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ScreaminMeanie
02-01-2011, 01:12 AM
I've heard someone mention on here that HRT is not a good thing if you have vasculitis. Neither my OB/GYN nor my Rheumy has said anything about it. I hate to give up my estrogen patches and go through the hot flash thing again, but I suppose that's the least of my worries at this point......

pberggren1
02-01-2011, 02:09 AM
I've heard someone mention on here that HRT is not a good thing if you have vasculitis. Neither my OB/GYN nor my Rheumy has said anything about it. I hate to give up my estrogen patches and go through the hot flash thing again, but I suppose that's the least of my worries at this point......

What is HRT? I'm not even sure what estrogen is but I think only women have it.

Palmyra
02-01-2011, 02:30 AM
pberggren, you are sooo cute! And, such a real man...(said in a nice way!) HRT is hormone replacement therapy. Yes, you do have some (very small) amounts of estrogen, but women have lots.

Screaming Meanie...my daughter was advised not to take the pill, or any form of hormone therapy due to increased risk of blood clots with the vasculitis diagnosis. I don't know about the low levels in the patch, but it would be worth investigating more with your docs. Flashing is not so bad..just layer clothing :wink1:

DEE
02-01-2011, 02:47 AM
Screaning Meanie Im not trying to scare you but no one told me to stop taking HRT and i had blood clots last year which they cant prove was caused by HRT because of all yje other drugs im on when admitted to hospital for blood clots was taken of HRT the same day
Had hot flushes for about a month :rolleyes1: maybe worth asking about as i was under several dr s at the time and nobody had thought about tellimg me not to take it
My daughter has Crohns disease and she was taken off for the same reason
hope this will be helpful DEEx

Sangye
02-01-2011, 03:08 AM
You should definitely not be using HRT. Weggies are 23% more likely to get blood clots and adding another major risk factor is asking for trouble. You can live with the hot flashes. I've had uncountable numbers of clots in my legs and lungs. Believe me, you do not want to go through that. Any one of them could have killed me or caused brain damage.

ScreaminMeanie
02-01-2011, 03:10 AM
Very helpful, all of you (except pberggren1! LOL). I will talk to my Rheumy about it this week. My OB/GYN has already suggested a couple times that I get off the estrogen because I have occasionally severe post-menopausal bleeding.

NicShaf
02-01-2011, 04:30 AM
Wow, ScreaminMeanie, thank you for bringing this up. I had no idea, and my Rheumatologist told me to talk to my General Practitioner about the pill to prevent pregnancy! Scary! Now that you all mention it, it makes so much sense that Vasculitis would be a bad mix with something that can cause blood clots.
This is yet another reason I'm so grateful for this site!

ScreaminMeanie
02-01-2011, 06:19 AM
Even though I'm sure I would survive hot flashes, my marriage may not! ;)

stikker
02-01-2011, 12:28 PM
My hot flashes are much much worse on Prednisone. Just a warning. They're almost unbareable.

ScreaminMeanie
02-01-2011, 01:03 PM
I figure since I've been on estrogen replacement for 20 years, and I've been at the lowest possible dose for at least 5 years, AND since it's winter, now would be a good time to get off it. Maybe by summer the hot flashes will be over. ;)

The MTX also gives me hot (and cold) flashes already. But I will NOT say it can't get any worse! LOL. Hopefully I'll get to talk to my doc tomorrow and get her opinion. I suspect I'll have to stay on the progesterone since I haven't had a hysterectomy, but I want to make sure all of it's okay and not just do this on my own.

elephant
02-01-2011, 01:07 PM
Screamin, you will survive, I had severe hot flashes for two years. I turned down the estrogen because I has a blood clot at age 16. So I knew I was playing with fire, if I took it.

ScreaminMeanie
02-01-2011, 01:43 PM
I have gone off the estrogen a couple of times over the years for a month or two at a time, so that I could be tested to see if my ovaries were functioning at all (they weren't). The hot flashes were awful, and never stopped until I went back on it, but I was on about twice the dosage strength back then. A couple of times lately I have forgotten to change my patch after a week (for as long as a week), and didn't have any hot flashes. But I've been noticing the last few months that every time I put on a new patch, I have bleeding for a couple of days, sometimes heavy. I know the prednisone affects how estrogen is used in the body, so this is something I've been thinking about for awhile. Then after I read a post from someone who said his wife had serious problems with blood clots because of HRT (sometime last week, I think), I got really nervous about it.

Pretty silly when I think about it......I went on the pill when I was 16, and stayed on it until I was about 32. Went off it for a couple of years, then had the WG DX. Within two months of starting CTX, I started having hot flashes (thought it was a side effect of the CTX). Turned out it was menopause, which I guess actually was a side effect of CTX.....ha ha! They put me on HRT immediately. So, in my entire adult life, I've gone a total of about 2 years without some kind of estrogen supplement.

Sangye
02-01-2011, 02:23 PM
So, in my entire adult life, I've gone a total of about 2 years without some kind of estrogen supplement.
I suggest you find a holistic doc who knows how to work with hormones. Such extensive use of synthetic hormones causes profound imbalances that must be corrected.

ScreaminMeanie
02-02-2011, 12:55 AM
They're not synthetic - at least not since I stopped taking birth control pills - I couldn't tolerate the synthetic ones after I went through menopause. Same thing with my thyroid replacement - I have to take natural thyroid. Granted, that's from cows, but it's the kind that has both T3 and T4. ;)

chrisTIn@
02-02-2011, 01:04 AM
Twenty years is quite a long time to be on hormones...

I had HRT for one year, just before my WG-diagnose.
I wasn't aware of the fact that I might have an auto-immune disease.

Sangye
02-02-2011, 02:03 AM
Screamin, so you're on natural estrogen?

ScreaminMeanie
02-02-2011, 03:03 AM
Screamin, so you're on natural estrogen?

Yes, and natural progesterone. I went to a holistic doctor for many years back in Florida because my regular docs were unable to resolve the problems I was having with both my HRT and my thyroid replacement. I really liked that doc, but he retired a few years before I moved out here, and I couldn't find anyone else as highly recommended, so I went back to (different) traditional docs. I also found a good holistic doc right after I moved here, but he stopped taking insurance about 7 years ago, and I couldn't afford to see him any more. I think he ended up closing his practice a couple years ago because most all of his patients were in the same boat as me. :p

Skicpa
02-02-2011, 11:02 AM
I am not sure if it was my intro post you read, but my wife was put on HRT and suffered a stroke shortly thereafter, after early menopause caused by cytoxan. There was no direct link between the HRT and the stroke, but nothing else to link a cause to, no other meds or health issues. I think she was around 49 at the time.

ScreaminMeanie
02-02-2011, 12:01 PM
It must have been your post I read, Skicpa. As sorry as I am for you and your wife's experiences, I really appreciate the heads-up. I know that the WG itself creates risk of blood clots/stroke, as do many of the medications we have to take, but anything I can do to minimize the risk seems like a good plan. Still haven't talked to my doc. I was so busy at work today, I forgot to call.

ScreaminMeanie
02-10-2011, 12:54 AM
OK, one week into no estrogen, and the hot flashes are here with a vengeance! I haven't had many during the day, unless I do some fairly intense physical activity or get stressed out. At night is when the fun begins. I've been waking up every couple of hours, soaking wet. I'm very glad it's wintertime, and that we're having a particularly cold winter. I can throw the covers off my top half and within a few minutes be cool enough to pull the covers back up and go back to sleep.

I had a doozy the other day, though. I was talking to a friend who has been very ill with kidney stones/infection. I had a hot flash which turned into a dizzy spell and I almost passed out. Supposedly that is not an uncommon symptom of menopause (the light-headedness), but it was a first for me. With the WG thing also, it scared me a bit.

Sangye
02-10-2011, 02:22 AM
Add some soy to your diet and see if it helps.

ScreaminMeanie
02-10-2011, 03:17 AM
Add some soy to your diet and see if it helps.

Now, see, this is one of the things that drives me crazy! My last holistic doc told me to stay the hell away from all processed soy products (fresh soybeans, i.e., edamame, was the only thing he said I should be eating), because there was a link between processed soy and breast cancer. With a history of breast cancer in my family, plus prior use of Cytoxan, I have received so much conflicting advice for the last 20 years! Take estrogen, don't take estrogen, no, DO take estrogen. Get more sunlight, no, stay out of the sunlight! Eat lots of soy products, don't touch processed soy, no, do eat it - GAAAAAAAAAAAAAAAAH!! ;)

Sangye
02-10-2011, 03:42 AM
I didn't say to add processed soy. I said add some soy. I also repeat what I originally suggested, that you see a holistic doc for help tailored to you.

ScreaminMeanie
02-10-2011, 05:43 AM
I didn't say to add processed soy. I said add some soy. I also repeat what I originally suggested, that you see a holistic doc for help tailored to you.

Sorry if I seemed to be blasting on you - I really didn't mean it that way! The hot flashes make me cranky!

The last time I checked, the one holistic doc in this area shut down his practice a few years ago because no one could afford him since he didn't take insurance. On the advice of my previous holistic doc back in Florida, I tried a number of natural soy supplements which are supposed to help with menopausal symptoms. I tried literally every one the natural foods store carried (a couple dozen at least), and none of them worked. Then the holistic doc I went to here before I could no longer afford him ($150/visit with no insurance reimbursement - that's half my household monthly food budget!) told me I should *not* be taking them. Nobody ever bothered to explain to me why most foods containing soy are considered to be processed, but supplements containing soy are not....except by some people. Obviously, I'm totally wrong, but to me, if it's not the fresh or frozen soybean, it's "processed."

After that I got frustrated and decided to just deal with the menopause symptoms on my own. I'm still at that place. And I still eat a lot of edamame.

Sangye
02-10-2011, 06:11 AM
Sounds like you'll probably need to travel a little to get to a holistic doctor. I don't have a good chiropractor in Maryland and have to drive to Virginia once a month or more. It's only 30 miles, but I have to go through the worst DC traffic the whole way. One trip to him easily eats up 5 hours.

When I lived in northern Arizona my chiropractor was in Phoenix-- a 3 hr drive (one-way) across desert. He treated me before I got sick, which meant I'd close my office for one day a month and spend the day driving. It cost me a day's income, car expenses and I'd be exhausted. When I got sick, I continued going, even when I could barely stand, was dragging oxygen tanks, and I had to beg rides. A good doc--holistic or medical-- is hard to find and I've always been willing to do whatever it takes to get to one. I hope you'll do the same, too. You can really mess yourself up by trying to treat hormonal imbalances yourself.

ScreaminMeanie
02-10-2011, 06:48 AM
Sounds like you'll probably need to travel a little to get to a holistic doctor. I don't have a good chiropractor in Maryland and have to drive to Virginia once a month or more. It's only 30 miles, but I have to go through the worst DC traffic the whole way. One trip to him easily eats up 5 hours.

When I lived in northern Arizona my chiropractor was in Phoenix-- a 3 hr drive (one-way) across desert. He treated me before I got sick, which meant I'd close my office for one day a month and spend the day driving. It cost me a day's income, car expenses and I'd be exhausted. When I got sick, I continued going, even when I could barely stand, was dragging oxygen tanks, and I had to beg rides. A good doc--holistic or medical-- is hard to find and I've always been willing to do whatever it takes to get to one. I hope you'll do the same, too. You can really mess yourself up by trying to treat hormonal imbalances yourself.

I really do understand the need, I simply don't have the money. With my husband currently having no income (he's self-employed in a business that tanked three years ago and shows no signs of recovery, we own the business property, and we can't sell it so that he can do something else), I can't even afford an extra 10-mile round trip into town once a week. That would mean I'd have to buy three tanks of gas some months instead of just two, and I just can't afford it.

I guess I just see menopause as a perfectly natural condition, and not doing anything at all about it is not necessarily a bad thing. Everyone who's been through it tells me the hot flashes will eventually stop. At some point I may want to try some other natural product to help with the dry skin, etc., but I figure while I'm in this WG flare, the fewer "unnatural" things I'm doing, the better. All of my docs (including the holistic ones I've seen in the past) have been urging me to stop the estrogen replacement for some years now. I'm just taking their advice, albeit a few years late. LOL