Ivig how do I tell it's working?

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WendyWooG

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Hi
I was initially diagnosed with mnd but as I was presenting with purely lower motor neurone symptoms my neuro felt there was a possibility of MMN.

I have had a partial initial treatment of Ivig, they only got 3 of the 5 doses into to me as I had an allergic reaction and felt quite ill even though they loaded me with antihistamines and steroids. They are going to try again with a different brand in 6 weeks.

At the moment I just feel exhausted, I tire so much more easily than before, I have constant headaches and the muscle jumping and cramping has got worse. Treatment was two weeks ago and the symptoms are easing a bit but I don't feel any stronger, how do I tell is it an obvious improvement or a slow one?

Thank you

Wendy X
 

pittsburghgal

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Hi Wendy.

My husband had the IVIG initially when his neurologist thought it was possible that he had MMN. He felt that he was responding positively, mostly with improved level of energy. Honestly, I could not see any noticeable improvement. We went to the Mayo Clinic in Rochester, Minnesota for a second opinion and the neurologist there said if there is a positive response to IVIG, it is a very noticeable objective response like a person who can't raise his hand before the therapy can do so after the infusion. We then realized that my husband really had no noticeable improvement with the IVIG. He was diagnosed with ALS during this evaluation at the Mayo Clinic.

I am sorry that you are having such a hard time with the IVIG. My husband had no problems with it so i"m afraid I can't offer any helpful advice with that.

Sharon
 

Vincent

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I got all 5 treatments down no problem, no noticeable improvement. However, 2 weeks after i wound up in the hospital with blood clots which led to a pulmonary embolism. Not all fun and games. Be careful with IVIG. A very rare side effect. Guess I'm just lucky that way.
Vincent
 

LifeEnthusiast

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Because of a too-fast infusion rate, I developed aseptic meningitis from IVIG. Your headaches are likely coming from a too-fast infusion rate and your allergic reaction. I'd ask for the rate of infusion to be slowed down when you switch to a new brand. Likewise to what Sharon said, I thought I had a tad more energy after IVIG, although it was short-lived. It was merely a result of me laying in a hospital bed for two days, knocked out by large doses of Benadryl.

There was no improvement in muscle strength and I had been told that such improvements would be noticeable within days. Despite that, my neuro decided to continue the treatments for six months to be sure. To me, his decision indicated that perhaps some don't see results immediately. Luckily enough my private insurance was agreed to pay.

And like you are experiencing, I found the treatments left me feeling ill. I'm guessing everyone is different. Even my current neuro finds my progression puzzling. Because of the slow rate, I wonder if the diagnosis is correct. But we have nothing else left to test and no other explanation.

So for now, I just thank my lucky stars I'm slow. I may not be good, but I'm slow. I do hope this next round with another drug proves successful. I'm sorry I can't give you a definitive response. Wishing you all the best.
 

WendyWooG

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Hi All
Thank you for your answers, I guess it's just a wait and see then.
I was on the slowest rate of infusion the whole time because of the reaction it took 10 hours. Not looking forward to the next lot but really want to give it a try. I have such mixed feelings over this.....
 

LifeEnthusiast

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I had to do the slowest infusion rate too. It also took about 10 hours. Fortunately for me, the slow rate reduced my reactions. Sorry to hear you are having such a tough time with it. Fingers crossed the different brand helps. They switched my brand once due to a short supply of another. I was surprised how many more side effects I had while receiving the different brand. I'd stay stick with it. I get the mixed feelings. It's not an easy treatment but at least, you'll know for sure whether it or not it works. When do you have the infusions again?
 

WendyWooG

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Hi thanks,
I went in to see the specialist today and they felt it was worth continuing so are booking me in mid April for the next lot. I was on a brand called Privigen? Before but as this caused problems they are going to try Gamunex which has a better tolerance level apparently. So am crossing fingers for then and hopefully it will all go better.
Wendy x
 

laurel

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Hi Wendy,
My husband has been on IVIG 120 Grams every 3 weeks since 2007. He was a diagnostic conundrum and they suspected ALS, but with his positive response to IVIG back in 2007 they wound up diagnosing him with a motor variant of CIDP. My husband uses Privigen due to side effects to other IVIG including Gamunex. We have learned that the key to avoiding the terrible headaches and nausea etc. is to drink lots of water for several days pre IVIG, during IVIG and post IVIG. IVIG is very thick and you really need to be WELL hydrated prior, during and after. His positive response was basically increased function in his right hand which has significant atrophy (he has no thenar muscle at all and little muscle in his forearm). He could not turn a car key prior to treatment. He also has a drop foot that slaps when walking, but improves somewhat with IVIG. Many in the day care at the hospital where he receives his IVIG have taken several courses of IVIG to see any positive response. Also in the beginning when hubby was receiving IVIG, he pre-medicated with Naprosyn 2 tabs. and frequently had to take another one when he got home to ward off the headaches. Good luck.
 

WendyWooG

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Thank laurel,
I was warned about dehydration so was drinking lots before and during the treatment, on top of the headaches I got severe itching dizziness my blood pressure got very high and then my throat started to swell up and I got very shivery, it was all a bit scary.
Thanks for the info that you know people that needed several courses before seeing a result. It encourages me to hang in there with it.
Wendy x
 

Grace89

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Wendy,
I am on my 8th week of IVIG. I haven't noticed any improvement but I haven't progressed any. I do have some side effects from the IVIG: headaches for days afterwards, itching 1-2 days after treatment and extremely dry skin(my hands are peeling and cracking). I take treatment once a week.

I'm sorry you had problems with yours. Hopefully the Gamunex will be better.
 

WendyWooG

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Thanks Grace, I had not heard of weekly treatments mine seems to be set up as five days of 10 hour infusions once every six weeks. I wonder what the reasoning is behind different timetables. Glad to hear you have no further progression.
Wendy x
 

WendyWooG

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Well second round in, the Gamunex was better no severe allergic reactions, but I still had nasty side effects migraines itching and horrendous joint pain. No signs of improvement still but I am hoping.

When I had clinical exams this time though there were some changes that concerned me, my doctor noticed subtle upper motor neurone signs, slightly increased tone and mildly brisk inverted reflexes in my left arm. Up until now the reflexes on my affected limbs have been absent.

My current diagnosis is probable mnd/ possible MMN??? And yes the doctor did put that many question marks on! I am a little concerned as both the NCS and DNA tests came back negative. I had to really push to get the doctors to tell me.

Does anyone else with MMN have inverted reflexes or any kind of upper motor neurone sign? Hoping for some reassurance that this is normal.

Thanks Wendy
 

timag49

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Hi
I was initially diagnosed with mnd but as I was presenting with purely lower motor neurone symptoms my neuro felt there was a possibility of MMN.

I have had a partial initial treatment of Ivig, they only got 3 of the 5 doses into to me as I had an allergic reaction and felt quite ill even though they loaded me with antihistamines and steroids. They are going to try again with a different brand in 6 weeks.

At the moment I just feel exhausted, I tire so much more easily than before, I have constant headaches and the muscle jumping and cramping has got worse. Treatment was two weeks ago and the symptoms are easing a bit but I don't feel any stronger, how do I tell is it an obvious improvement or a slow one?

Thank you

Wendy X
Hi. I've had almost 8 months of experience now with the IVig. When I was on Gamunex I had terrible hives and itching and last month we changed me to Privigen. I also get a steroid shot prior to the infusion and I've now gone almost 45 days without the hives and itching. I also show only lower motor neuron symptoms and have had these for 4+ years now. So I have the ALS/MMN? Diagnosis as well. My understanding is that the damage that has been done may not be repaired by the infusions but it can certainly halt the progression of the disease. Eight months into this is my belief that I have the same functionality that I had last October so I am very encouraged by that after having experienced 3 1/2 years of decline. I'm fortunate that I have good strength in my legs but both arms are completely paralyzed and I've lost some strength in my neck. Again, it is my belief that the infusions are working and having a positive effect on my life. It is also very clear and reading all of these posts that we all react differently to the different manufactures products. So I do think our doctors have to try different manufactures sometimes and that has worked for me. I do hope you have fewer side effects and see improvement/stabilization.
 

WendyWooG

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Hi timag
So glad it's working for you, that's encouraging thank you. I have been a bit fed up with it as I have continued to progress/ lose function very slowly as well as having the side effects. Hopefully it will be third time lucky for me and I will get some good results or at least a halt in progress.
Wendy X
 
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