How long before I can start feeling better after IVIG?

[scarletnymph]

I was recently diagnosed with an Immune disorder and went through my first wound of IVIG treatment last Tuesday, March 8th. Though there was a minor allergic reaction, I have had a heahache everyday since and feel horrible. The Thursday after I got a migraine so bad I had to go to the ER where because I didn't present with the typical symptoms, they didn't fear Menengitis, but wanted to still watch for it. They gave me a cocktail of drugs to help and sent me home. I have felt so sick to my stomach, headache, chills, my throat hurts and I am so tired. We are over a week out now and I still feel terrible. Does anyone know how it will be before I feel better? And does this happen every time?

[Kimbo96]

I have Lyme disease, small fiber neuropathy. I just had my 3rd round of IVIG.  I get it every 6 weeks and it's ordered for 1 year. A week before this last round my pain was INTENSE. By the 3rd day of infusions bad headache, joint pain nausea and vomiting. I try to force fluids but difficult with n/v. My RN trying to see if I should get infused more frequently.

[Hope2017]

Did ivig help with neurapathy

[EmHell]

I have just had my first treatment 2 days ago for a rare autoimmune disorder/syndrome which is yet to be diagnosed, the disorder effects my peripheral nervous system, my muscles were so weak I could not even lift a mug or stand up from a chair, with constant numbness in my fingers and surface of skin on my legs! Have muscle wastage.
Already I am feeling the benefits of the immunoglobulin and the mere fact I could move my hair behind my ears and have enough strength to pick up my dressing gown and put it on myself is a miracle to me!! This product is precious to me and has probably saved my sanity and life! It has been a defining moment in my life, I am excited to finish my course and reap the benefits and stuff the itchy side effects and headaches because I am able to hold my little girl in my arms again and pull my own knickers up and regain some dignity in life!

[lak]

Can I ask why you take the ivig? I have low levels of igg and very low iga lived with chronic virial infections, sinus infections and upper respiratory.
I have these symptoms after I take it for three days at least. I am afraid to say anything for fear they may take me off of it and I really think it helps me.

[merrylc]

I agree on your simple treatment for the pain you described BUT I also have an intense burning, stinging underarms, chest, down spine, between legs and down inner/outer thighs to middle of calf.  I sometimes sleep with ice packs between my legs/pubic area because the heat is so intense. I am in Oklahoma and it is 17 degrees outside and 70 inside and I cannot sleep with anything other than a sheet on top of me as the heat builds and gets so intense that I sweat in these areas.  Got any ideas as to what is going on?

[kemlove]

I have had two weeks of severe back pain, headaches and consistently total body muscle cramps. I have tried everything, and in the past, I was even prescribed 100mg of morphine... What works is the simplest solution... 2 Benadryl tablets and 2 nsaid pills, like Tylenol or Motrin. Relief comes, but only lasts for 4-6 hours, but its true relief. I also make sure I am well hydrated and drink an electrolyte drink like emergen c everyday.

[StoneManor]

Hi, i just had my first IVIG five days ago. I uame accross your post because I was looking for some answers. I too suffer from neck and shoulder pain and I was wondering if you had the pain prior t the infusions. Mine has been going on for a year and a half now with no relief from physio, chiro, IMS, accupuncture, massage etc...

The day after my first infusion I had a really sore lower back which is not typical for me; yet, nobody can tell me if this is from the infusion or not.  On day two, I woke up with the worst migraine of my life and had to go to the ER to get it under control. Day four,  i stayed in bed all day with weakness and nausea and day five,  i am up, but very weak and shaky.

Any feedback that can be provided would be great

[Maya_33]

Its ok about the wait :) They stoped the IvIg for 3 months to see how I was going and I got worse so Im getting the IvIg again, and still have the neck pain even with the Steroids, Toradol and Dilaudid, it's when I get home its hurts and can get the pain under control for about 2 days :(

[scarletnymph]

Sorry for the long time in between here. I went through more IvIg but ended up with aseptic menengitis every time. Steroids and pain meds helped in getting it under control but we have had to stop the IvIg treatments for now. I told my doctor that I didn't think I could handle another one of those headaches.. it was the most pain I have ever been in.....he agreed. Even managed - running the risks of getting it every time was not an option. So we waited and he ran my levels after a little over a month and they were back down but not in the red. We waited another month and they were in the red... so..not sure right now. He said we are going to treat as it arises for now,,,, I am so sorry Maya_33 about your neck pain, you should be so very careful with a symptom like that.  

[Maya_33]

They should give you IV Bolus before and after, they gave me 500 cc of IV bolus and feel better, and sometimes they gave it to me after the IVIG so it makes me feel better, but right now my problem his my neck pain, it does really hurt :(

[scarletnymph]

I only go once a month right now and then we will see where my levels are. But I have such nausea. I am really hoping I don't get this with the next one. I will see my doctor soon to discuss pre-treatment and avoiding these side affects next time. I don't remember what meds they gave me at the ER. I'm glad to hear you are doing better and hope you continue to do so. I think a big issue was hydration for me. But I am still suffering headaches almost two weeks out....

[Maya_33]

I started IVIG last december and I had the same exact symptoms like you, I had to go to the ER 2 times that week and my IVIG his 5 days in a row every month, I was so sick I just wanted to give up, but my doctor cald a neurologist and he gave her a cocktail of meds to give me before the IVIG and its works for me, I have a headaches but not has bad, right now I on the IVIG treatment all week and tomorow his my last day :) At first they gave me some Sulomedrol IV 125 mg, Benadryl 50 mg IV, and after a IV bolus of normal saline of 250 cc, because you have to be well hydrated, and they gave me some Toradol 30 mg for pain, and Dilaudid 1mg for my neck pain, headache and backache. Right now I only have a back pain and stiff neck but Im not vomiting, the pain was so bad before I was up all night with nausea and vomiting, and I feel better about 3 days after the IVIG.  I really believe that if you had those pre meds it will work for you. What kind of med did they gave you at the ER????? If you have any question just right to me :)  And another thing that happens is I have a fever with that, but my neurologist told me to watch symtomes for aseptic menengitis :(

[Rondahonda]

Wow! Thank goodness I'm not the only one that had a horrible reaction after my first IVIG. My doctor told me I might have a headache but that would be all. I was very sick to my stomach, had chills and a fever, body aches all over, and I just wanted to die! I thought maybe I just had the flu. The second round was not as bad but severe headaches thought the whole treatment and for a couple weeks after. I have to have more like every month for 6 months. I'm a little scared but the doc seems to think it will help....