IVIG SIDE EFFECTS

[cinde]

Hi, I'm new to this site and was just diagnosed with CVID, along a few autoimmune disorders, about 5 months ago.  I've been on Gammaguard for the last 4 months and my legs ache all the time.  My rheumy said I needed to work out, and that the IVIG was not the cause.  The pain started just after my first treatment in June.  I spoke to my immunologist and he said the same "Not related to the IVIG".   Basically, I have be leg muscle pain.  It's really bad when I have to walk up a flight of stairs or a small incline. My legs feel as though they have ran a marathon and I'm at the end of it.   I was wondering if anyone else experienced this type of muscle pain?

[floopyjim]

Hi Cinde,

While I don't do IVIG - I do SCIG at home, my immunology nurse did mention muscle pain as one of the possible side effects, along with cramp, headaches and fatigue (all of which I do get). After a bit of a search, I get the feeling that muscle pain could be mild cramps? if so, you could try a glass of tonic water each day - the quinine in it can help.

Maybe you need to suggest a change of product with your Immunologist?

Cheers,

James.

[s162216]

Hi cinde and welcome to the forum,

Whilst some people do experience muscle aches shortly after having the IVIG, they don't normally last beyond a couple of days after the infusion. As Jim suggests, try discussing this with your immunologist as it could be an indicator that you might be better on a different product.

You say that you've got other autoimmune issues though? I'd say it's probably more likely that the aches are related to one of your other conditions, as it's quite a common symptom so you might want to get everything else checked out as well.

Your rheumatologist is probably right though, perversely physical exercise usually helps when I get muscle aches so I tend to go swimming when I get them.

Hope that things improve,

Sam.

[emma1308]

My husband receives his treatment via SCIG and has the fatigue, joint pain etc but it lasts a few days only. A chat with your Immunologist would be the best thing.

[mothergoose]

I started getting cramps at night only as soon as I started IVIG after 4 months I changed to SCIG Hizentre brand. All the side effect were gone after change exect tiredness and leg cramps muscle.pain. I only get this leg pain at night, my legs are just fine during the day. The pain is from hips down to toes and keeps me awake.
I was tested for rumimy markers and potassium levels both were normal.

[john]

Hi, I had night-time leg cramps for ages until I mentioned it to my immo, and he prescribed me Quinine Sulphate pills to be taken before bed. The cramping problem has now gone away, although I still take the quinine as a prophylactic. Drinking tonic water has a similarly good effect although the pills are far more convenient.
Aching bones and fatigue seem to go along with the immunodeficiency and just about every CVID patient I speak to has the same story on that!!!
John

[mothergoose]

Thanks John for that info, when I mention my legs hurt my Dr. went right to RA which I was quite sure I didn't have. In hind sight my leg cramps and pain started about the same time I was put on IGg.
I see my Dr this week and will ask about Quinine Sulphate, in the mean time I will drink some tonic water.
This really effects how much sleep I get, and if I don't sleep well my health rolls down hill from there.

[cinde]

Thank you all for your replies. I'm working with my doctors to determine the cause of the muscle pain. I had a ultrasound done on the vascular system in my legs, and that out came clear. Now they are checking my back, as I also have ankylosing spondylitis of the lumbar section. This might me the case. I am unable to have MRI's due to an implant, but I will be having a CT scan and nerve study done next week. Hopefully, between this series of test with my back doctor and my neurologist, they can determine what the issue is. I do have to be careful of the other medicines I do take, as I also have autoimmune hepatitis and autimmune pancreatitis. These both limit what I can take on a regular basis.

Thank again so much and I'll keep you posted.

Cinde

[mothergoose]

John is Quinine the same medication they use to prevent and treat Malaria, if so I can't keep this down, from previous expirence.
I bought tonic water which I quite like, but my Dr said it has too much sugar for me to drink. I am very Hypoglycemic, so I avoid simple carbs and sugar.
If you don't eat them then then your pancreas is not signalled to make insulin, when mine makes insulin I make too much, so my sugar level drops too low.
So I eat a moderate protein high fat diet, it keeps my sugar levels stable.

Lately I have not been getting the leg cramps too often so I will keep my fingers crossed that they stay away.

Thanks for the response.

[mothergoose]

Cinde

I am sooty to hear you are having such a hard time finding out the cause of your leg pain,
Keep us posted on what you find out.
I hope things improve for you.

Mothergoose

[mothergoose]

Update- I have been taking potassium and magnesium since I posted this and also trying to get in a walk each day.

I am not sure if this helped or just being on SQIG longer. Now instead of every night I only have leg pain about one night a week. Any night not the night of treatment.

I would say the potassium and magnesium are helping because I recently tried stopping it for a couple of days and the leg pains came back right away at night.

FYI I had my potassium level tested right before I started taking a supplement and it was right in the middle of normal levels, I only take a small dose mid day, but I am not going to knock what seems to be working.

[charley]

Hi there, I get quite severe leg ache/pains and can also be in arms also. These generally come on the day after of a few days after IV and last for 2.5 weeks running up the next dose at 3 weeks. THey have got worse in terms of how long they last the more I have had the IV. Consultant said not Iv related but I disagree. He said likely chronic fatigue, but funny how starts when you start on IV isn't it?? He's trailing me on a small dose of steroids for 2 days after IV to see if helps, and it did seem to for a week but came back after that. I also take a lot of protein and mitochondrial and adrenal support supliments to aid them. And this seems to help a lot, I don't think consultants truly understand what happens in the bod Post IV, they are still trying to understand, but I would prefer if they said, were not sure, not, it's just CVID or its nothing to do with it, even tho, we were fine b4 starting IV!!

[veronica]

Sept 14, 2015 9:08:32 GMT cinde said:

Hi, I'm new to this site and was just diagnosed with CVID, along a few autoimmune disorders, about 5 months ago.  I've been on Gammaguard for the last 4 months and my legs ache all the time.  My rheumy said I needed to work out, and that the IVIG was not the cause.  The pain started just after my first treatment in June.  I spoke to my immunologist and he said the same "Not related to the IVIG".   Basically, I have be leg muscle pain.  It's really bad when I have to walk up a flight of stairs or a small incline. My legs feel as though they have ran a marathon and I'm at the end of it.   I was wondering if anyone else experienced this type of muscle pain?

When I was on Gammaguard I had the same issue...but in the long run I believe it had to do with the side affects of treatment with a bag of fluids that caused my kidneys to start shutting down. I now have stage 2 kidney disease as well. I took a couple month break before I was not able to fight another affect. Now I am using Privigen with only a tube or 2 fluids.