really wired. I have taken Zyrtek before the infusion, but I don't know if it really helped.
Posted by Sammi (Member # 110) on :
Thanks sammy. Blue Cross is my primary and Medicare is secondary. I do not have Part D.
I can't believe Medicare will not cover your supplies. I am so glad the infusion company has waived your co-pays, so you are able to continue your infusions.
I spoke with the infusion company last week and they are going to submit it to Medicare. I know it will likely take months to find out if they will pay. I really can't keep going if it costs almost $600 a month.
I also sent a letter to the infusion company with the name of the person I spoke to at Medicare (who said it would be covered) and the date and time. I don't think our plan has an out-of-pocket cap.
These diseases are exhausting in so many ways!
Posted by Sammi (Member # 110) on :
Thanks sammy. Blue Cross is my primary and Medicare is secondary. I do not have Part D.
I can't believe Medicare will not cover your supplies. I am so glad the infusion company has waived your co-pays, so you are able to continue your infusions.
I spoke with the infusion company last week and they are going to submit it to Medicare. I know it will likely take months to find out if they will pay. I really can't keep going if it costs almost $600 a month.
I also sent a letter to the infusion company with the name of the person I spoke to at Medicare (who said it would be covered) and the date and time. I don't think our plan has an out-of-pocket cap.
These diseases are exhausting in so many ways!
Posted by Sammi (Member # 110) on :
Thanks sammy, I appreciate your help. Blue Cross is my primary and Medicare is secondary. I do not have Part D.
I can't believe Medicare will not cover your supplies. I am so glad the infusion company has waived your co-pays, so you are able to continue your infusions.
I spoke with the infusion company last week and they are going to submit the bills to Medicare. I know it will likely take months to find out if they will pay. I really can't keep going if it costs almost $600 a month.
I also sent a letter to the infusion company with the name of the person I spoke to at Medicare (who said it would be covered) and the date and time. I don't think our plan has an out-of-pocket cap.
These diseases are exhausting in so many ways!
Posted by sammy (Member # 13952) on :
Sammi, I'm praying that this works out for you!
Your secondary ins should pick up whatever your primary doesn't pay. And now you know that Medicare will pay, what a relief!
The infusion company should have submitted the fees to both insurance companies for payment before they ask you for copay.
Sadly it may be easier (and more profitable) for the company to bill you so they may not bill Medicare initially. Or it may have been a simple mistake... Either way you have to watch for these things. I've learned from experience.
Posted by Sammi (Member # 110) on :
sammy, I don't yet know if Medicare will pay anything.
I spoke with the infusion company just last week. They told me intially that Medicare does not cover this. They are going to submit the bills.
I am concerned that I am not going to find out in time for my next infusion which is next week.