sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Good news, insurance approved my weekly IVIG treatments! I'll be getting the first dose at an infusion center on thursday afternoon. If all goes well I'll be able to administer them myself at home from then on.
Any words of wisdom to share? Or encouragement?
I was told to take Tylenol and Benadryl 60min before my appt and drink lots of water to help prevent side effects. Anything else?
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am so happy for you! I hope this helps you turn the corner in your treatment.
Good luck! Please let us know how it goes on Thursday.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
Hope it goes well. Best of luck.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Congrats! What a big hurdle w/ the insurance!
Can I ask what you're doing IVIG for? I have neuropathy so I'm wondering if it will help me?
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, sammy, finally!!! Halleluliah! (sp?).
They are going to let you do it yourself after that??!! That's almost unheard of. Is that because you are a nurse?
Yes, the main things are to pre-medicate, and maybe to take the meds again at night, at least in the beginning, to head of any severe headaches, aseptic meningitis, etc.
Also, drink LOTS of fluids for the day before, the day of, and the next 3 days. The IVIG is processed a lot through the kidneys, so you need to have lots of fluids. And rest as much as you need to, of course.
And if you do have any side-effects that are bad, like severe headaches, stiff neck, etc., call your dr, and you might need to go to the ER. Hopefully, none of this will happen to you, but just to know in case. And take whatever pain meds you need to, if you do get a bad headache.
Did you get it for neuropathy finally, or immune problems---actually, it was for the CVID, right? That's usually a much lower dose, and usually less frequently than for neuropathy.
Keep us posted.
One other thing: how long of an infusion did the dr rx? And what is the dosage per kg? (I hope this is ok, since no dr is named---if not, PM me).
If by any chance, you get any side-effects, tell your dr, and he will likely rx the infusion over more hours to lessen or get rid of the SE's (like over 6 hours). If you need that, a pump is so much easier than being tied to a pole for that long. The infusion co can supply a pump, if you need it.
Onward and upward!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Rumigirl,
Thank you for the tips. My new neuro has RXd IVIG it for my MS/Lyme (he is not a LLMD but did put Lyme in the insurance request.)
The infusion company pharmacy (from CA) called me & questioned why I never did steroids since that's the first step in treating "MS" or why I didn't I ever do the "MS drugs".
Once I said LYME DISEASE she did the " oh, my bad, duh" for a response. It was great that it dawned on her the no-nos of using that stuff for anyone w/lyme.
I haven't heard yet if approved.
My doc is ordered an infusion over 5 days once a month for 6 months type schedule.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for the encouragement
I'll be getting the IVIG primarily to treat my immune deficiency (CVID). I was only recently diagnosed with this. My local immunologist is the one that prescribed the treatments and submitted the ins paperwork.
I also have severe problems with neuropathy so we're hoping it will help with that too. I don't have a local neurologist to talk with right now so I'm not sure how the dosages compare when treating primary immune deficiencies vs neuropathy conditions.
I'll be getting the IVIG infusions once per week instead of one dose per month. This is supposed to help keep the trough level steady. If all goes well tomorrow, then I'll be able to do the infusions myself at home from then on.
I hope and pray that everything goes well. I've not been feeling good at all. I already have a bad headache, body aches, nausea, chills, etc... And I don't have any pain medicine so if my symptoms get worse I'm not sure what I'll do. Probably just have to tough it out like I always do.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Did you read the thread about alka seltzer gold? Some people find it helps with herxing.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Sammy, it helped me immensely with neuropathy, but I did not see any improvement until I'd been on it for four straight months. It can take quite a long time to kick in for neuropathy, so don't lose hope.
Please do everything Rumigirl said, and even continue with Tylenol/ Ibuprophen and Benadryl for at least 24 if not 48 hours after the transfusion. Fluids are key; two days before and two days after!
If you get a reaction, don't lose heart. Most of us long term IVIG'ers have dealt with aseptic meningitis at least once. Don't quit! It's painful but not really harmful...pain meds, and it resolves. Also, I sometimes get a bad migraine afterward, but not always. I just had one after this last transfusion, but have had several rounds with no side effects at all. It's good to have some pain meds on hand in case, if you can do that. I just went through 6 days on Vicodin for a very bad post IVIG migraine...but thankfully, it didn't turn into aseptic meningitis.
You have to be a bit of a warrior to survive IVIG...you have to have a GREAT attitude, perservere, and know that these reactions are NOT abnormal at all. They pass, they hurt, they suck, but it's all for the greater good! You'll get a lot better with IVIG.
Key to avoiding reactions is having them infuse you slowly. Also, I could not handle the five days in a row, I got SEVERE aseptic meningitis after that deal. I know you aren't doing that, but for those who do...sometimes it's too much too fast.
For the first several months of IVIG I premedicated with IV hydrocortisone, not recommended with Lyme but I had very bad side effects in the beginning. Then they changed my brand and I did much better.
I hope it goes very smoothly, I'm excited you FINALLY have this going, and above all else, HANG TOUGH and stay with it! The benefits far outweigh the risks...I cannot tell you how amazing it is to live without neuropathy all the time! And for me with myasthenia gravis, without IVIG I end up in the hospital pretty quickly in very bad shape...so I'm a lifer.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Thanks for tips Tracy. I believe the neuro said the 5 day infusions is the one dose over 5 days.
After reading your post, I'm gonna make sure I heard that correctly and not assume anything. I'll be sure to ask lots of questions too.
Still haven't heard if insurance approved.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for your advice and encouragement.
I had my first infusion yesterday and it went well. I had great nurses (such a huge blessing!). No serious side effects.
Felt more tired, fluey, feverish, with a headache and body aches last night. This morning everything was much worse. I took a bunch of Tylenol, Benadryl, and Zofran and went back to bed for most of the day. Feeling a little better now.
I look forward to seeing how the IVIG helps me.
Thank you all for sharing your experiences so that I could know what to expect and not worry so much.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am glad it went well and that you had good nurses.
I hope you feel better tomorrow.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic