I'm wondering about the side effects of Actemra in this group

Thanks Susan and Eileen,

Susan,   

   When you say "I do cheat and take Vit. C when I think I've been exposed", do you mean exposed to viruses or infections?    I wouldn't think taking Vit. C would be counterproductive to taking Actemra.  Vitamin C has only been helpful to me.  

   Also, I notice you do the infusion, but my rheumy said I need to do the self-injections at home.   I am 66 and don't know if the difference is because of my age.   

 

thanks,

Pam

Apparently some insurances will only reimburse the infusions done in a hospital. For GCA the recommendation is for the self-administered weekly injections.

Yes, when I feel vulnerable to contagious diseases. My rheumatologist says we're trying to tear down my immune system, not support it, so taking C is counter-productive. To me, that's counter-intuitive, and I notice my primary md seemed puzzled when I mentioned it. I live in the U.S., and we're having a major flu epidemic, and I don't want to get that (also don't want the flu shot).

I do infusions, probably because my insurance covers them. I notice Medicare gets billed about $5k a month plus another $700 or so for inserting the needle.Don't know what they actually pay out. Shameful. I don't think it's an age thing - I'm 71.

I feel the expression "to tear down the immune system" is very misleading and has all sorts of unfortunate connotations.  What we are trying to do is control our immune system so it doesn't attack our own tissues, not disable it altogether.  Whether Vitamin C is going to help or not is another question but I can't imagine it can harm you.

Vit C can have negative effects on cancer patients.  My late husband was instructed not to take C during chemo/radiation.

Fair enough, but I was talking about autoimmune disease, not cancer.  

Sorry, I cannot remember the reason, but it could also apply to autoimmune diseases.

Well, the articles which seem to indicate that Vitamin C is actually helpful for autoimmune disease are only available as abstracts and I don't understand the medical language.  But I didn't find anything (admittedly not a very intensive search) which indicated that Vitamin C was harmful.  

Supplemental Vitamin C during chemotherapy is not recommended because it blunts the effect of the chemo by mopping up the free radicals which are supposed to be targeting cancer cells.  According to article in WebMD.

Thanks Anhaga.  I too looked it up.  I just wanted to make sure that C was ok.

There is a considerable amount of work that suggests that too much of any of the substances that have been said to reduce oxidative stress - vit C and vit E amongst them - can be harmful. The body NEEDS some oxidative stress as a protective measure so that cell breakdown still exists where required. However, studies have shown that very high doses do potentially have beneficial effects in vascular disorders. BUT, this is from a report about work done in Cardiff:

"There's a catch, of course. If you're thinking of dosing up on vitamin C in a bid to protect your arteries, you should be aware that large clinical trials have found vitamin C supplements to be completely ineffective at preventing cardiovascular disease.

"Taking vitamin C orally probably can't achieve the high blood concentrations necessary to have these beneficial effects on arteries because it quickly gets filtered out by the kidneys," Prof Griffith said."

Vit C is water-soluble - when you take large doses orally, you pee it straight out down the loo.