Ivig Day 5 Completed.

[kim5204]

Just finished day 5 ivig treatment feeling good, but not sure if its the extra fluids they are giving me daily or the ivig thats helping. Will no in the next few weeks if its helpful.

My florinef stopped working and started licorice root extract and it also seems helpful keeping my blood pressure around 110/70.

Also my hesrt rate is not going up anymore when I stand but blood pressure stays the same but still get symptoms weird??? going from really high heart rates to normal still have symptoms weird??

The neurologist was hoping the ivig help low blood pressure.

Hoping this helps but also am aware if may not too, still on j tube hoping to be able to reduce the amount of time I am on it.

Also ordered in nunn tablets to try too.

[LMG]

Good luck with your new treatment! I take licorice root also and think it helps bp more than the florinef. What brand and how much do you take? I take a kind of gooey form by allergy research but can't take as much as suggested, or I can't sleep.

[kim5204]

I use naturally organics nova scotia licorice. I am from canada and thats the only one my store carried.

I started taking it and have slept like a baby funny how people are so different. lol

[Guest Alex]

That's good news Kim.

I'm happy to hear that you are already seeing some benefits of the IVIG treatment and that the licorice.

What kind of symptoms are you still experiencing if you don't mind sharing?

Also, I see you're taking melatonin, have you ever noticed your BP being lower because of it? I started a thread about my experience and some research findings on melatonin and I'd be curious to hear about your experience.

I hope you continue to improve with this new treatment.

Alex

[kim5204]

I dont take melatonin all the time but maybe 2, 3 times a week but will look to see if I notice any blood pressure changes next time.

I only go for Ivig treatments once a month now, they just did a loading dose of 5 days straight havent had any side effects except little head pressure, but they also ran 500ml saline fast through iv first so haven't figured out if that was helping or the ivig will no few days if it was the extea fluid.

The symptoms I still have dizziness nausea worse when standing still feel short of breath but can stand longer on the licorice root.

[Guest Alex]

I guess your dr opted for 0.4 g/kg/day for the IVIG, thus the 5 day induction treatment. My initial infusion was done in 2 days at 1 g/kg/day. So I received a similar amount but in a shorter time. Also, in my case I wasn't given any saline prior to the IG, but I got (the first time around) a significant amount of fluid as I was given IV solumedrol as a pre med. I know that the extra fluid didn't help me at all, in fact one of my 2 neurologists suggested that my post infusion headache might have been caused by the fluid overload.

The dizziness might have to do with cerebral hypoperfusion - your BP might be OK, but the blood flow to the brain may still be inadequate - there have been some posts about having OK BP, yet feeling dizzy or lightheaded - you can look for them if you're interested.

I assume you had the nausea before starting this treatment, otherwise it could be a side effect - in my case it was short lived.

Also, I don't want to scare you, but I got a fever combined with a headache 10 days after my first infusion, hopefully you won't really have to deal with anything like that.

No worries about the melatonin. It's just me being curious

[kim5204]

Have the Ivig treatments helped you?

[RichGotsPots]

Hi Kim, that sounds great! Hope it helps, I think it will! Usually after 3-4 weeks you will feel it wearing off and then that will tell you it's working. I strongly feel that it will help regrow your nerves because it will slow the autoimmune attack, but at some point another autoimmune med will be need to help maintain the remission. Mayo found this to be true in case studies as well.

What kind of breathing troubles did you have before? Dd you have amy during the transfusions? Thats the only thing I worry about when I finally get it (been trying for over a year now already, hopefully soon).

The good thing about licorice is it is a strong antiviral med too which I think helps with autoimmune as well. Plaquenil is also anyviral and they use it for autoimmune. In china licorice is used for TB.

[kim5204]

The breathing problems were there before heaviness laboured breathing. I had no problems with the infusion but was givin fluids before the infusion.

Thanks

[looneymom]

Hi Kim

I was wondering how you were feeling and did the IVIG treatment help with your low blood pressures? At my son's last cardiologist visit, he mentioned to us that he might be willing to try this with my son sometime next year. However, our cardiologist suspects that my son may have PANDAS. So we are trying to make sure this is not the underlying problems causing the POTS. My son has had some immune testing that indicates his T- cells just don't want to function very well when white blood cells are up. My son is still on his midodrine but his blood pressures are low most days. I'm really curious to know if the IVIG has helped with your low blood pressures. Hope you are feeling better and have found your road to recovery.

Rachel

[kim5204]

The blood pressure hasnt gone up and I wad due for my Ivig treatment today, but due to some kind of infection I am currently in the hospital and they will hopefully start ivig treatment next week again.

The infection is not helping my blood pressure ut was 73/43 when I came in the hospital.

Hhopefully will see some improvements in the next few weeks.

Although the week after my week long ivig infusion I felt great.

[looneymom]

Sorry to hear that you are in the hospital. Infections are no fun. My son has had a double ear infection and his blood pressures have been much lower also. Hope next week is better and that you are able to have the IVIG. Hang in there and keep us posted.

Rachel

[krystal]

How is this IVIG supposed to help with the low blood pressure? I googled IVIG and wikipedia says it's some sort of blood transfusion used for

• Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
• Autoimmune diseases, e.g. immune thrombocytopenia, and inflammatory diseases, e.g. Kawasaki disease.
• Acute infections.

IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases such as dermatomyositis. Currently, IVIg is being increasingly used off-label in a number of pathological conditions; the increasing world-wide usage of IVIg may lead to shortages of this beneficial drug.

IVIG is useful in some acute infection cases such as pediatric HIV infection as well as autoimmune, such as Guillain–Barré syndrome.^[1]

I didn't read anything about it for pots :/

Sorry this is way over my head.

[kim5204]

I am not sure how it increase blood pressure but my fever went down today and they did the ivig treatment and when there dojng it my blood pressure goes up. But went back down after the infusion.

My neurologist said it should help the blood pressure I didnt question him how it was suppose to help, I was desperate for anything to help the florineff salt stopped working blood pressure was really low.

They just did privigen(ivig) today and will be doing it for 5 more months than reasses.

I am from canada so its easy for them to order ivig treatments willkng to try anything that could possibly help.

[looneymom]

Hi Kim,

Hope you are feeling better. My son is off the florinif also. He only takes the midodrine at this time. However, our cardiologist did a 4 week trial of dessmopresin to see if it would keep his pressures up. It didn't help instead it raised up his heart rate. So my son is back on the midodrine 3 times a day. However, what I have noticed is the midodrine is working better for him now. I'm wondering if giving his body a break away from the midodrine helped. Has your doctor tried anything different to help with low blood pressure?

With IVIG treatment, I understand that sometimes you don't see too much improvement until a week after. Tyler's cardiologist is thinking his POTS may be immune related and he is thinking about trying the IVIG treatment to see if it would help his other symptoms and low blood pressure. I was hoping that you might be seeing an improvement with your blood pressure after the treatment. How many treatments have you had so far? Praying and hoping that this treatment is helping with some of your symptoms. Keep us posted and take care of yourself.

Rachel

[kim5204]

Yesterday I had a headache but do feel better today. I find I am hungry the next week after my infusion which never happens so I will take that as positive. I see my neurologist dec and if my blood pressure is still low he will add midodrine.

I have issue with keeping blood volume up everything goes right through me.

[looneymom]

Good to hear that you feel better and have an appetite. Take care and get some rest.

Rachel

[kim5204]

Thanks.

[looneymom]

Hi Kim

I was wondering how you were doing. I went back to look at old post on IVIG treatments because my son is getting ready to go through his first treatment this weekend. Did thtreatments help or did you have to switch to something else?

[kim5204]

I find they do help for about 10days afterward i actually had one today and doing ok was able to take my kids shopping i do get a headache 2 days afterwards though.

I hope he finds help with the ivig treatment and please let me know how he does.

I actually am trying a différent treatmet friday called rife freequencys for some chronic bacterial infections i have and i am hoping it will help too with other symptoms i have. I have a friend whos husband does this treatment every week and it put his multiple sclerosis in remission.

good luck

Kim

[looneymom]

Glad it's helping Kim. I hope IVIG will give my son some much needed relief.