Having my first IVIg treatment and I have questions...

[keely36]

I am in a terrible flare up and because I have terrible reactions to steroids they are treating me with an IVIg Infusion for 3 days.  I was diagnosed in December with RRMS and on the steriods felt like I came out of my flare up for barely 2 full weeks.  This flare up has lasted a solid month and is getting worse every day.  My questions are: 1.  Has anyone had the IVIg infusion and had any adverse reactions that i should look out for?  2.  How long did it take you before you started to come out of your flare up?  (I have read 3-4 day or 3-4 weeks)  I am supposed to be returning to work of Feb. 22 and I complete the treatments on Fed. 19.  If I am still going to feel this bad there is no way I can return to work and function in my high stress job.  Any advise or help is greatly appreciated!!!

[Khiba]

My Neuro just figured that an immunosuppressant drug was not the best thing for me. I know all Neuros don't think alike so in your case Avonex probably is a fine choice, especially since you have been on it for a long time.

I was diagnosed with MS shortly after I had a double mastectomy so anything to keep my immune system modulated was better than suppressed. After failing with Copaxone, she picked the IViG and its not bad. Better to have infusions than a daily shot, in my opinion. LOL Plus I am very thin and don't have any fat to inject into.

Stay well,
Jessica

[truelove47]

I was wondering  if you know why the neuro nixed avonex.

I also had breast cancer and nothing was said about taking avonex.  I have been on avonex for a long time.  Thanks in advance

be well, Linda

[Khiba]

I totally understand about the stress factor!

I don't work full time anymore. Luckily I have been self employed for many years so it was rather easy to scale back my work to fit my condition. I did/do photography and can no longer carry the heavy cameras around outside to do sports. I still do a bit of portrait stuff by since my hands are numb and I am half brain dead thanks to the MS, I don't do too much. I sure hate this disease.

All I do for the MS is the IViG, take about 5 mg valium a day for spasticity, Low dose naltrexone for the whatever factor and Elavil in a low dose at night so I can sleep without pain.

I started out on Copaxone but got horrible flu like symptoms with it and went off. Since I have had breast cancer, my neuro nixed the immunosupressant drugs like Avonex, Rebif and Betaserone and went with the IViG. My Neuro says I am RRMS although I think since I don't have much improvement that I might have transitioned to Secondary. I hope not.

[keely36]

Thank you for your response. May I ask what type of other medication you are using to control your MS?  Are you in RRMS stage or further along?  Lastly, do you work a full time job?  Sorry for all the questions...I am just really freaked out about going back to work. It feels like I have been in a constant flareup since early Oct. I just need a break from the pain and fatigue longer than 3 wks to manage my job. As I said it is very stressful.

[Khiba]

Hi Keely,
I am on IViG for my MS. Steroids never helped me at all in a flare. The IVIg is a pretty good treatment. It does have a few minor side effects that I have noticed and that others have experienced after discussing it in the infusion room where I go for treatment.

Side Effects include: Headache, often severe. Fatigue for a few days, sometimes upset stomach. It makes me stiffer and sorer for about 3 days after then I perk up, get energy and my symptoms lessens for about 3 weeks then I run down like the energizer bunny with bad batteries. LOL

When I get my infusions, I get Zofran for nausea, Toredol for headache, and Ativan for anxiety in my iv line before they start the IViG. That combo keeps me comfortable and side effect free during the infusion.

If you get to feeling bad while they infuse it, ask them to make it go slower. That helps too.

Overall, I find IViG to be really tolerable. I make sure I take at least 3 days after the treatment to recover. I sleep, drink lots of fluids and take it easy.

I hope this helps some.

Jessica