IVIG first time experiences/advice

[Nomad]

For a long time now, I've been on the precipice of getting IVIG and a decision for me not to get it is made at the 11th hour.
I'm a complicated patient.
I don't   have CVID, but I have a slight issue with reduced autoimmunity....can't recall the details this moment.
IVIG does help with reduced platelets usually (ITP) and would very likely help with any reduced immunity, so it's a fairly decent choice of tx for me especially lately.

Over the years, due to LUPUS and reduced platelets, I've taken soooo much prednisone, it caused retina damage to my left eye. So, I can no longer take prednisone unless it is an emergency. The eye doc would consider a tiny dosage though.

As a side note, I'm also prone to migraines.

For those who have done IVIG, what was your first TX like?
Do you take prednisone prior to treatment? How much?
When people say that they take their treatment slowly, how slowly are we talking about?
Is it hard to get a vein? Do any of you have a port?
What are your side effects in general?
Does it help at all with body aches and pains?

Any info. would be appreciated. Thank you.

[irish]

I have been on IVIG for 10 years and I have to tell you that most people spend a lot of time worrying about their treatment. I had 2 days in a row the first time. I get 80 grams each time and mine is given more slowly than usual at 6 1/2 hours each time. When I started out I was at 80 grams in 800 ml fluid at 5 1/2 hours. I had a little trouble with some usual symptoms which were relieved by slowing the infusion down. I am 10 years older and I think that my body wanted it to go slower. So far so good.

There is not much  you can do except be sure to drink enough fluid I the 2 days prior to infusion. Ask them to make sure that you don't get it too fast as sometimes people will feel edgy and uneasy and get a headache if it is too fast. The nurses are good about listening and answering questions.

I get a Tylenol, benedryl and IV hydrocortisone prior to my infusion. This is pretty standard around the country and it is given to help your body accept the infusion without any issues. There are some people who have issues but it is amazing how many people are getting infusions and doing so well. I had my infusion today and I usually take a nap in the morning in my recliner at the infusion center plus often talk with staff off and on when they have a moment--they are busy much of the time.

The center provides pop, potato chips, small bag---a very  protein bars and coffee. Enough to keep us from starving if we forget a lunch. sort o visit with other patients many days as we sort of get to know some of them. This is an infusion center that is quite large and busy. Today they had 15+ patients and I helped them decide where they would put the new recliners they are getting because they are enlarging again. Way too many people with autoimmune disease. They don't do any chemo here for cancer patients. Give only IVIG and some IV drugs that treat autoimmune patients.

You will need to make sure to take Tylenol when you get home to help with any flu type symptoms that you get -- a very common complaint after IVIG. Sort of achy, headache, etc. Also, make sure to drink plenty of fluids to help keep hydrated as too little fluid intake can cause a person to get a bad headache. Don't worry about it just drink and you will do well. Some people feel a little off for a few days. I am always pooped for about 3-4 days after my IVIG but I just hunker down and rest and don't make excuses. Most people have good results fro IVIG and I feel so lucky to be able to get it. Good luck. Any questions ask docs and nurses. Irish

[keelton]

Just curious what IVIG helps with as far as symptoms go?  Does it help with mouth and eye dryness?  I just found out I have low IgG and IGA as well as undiagnosed sjogrens and wondering if it would help me. 

[SjoDry]

I do have CVID and give myself sub-Q infusions every other weekend. Mine last approx. 4-5 hours. I used to pre-treat, but don't anymore. I really don't have any terrible side-effects..always some swelling..slight itchiness across the area where the needles go in..but not bad. Typically within 24-48 hours after the infusion...I really start to drag. The infusions have kept me from getting respiratory infections every 4-6 weeks. I am glad that I decided to go this course of treatment. Typically for CVID the IVIG dosage is much less than if someone is being treated with IVIG for neuropathy.

Best of luck.
SjoDry

[Nomad]

Thank you everyone.

Keelton, there is an illness called CVID that for some reason, relatively often appears with Sjogrens and ITP (low platelets) too.

Anyway, do you get a lot of sinus infection and colds?

If you do, you might want to see an immunologist and discuss the possibility of having CVID (immune deficiency).

There is testing for it.

If you have CVID, I think the only treatment is IVIG.

To the best of my knowledge, generally speaking, this treatment does not help with the dryness etc. associated with Sjogrens Syndrome. It does help a lot with getting sinus infections etc. from CVID and in my case often helps increase platelets.

[irish]

The thing with the IVIG treatments is that there is a board that oversees the use of the product. There is a list of approved illnesses that the IVIG is used for without question. This list has been set up after intense education about various illnesses and the outcome from the IVIG when used for treatment.

The Sjogrens is not covered and I can see why as I have been on IVIG for 10 years and it has not helped the dryness at all and I still have many of the ailments that go along with it.. It takes 2000 to 10,000 donors for essentially each one dose of IVIG and this takes much processing and testing to get it down to a usable product. It is Very labor intensive done under strict sterile conditions in facilities that are practically all stainless steel. Triple locked chambers with special air cleansing abilities. Very high tech and very expensive. My IVIG is about 6,000$ each month and thankfully I have insurance that will pick up much of the cost. I happened to have lucked out when it came to the right insurance.

There are many other oral medications plus some IV meds that are used to treat most of the autoimmune diseases and they do help many people. You can do a lot of research about IVIG and the treatment of various diseases. Good luck. iRISH

I tried to add something and I lost a few things in the process. Hope I got enough of it back. Also, I think the immune deficiency site is primaryimmune.org. nI am going to quit before I lose this whole thing.

[Jasper]

While IVIG treatmernts are not used for a general Sjogren's diagnosis, per se, IVIG is sometimes used for neuropathy caused by Sjogren's Disease.

Keelton, you need to get a diagnosis.

Without a diagnosis, you CAN get Evoxac, Salagen, Restais to treat symptoms.

However, without a diagnosis, no one will put you on any drugs specific for Autoimmune Disease (Plaquenil, DMARDs, Methotrexate, Cellcept, Imuran, Rituximab, etc.).

[warmwaters]

I had IVIG, and had a reaction on the second infusion. Went light headed, blood sugar dropped, ended up stopping the treatment and giving me some fluid IVs to get me back in the game.  A little scary, but ultimately not dangerous.

I had taken antihistamines and some cortisone before the infusion. Was having the infusion at a slow rate.

Not telling you to scare you, just one example of a reaction.

[irish]

Just to let you know that things do happen. I have been on 4 different products. The first product I was on for a couple of years and one day after a couple of hours of infusion I started getting hives. I had them over a lot of my body but I was in a good place and was given appropriate treatment. They watched me really good and I went home and came back on one month and was started on a different product. They did increase the IV hydrocortisone that I get with each infusion. Everyone pretty much gets the hydrocortisone prior to infusion.

I did some research on IVIG and they have been doing this over 20 years and the standard protocol pretty much includes the hydrocortisone and benedryl to because they have learned it help waylay any reactions. Irish

[deniselb]

The neurologist I saw recently briefly mentioned IVIG as something he might be recommending for my peripheral neuropathy and orthostasis. I have an appointment in three weeks.

Meanwhile, I started looking to see if is something that Medicare would cover, and I couldn't tell. I see that it's considered experimental for Sjogren's but does that include when you have neurological problems? Clearly I could not afford to pay for it out of pocket.

Is anyone getting IVIG covered by straight Medicare? For what diagnosis?

[irish]

Medicare pays some of my IVIG and the rest is picked up by my BCBS supplement. If I had been diagnosed prior to being deemed disabled and then put on Medicare, it seems like I would not have qualified for Medicare picking up some of it.

I was deemed disabled back in 2004 and did not get a diagnosis of myasthenia gravis until 2006 and then was put on the IVIG for the Myasthenia gravis. The neurological issues are a different story and the neurologist needs to be talked with along with his office to see what the ins and outs of this whole thing is. Many neuropathies become eligible for the IVIG but it has to do with the neurologists ability to write up things that the Medicare will understand and agree. Talk with the insurance people at the doctors office before talking with the Medicare people. Need to know both sides but start with docs side first. They deal with Medicare and insurance companies all the time. Good luck. irish 

[anita]

Irish is right about Medicare NOT covering IVIG just for Sjogren's.  But if the patient has neuropathy from the Sjogren's (or any other autoimmune disease process), then Medicare will pay for it.   I have both CVID primary immune deficiency and both peripheral/SFN and autonomic neuropathy from Sjogren's.  So I get a large dose of IVIG (much more then just for immune def), and my straight Medicare covers it.

It doesn't make a difference whether you have the Dx before or after being deemed disable and receiving Medicare.  I started receiving IVIG in 1997 yet my Medicare didn't start until 1998.  When it started, I received the same coverage as if I was on Medicare from the start of my Dx.  Medicare pays their portion (80%) and my Tricare for Life (Military retirement insurance from my husband) picks up 100% of the balance.

It is much easier to get IVIG for neuropathy now...especially if you have an immune based neuropathy (which I believe is FDA approved for IVIG now).  CIPD is also approved for IVIG, as is GBS (Guillain-Barre Syndrome)...both inflammatory peripheral neuropathies. 

As Irish said, your doctor is the best place to start...they know how to code the Dx to get things approved.

[Nomad]

I wont be able to have prednisone/cortisone.
At best,  I will only be able to have a small amount.
This is because prednisone hurt  my retina.
I am frightened.

[irish]

Can you have some of the other stronger oral drugs such as Cellcept, Methotrexate, etc. Talk with your doctors about this. Irish