cidp and periods

I didn’t have any changes but everyone is so different….

Nope, still got mine…as irregular as it ever is

Dear Dawn,

Sorry it has taken me so long to get back to you, you are more then welcome to call me any time. Friday morning I am leaving for Texas for the weekend, but you can try to reach me on my cell phone, I will leave my # on your answering machine.

To get back to your post, I just turned 24 and I quit having my periods shortly after I was dx. I always figured it was the medication I am on that was keeping me from having them. In the last 3 years I have had a total of 5 of them.

Emily

I haven’t had one since Oct and skipped a few before that. This doesn’t make me sad! 😉

I have a almost 11 year old daughter with CIDP, dx at 3 1/2 years old. What meds. are you on that have affected your period. I have never heard or thought that would be affected. I always thought that when she started puberty it would put a stress on her immune system and the CIDP would flair up.
Thanks,
Cindy

I was assuming that it was steroids,but I don’t know that as a fact.

Even tho I have GBS, I contracted a totally rare lung disease (more rare than GBS!) and had to be treated with massive doses of steroids among other things just to stay alive. It took 7 1/2 yrs. to get fully weaned from steroids but hey the periods went away 😀 Steroids do have some nasty side effects ~ especially with large doses.

During the 21 months that I was on 1,000 mg of weekly & sometimes biweekly steroid infusions, I still had periods. It wasn’t until I was put on heavy doses of cytoxan for 9 months that I went into menopause. But I was warned this would be a side effect of the drug. But at age 49 & virtually no use of my hands, this was a rather pleasant side effect for me. I suspect that this is also the drug that probably stopped them for Emily as well.

I think the Cytoxan is what originally stopped my periods, but I think the Cyclosporine kept them away. I am not positive if this is why I am not having priods any longer or not.

Emily

I always had irregular periods until I was diagnosed with CIDP. Everytime I had one, I would have a severe relapse of CIDP. I tried for two years to get a hysterectomy, but the the doctors were to scared what the outcome might be with the CIDP. However, I finally found Dr. Kucera at Providence Hospital in Portland and he was willing to do the surgery. I had the hysterectomy several months ago. Initially I had an exacerbation, but since that time I have done better than I had in the past two years.

My neurologist was pretty sure that in my case, there was a hormonal interaction with the CIDP despite the fact that there isn’t medical data out there that shows there is any kind of connection.

For anybody that has problems with the CIDP around their period, I wouldn’t hesistate to recommend a hysterectomy.