clots and hrt

[Raglet]

this is a report of a small study about estogen patches and clots.

I also have some other studies that I must dig out and post, as I think this is terribly important information for women with autoimmune disease.

So often we are on long term prednisone (my maintenance dose is 20mg), and estrogen is terribly important for bone health.

Many of us go through menopause prematurely due to iv cytoxan, I myself went through menopause 20 years earlier than my mother due to iv cytoxan.

I really need estrogen to help maintain my bone strength, plus of course I am on etidronate and calcium (etidronate is a similar drug to fosamax).

So I use an estradiol patch with the blessing of my rheumie (I have aps, with previous arterial clots and stroke)

I look forward to further studies being done

This articles requires a Medscape registration .... it only takes a few moments, and there is a wealth of information of a wide range of topics there

http://www.medscape.com/viewarticle/459782

Raglet

[RosemaryP]

Raglet I do not have APS, but I do have Osteoporosis. Early not medicated menopause, family problem.
I do clot, I have a clotitng disorder, and in my mind I suspect people with Sjogrens or secondary Sjogrens have a sort of clotting disorder anyway.
I take the same calcium mix you do, will let you know in a few months if there is any difference in bone density to 3 years ago.

[Raglet]

got my fingers crossed that your bone density will have improved Rosemary !

I seem to have got lost on the waiting list for my next bone density check, I must remember to ring them on monday and check on progress.

I think it is terribly important that we get as many goodies for our bones as we possibly can, so I am really excited by this new willingness to look at hrt as a possibility for women with APS.

We all know that estrogen is important for bone health, and now it is looking like having a clotting problem does not automatically rule out hrt.

Yahoo is all I can say.

I will keep you all posted about this as I definitely plan to keep reading up about this one

cheers

Raglet

[RosemaryP]

Bone Density tests, was put as urgent, supposed to be within a month, but as the funding is for 70 tests a week, urgent is 6 months! I am about 3 months away from a appointment. I am pleased to here you are doing well on this.
How was the retail therapy? I hit the sales again today, same shop and bought more, but I did get very good bargains for myself. Ballantynes sale is the equivalent of Smith & Caughey. Bought some brilliant summer tops for $5 each, also managed finally to get some toys for youngest grandson for Christmas, now all I have to get is Christmas presents for 11 year old grandson. Any ideas anyone?

[Christine UK]

hi there raglet...once again i must stress how everyone is differant and there are many outstanding descussions regarding hrt etc with aps....so i think we all need to be very careful and much discussion is needed with the patients consultant....

[RosemaryP]

Of course we all agree what suits one does not suit another.
Hey Raglet somewhere in the cobwebs of my mind, I remember you sitting permanently on prednisone (about 20mg a day) , is that still correct. I have not had any since June and this year was the first time for a long time that I have sat on it for six months, though not a high dose. It was not for Lupus, other problems.

[marybri]

Hi,
I agree with Chris on this.

At the moment HRT is a highly emotive subject, and the jury's still out.

I think its something for each invidual to discuss with their own doctor.

Having said that however,reports tend to indicate that the adverse health issues
are causing women to "burn their patches".

Mary

[Sannie]

There is no doubt that the jury is still out on this subject.

Clinical studies do indicate that ANY hormonal changes can influence lupus and/or APS symptoms - particularly estrogen.

If you want to take HRT for whatever reason, please discuss all your options with your doctors - and then make an informed choice with your doctors support.

[Lily]

On an estrogen gel (similar deal to the patch, absorbed through skin) my photosensitivity was far, far worse (it's well documented that estrogen can actually cause photosensitivity) and so were most of my other symptoms! I had my first (and only) pericarditis episode and my pleuritic chest pain was unbelievable. I almost had a stroke, they are still thinking it was a TIA. My livedo reticularis was far worse, like a lighthouse beacon really!

Estrogen is one of those things, for some it's OK and for others its a really bad idea. Trandermal, oral I researched/tried the lot. Every drop of blood we have is filtered by the liver anyway, so those quoting that trandermal bypasses the liver, then technically it's not true. Whilst some goes straight to estrogen receptors, there is always some circulating in the blood-------------> which then goes through the liver!

Take care,

love
Lily

[lupie lou]

:( ;) :(

Ok Guys now ya scaring me :( I take Elleste-solo 1mg a day, have been ok with this was on patches but never stuck and then went onto implant then my ryme said tabs instead. I had a Hystrectomy (total) done 18 monthes ago so need HRT as doc said im 36 and need it cos i would age over nite and for me bones ect cos op is in fam and i already have RA. Now i asked if this is safe he said its a mild dose and its only replacing what me ovaries would have done if id had them?and its not adding any more into me body than that?
now is this still a worry? has any or does any one take this? amount? also does any one no what would happen if i stopped it, cos i would if i new i would be ok and not age ect or grow a beard lolol i wouldnt take it? the only thing i get from gp and hos is what ive said above ;) mabe when i can get to the age what menerpaurse starts approx and stop it? any feedback would be gratefull on this one as im due to see me specialized soon and i can ask :)

love lou xxxxxxx

[Raglet]

Lupie Lou, don't panic !

For those of us who experience premature menopause (menopause before the age of 40) the situation is very different.

By taking estrogen, we are only replacing the estrogen that our body would be providing ourselves with had we not gone through premature menopause.

The increase in breast cancer in the study was actually very small, and it seems likely that the tumours were actually pre-existing (ie were there before the study) and the estrogen brought them out (this happens occaisionally with estrogen dependent breast cancer).

here's a link that you may find helpful about this.


http://www.the-bms.org/lan_resp.htm

Also, the type of estrogen you are taking is bio-identical (estradiol, which is beta-17-estradiol, which is chemically identical to the stuff that our bodies make).

So, you are only getting the same chemical compound you would be getting at this stage of your life had you not experienced premature menopause.

I am PM-ing you a link to a site about premature menopause that has a bulletin board on it, incase you want to follow this one us.

At the end of the day, some women find that taking estrogen affects their lupus, others don't.

There is a study being done on lupus and hormones (I think it is called SELENA, or something, Dr Petri is involved in it), as far as I know it has not finished yet.

But, I await their findings with interest.

I think that it is really important that those of us who have experienced premature menopause realise that we are in a very different situation from women who experience normal age menopause. We are still meant to have higher levels of estrogen in our body, this is entirely normal for us.

Also, a lot of the problems with hrt/bcp is not so much the estrogen, but the progestin used.

There are many ways around this .... using biodentical progesterone is a possibility (prometrium), or vaginal progesterone (crinone or prochieve, applied vaginally it avoids the systemic absorption which is what causes a lot of the problems). Or, some women (like me) choose to have a progestin iud inserted, which applies a progestin directly to the uterine lining, and thus avoids the systemic consequences.

Hrt is a really complex area. I think that if I experienced normal age menopause, I would try to do it au naturale, no hrt. But for someone in my position, iv cytoxan shut down my ovaries overnight in my early 30s. This is a very different situation than someone who has a gradual menopause over 10 years.

There are a group of us who have very severe lupus requiring iv cytoxan, and we tend to be the ones who experience premature menopause. Our needs are very different from normal age menopausers who are meant to have lower levels of estrogen.

cheers

Raglet

[Lily]

Lou :love: Whenever we talk about HRT it seems to create havoc doesn't it!

Bottom line is like everything else........it's such an individual thing. Yes it's important if you are young and have had your ovaries removed but only your docs can answer whether they think it is contributing to your Lupus symptoms or making your condition worse. Each case has to be assessed individually.
You could ask ten doctors and get ten different answers............bottom line is no-one knows for sure :wacko:
My Immunologist said some women just can't take it, however he didn't take me off it. When I made the decision to go off he was pretty happy though! A Rheumy I saw said I could take it again because my bloods were negative for Anti cardiolipin. He said if I had that antibody he would not want me on estrogen. So then I explained that my livedo etc. was so much worse on it although it gave me other benefits which seemed to change his view a little, he was less keen about prescribing it and didn't. They need all the facts in order to help us make the right decisions.

Each of us is an individual, we have individual risk factors and family traits, they all have to be taken into account when deciding things like this.

For me I feel safer off it, my mother died of a massive stroke/cerebral hem, so I have a big risk factor there. Besides I did keep my ovaries although they quit for a long time after my hyst and don't function all that well now so I'm not in the same boat as someone without ovaries and I'm 45. Adrenal glands do (in natural menopause) take over most of the function of ovaries, by converting androgens to a weaker form of estrogen. But if you are young with no ovaries then it's a big ask and you also may find a huge drop in sex drive. You have suddenly been thrown into meno well before your time and adrenal glands may have trouble picking up the slack. Especially if our adrenals our already working overtime from trying to deal with autoimmune. Estrogen enabled me to get some sleep and relief from vicious hot flushes in those early days and I needed that. If I had no ovaries then I'd be weighing up the pros and cons, based on my individual circumstances and how I felt. I do know women who are not on it or only on vaginal estrogen for atrophy etc. who have had their ovaries removed. They either have Lupus or they had breast cancer/other risk factors and can't take it. They pay attention to lifestyle issues, general health, take supplements and/or meds for their bones etc. They do OK and they don't fear for their life, although they know that estrogen would help some things for them. The risks outweighed the benefits and that's how they made their decisions. That's how we all have to make them, with the guidance of our doctors and what we can learn about ourselves. As you say maybe it would be an option for you to take it until you are older and nearer to meno age anyway, then reassess it. That would be ten years or so and by that time they may know more. But it will always be a hot topic and will always have a million different views touted by docs! Even the trials they run can be a bit amusing. There is a 50% placebo effect with estrogen in a lot of trials, so how do you measure the effectiveness of something like that? It's the long term effects of estrogen vs no estrogen that that are gathering data on right now. And that will take time but it should happen in our lifetime. And they are coming up with all sorts of other alternatives which may be safer and relieve symptoms/prevent osteo for those that need it. I am interested in the bio-identical hormones that are not mass produced by pharmaceutical companies. I think they should be looking more closely at low dose, less potent things for meno. But seeing as the drug companies fund a lot of trials and research then they aren't getting a fair run I feel. There are no big bucks in anything that cannot be patented by a drug company, given the right formula/the same chemical makeup our own hormones had then most pharmacists could mix up a batch and dispense it if they wanted to. Some pharmacies already do this and some women have gone this route. But without proper trialling then you are not sure what you are getting. It's a catch 22 situation. The docs won't trial them because no-one has the money to fund these trials. But they will trial a HRT that a multi-million dollar pharmaceutical company has developed, because the funding is supplied. It was a real eye opener researching some of this stuff. I was appalled at some of the things that go on. But at the same time I am wary of claims made by those who do not have proper trials run on their so called natural bio-identical hormones - we don't really know what's in them. I guess we'll have to let the heirarchy fight it out LOL!

Do you think your symptoms are worse or disease revved up since you started taking it? But then even that is hard to answer because surgery alone can also flare disease, so which was it hormone changes brought about by surgery or surgery itself :wacko: :wacko:

Sorry for the long drawn out answer, but these are my views based on what I've experienced and learnt over the last few years. I think it's important for every woman to make decisions based on their individual case. I get riled when sweeping claims/general statements are made that could make some people think something is safe for them when it mightn't be or that something is unsafe when it may actually benefit them.
It's like anything knowledge is power and when we talk about HRT by itself or even HRT for those who have an AI disease then the jury is still out.

Take care and don't worry, you have enough to contend with!

:love: :flowers:

love
Lily

[Raglet]

Lily I totally agree with you, it is a very individual thing, and hrt is definitely not for everyone.

Personally, I have never noticed a difference in my lupus with or without hrt. My lupus sucks either which way.

I trialled going off hrt for a few months (phew, talk about melt down <g>) but it really didn't seem to make a difference in my lupus. It still sucked.

I have had lupus since childhood, its always been pretty out there, so I figured I might as well be on hrt as off it. And my rheumie agreed, though she tells me she would not want me on bcp. Actually, I have had a small stroke myself, plus clots in arteries in my chest etc etc, so I have some pretty major clotting factors myself.

To me this is just such a fascinating topic, I am just very pleased that studies are being done focusing on different risk factors associated with different delivery systems.

I am not sure about the patents and bio-identical estrogen though ... the big companies are right in there making bio-identical estrogens along with their horse wee estrogen (premarin). They are making big bucks out of it already.

But, I definitely agree with you on the funding for trials, makes one wonder about the results of any test or trial.

My premature meno wasn't caused by surgery, but by iv cytoxan that I had for my CNS lupus. It shut my ovaries down overnight (menopause is a common side effect of iv cytoxan - one that they usually forget to mention ahead of time !). It didn't much matter coz fortunately I wasn't wanting more children. So when I hit meno I was pretty ill, from the cytoxan AND from lupus (which was unresponsive to cytoxan). Only thing that works for me is steroids unfortunately.

sigh, I gotta get myself into bed or I'll never get up in the morning ......

Raglet

[lupie lou]

:wave:

Hi There

thanks for ya advice ect i wil look into this my lupas aint got no worse by taking hrt but aint got any bettre either lol.
will bring this up at me next app thanks again for ya advice .

love lou xxxxxxxx

[Sannie]

Let's just remember that HRT is not advised for us all - and we all need to make an informed choice about it if and when WE choose to do so.

There is no reason to think that chemo treatment will send us all into premature menopause either - any more than lupus will.

There are women who have had chemo for their lupus and have gone on to find their menstrual cycle starts again - and some have then had a healthy child to follow.

[sam101360]

I thought I would add my 2 Cents....Pennies that is...I was 34 when I had ovarian cancer. I am now 42 and HRT saved my life, marriage and sanity...However if I continue to have problems with it because of the lupus, we will adjust and I will stop taking the HRT.

My dermy said absoultly no patch...pills only as the patch may lead to skin lesions (I have SCLE).

So far, other than a chemical imbalance that caused water retention with the introduction of Plaquanil, things have been OK, however I have only just been Dx in June and am on the upside or is that downslide of my first flare....Things can only go on from here and I will have to wait and see what will happen.

Thanks - Stephanie

[Raglet]

Sannie, I have to disagree with you on the menopause and cytoxan risk.

I have done a lot of reading on this, and talked to many specialists about this.

For women over the age of 30, premature menopause is not uncommon with iv
cytoxan.

By the mid to late 30s, it becomes VERY common with cytoxan.

I know many many women this has happened to.

Any chemotherapy drugs targets tissue in the body that is very 'active' (which is why it helps us with our overactive immune systems).

So, the ovary is very vulnerable seeing it is such a busy little organ, and those little eggs get hammered.

Even women below the age of 30 may go into temporary menopause with iv cytoxan ..... they often come out of menopause within a year of stopping cytoxan. But, if they have had a temporary menopause (high fsh and lh, as opposed to just menstrual irregularities) they may not get their fertility back, even if their cycle returnes.

This group of younger women who have had iv cytoxan are at risk for a earlier than usual menopause even if they do regain their cycle/fertility after chemotherapy.

It is really important that women are aware of this, because sometimes ovarian function can be protected by taking analogues DURING chemo.

in the following quotes, cyclophosphamide (CYC) is another name for cytoxan. Ovarian failure is the 'correct' term for this sort of menopause.

Ovarian failure, and premature menopause in particular, is common in patients with systemic lupus erythematosus, with the most important risk factors being cyclophosphamide dose and age.

http://www.ncbi.nlm.nih.gov/entrez/query.f...9&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11717709&dopt=Abstract)


Cyclophosphamide therapy induces ovarian failure in premenopausal women affected by systemic lupus erythematosus. Tincani A.

http://www.ncbi.nlm.nih.gov/entrez/query.f...5&dopt=Abstract (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11579705&dopt=Abstract)


Obviously, those of us who have iv cytoxan are very ill at the time and have to have this treatment no matter the outcome, but menopause is definitely not uncommon.

I know women who have experienced it in their late 20s after cytoxan treatment, the dose given and duration of treatment seems to be the big issues

I was in my 30s when I had iv cytoxan and it caused overnight menopause, much to my surprise as no one had warned me of this side effect.


Raglet

[Lily]

I think what Sannie meant was that not everyone who takes Cytoxin will end up in premature menopause, for some it may be true, but it's not a foregone conclusion, it won't happen to ALL women. Those who need to have it should not be worrying about that and delaying life saving treatment because of the fear that it MAY send them into menopause. Surely menopause is better than losing your life. We need to keep things in perspective for those that might just stumble upon this topic and get stressed out by something that may or may not affect them.

Just thought I'd clarify what I meant about the bio-identical hormones. I am aware that pharmaceutical companies are now marketing 17b estradiol preparations and I was on one of those, the gel. It is identical in chemical makeup to what our ovaries made, but ovaries also make other forms of estrogen, less potent forms~estriol and estrone and I think these deserve closer investigation. I also think a trandermal form of progesterone needs marketing too. At the moment it can be purchased here from compounding pharmacies but only with a doctors prescription and a lot of docs will be very reluctant to prescribe it. I believe some preperations are available in the USA without prescription and they are not always reliable in content and strength. I also believe that in Europe it is more freely used for perimenopause. The USA has an oral form in Prometrium but it is not available here yet.

Even the bio-identicals marketed by drug companies need some other ingredients besides the active one 17b estradiol. The patch has an adhesive which gives some women a bad skin reaction as was mentioned above. The gel I was on was less troublesome as far as application and absorption but it did have something in it that made it smell like a chemical factory :wacko: although it was classed as 'natural estrogen only'. The oral have all sorts of things in them too as other oral medications do. So sometimes it may not even be just the actual estrogen but all the other junk in there. The only natural estrogen as far as I'm concerned is the one your ovaries make LOL. They've done a pretty good job of mimicking that but they can only imitate nature so much, there will always be some other things thrown in.

The bottom line is that if you are young and you have had your ovaries removed before natural menopause age then estrogen can and does help some women maintain a decent lifestyle, which in turn helps their overall wellbeing. If it doesn't stir up lupus symptoms and it is monitored by your doctor and you feel better on it than off it then you have probably made the right decision. But further studies and trials will determine it's long term effects, right now we just don't know. I think a preferable option would be to do more research on female conditions that lead to ovarian problems/hysterectomies in the first place and hopefully one day they will! Treating the underlying problem has got to be better than taking out organs that have been affected by disease. But that goes for many diseases/conditions, be assured they are working on it though. Medicine has made many advances and will make many more in future years. It's good that women are prepared to openly discuss these things moreso than they were in the past. If we scream loud enough they may hear us :D and thankfully we have more access to knowledge now than ever, so we can feel confident enough to argue a point and not be labelled a nut case or difficult just because they can't work us out.

Girls just wanna have fun, don't they know that ;) :D :P :lol:

love
Lily

[Sannie]

Thanks Lily!

That's exactly what I was trying to say.

There are definately those of us who have had chemo treatment for our lupus and have NOT developed an early menopause at all.

Maybe this subject would be more appropiately discussed on a site for early menopause.

If anyone here is reading this thread I am sure they are going to be quite alarmed if they are starting or, indeed, are having chemo treatment to treat their lupus symptoms.

THEREFORE, THE MODERATORS WOULD LIKE TO SAY TO YOU, PLEASE ENSURE YOU DISCUSS ALL YOUR POSSIBLE TREATMENT OPTIONS WITH YOUR DOCTORS.

DO MAKE SURE YOU KNOW ALL THE RISKS INVOLVED BEFORE YOU START ANY TREATMENT FOR LUPUS AND/OR IT'S SECONDARY COMPLICATIONS.