hello, I'm new here

bearlover · 10-08-2007, 09:28 PM

Hi Everyone,

I stumbled onto this site while researching hormone therapy that my gyn wants to try me on (again).

I am 45 years old, first dx'd with PCOS when I was 21. My battle with this disorder has been further complicated after being dx'd with an inflammatory arthritic condition last year called Ankylosing Spondylitis. This diagnosis took 16 years, as my joint symptoms started when I was 28, and when I was 26 I developed Optic Neuritis (which nearly blinded me), which is related to this arthritic condition, but no one acknowledged that then. I was told I developed the Optic Neuritis because I was overweight.

ALL of my medical problems have always been blamed on my weight. Then about 3 years ago after becoming very unwell from the systemic arthritis, I lost 167 lbs. very rapidly. That was a wake-up call for my doctors, as all of my medical problems did not disappear with the weight. Which ultimately led to me finally getting a diagnosis. My treatment for the arthritis consists of medications linked to weight gain (Prednisone on & off since I was a teenager, and most recently Enbrel injections. Which have made a tremendous amount of difference, but has also led to regaining 50 lbs.

I know PCOS is a more recognized disorder these days, but years ago, most of the doctors I saw were rather indifferent to the whole thing. Most of them just told me if I lost weight, my periods would normalize, the hair growth would stop, etc. etc.

Now as I am approaching the "menopause years", I am experiencing a reactivation of some of the problems associated with PCOS. And I'm wondering if anyone can tell me what to expect with this disorder in the next few years?

What has anyone used that actually controls hirsutism? Nothing they've tried for me has been particularly effective. For me it's always been the one aspect of this disorder that has bothered me the most. Even beyond the fertility issue.

Any fellow sufferers of PCOS along with an autoimmune disease, such as Lupus, RA, etc?

So as I struggle to lose at least 25 of the 50 lbs. I've regained & deal with the resurgence of PCOS & its affect on my arthritis, I'm glad I found this board where I'm sure I will find alot of useful information.

I look forward to getting to know all of you a little bit better.

Janet

Navi · 10-08-2007, 10:28 PM

Welcome to SC!

Hirsutism; have you ever tried Spironolactone/Aldactone? They both function somewhat as anti-androgens, and are usually prescribed to PCOS ladies to control the hair growth/loss. There are also a lot of non-traditional options (such as spearmint tea) and you can find information on those on the hair and alternative treatments forums.

Also, what kind of tests did you have for the PCOS dx? Usually if you know which hormones are acting up, you can pinpoint what is actually causing your symptoms and treat it more effectively.

Bunniq · 10-08-2007, 10:40 PM

Welcome to SC!

bearlover · 10-08-2007, 10:44 PM

My current gynecologist won't even do any hormone studies (he said it's not necessary, as they fluctuate too much).

It's been 24 years since I was dx'd, and if I remember correctly, it was largely dx'd based on my symptoms.

Aldactone wasn't particularly effective for me. Years ago, I don't think this disorder was recognized the way it should have been. I remember the doctor just shrugging his shoulders & telling me when I was 21 that "I would never conceive". Pretty much to accept it & move on.

They tried me on Glucophage, which for most people makes them lose weight. But it actually increased my appetite, which at the time wasn't good. So that didn't work.

I've been on just about every birth control pill there is. They would regulate everything for a while, then they would stop working & everything would go haywire again.

I have multiple doctors who treat various aspects of this arthritis. Most of them are reluctant to put me on any more medicine because of the caliber of medicine I take now. My gyn is being very insistent about taking these hormones now though. I've already had to have several endometrial biopsies & he doesn't want to keep doing that so frequently.

I'm hesitant about taking any new med without discussing it with my rheumatologist. I just had my first appt. with a new one the end of Sept. because the one I had seen for the last 2-1/2 years went to a facility my insurance won't let me see him at. I will be speaking to her in a week or so regarding bloodwork I just had done, so I will mention this to her then.

The PCOS is affecting my Ankylosing Spondylitis, or maybe it's the AS affecting the PCOS. It's like which came first, the chicken or the egg???

I'm anxious to start reading through all the info on the site here. Thanks for the reply.

Janet

Navi · 10-08-2007, 11:13 PM

Well, here's another idea...How high was your Aldactone dosage?

I just spoke with a new doctor today; long story short, I've had my own bumpy ride with really bad doctors and the wrong medications, and now this new one finally wants to put me back on Spiro. According to him, it used to be that Spiro (and Aldactone, I would assume) only came in 25 mg doses...which is now known to be WAY too low to affect anything. I used to be on 50 mg and got frustrated with it not working, now I'm starting on 200.

Otherwise definitely try some of the alternative remedies out there. I don't know much about arthritis or the medications that come with it so I really can't advise you on interactions.

And honestly, I would be wary of any doctor who just gives up and refuses to do ANY hormone testing whatsoever. It shouldn't matter how much your hormones fluctuate, heck, that's part of the PCOS problem! Not even an ultrasound? I say get a second opinion.