Sjogrens and hormones

[ModSupport]

@tina.king Yes, progesterone cream can and has harmed someone actually LOTS of someones. Bioidentical Hormone Therapy. (BHT) is anything but natural. The quality of a finished compounded drug product can be affected by many factors, including the quality of the active pharmaceutical ingredient used and the compounding practices of the pharmacy in which the product is created. The FDA requires drug manufacturers to meet stringent quality-control standards for the contents of each product and to document how quickly the drug dissolves in the stomach. However, compounded capsules can vary significantly in dosage and absorption characteristics, with no independent check of quality or variation. In 2001, for example, the FDA analyzed a variety of 29 product samples from 12 compounding pharmacies and found that 34% of them failed one or more standard quality tests. In addition, 9 of the 10 failing products failed assay or potency tests, with all containing less of the active ingredient than expected. In contrast, the testing failure rate for FDA-approved drug therapies is less than 2%.

Compounded “bioidentical hormones” are plant-derived hormones that pharmacists prepare and label as drugs. The products are claimed to be biochemically similar or identical to those produced by the ovaries or body. However, the relevant chemicals (steroids) in plants are not identical to those in humans. To make products that work in humans, raw materials from the plants must be converted to human hormones synthetically. Thus, to the extent that they are potent, the “bioidentical” products would pose the same risks as those of standard hormones—plus whatever problems might be introduced during compounding.

Many promoters of bioidentical hormone products advocate saliva testing to determine who might benefit from them. In fact, some nonstandard labs encourage consumers to order tests based on whether they have various symptoms.

For many years, the scientific medical community believed that hormone replacement therapy (HRT) at any age would reduce the risk of heart attack and stroke. This hope was dashed by the Women’s Health Initiative Study, which found that taking estrogen plus progestin for more than five years places postmenopausal women at risk for heart attacks, strokes, and several other serious problems [3]. HRT is now mainly prescribed for the short-term treatment of postmenopausal symptoms using low doses of an estrogen such as estradiol.

The risk involved in prescribing a hormonal product depends on its chemical composition and biochemical properties, not on how it was made. However, many offbeat physicians are prescribing compounded “bioidentical” products as though they are safer than standard prescription drug products. On October 31, 2005, the American College of Obstetricians and Gynecologists (ACOG) warned against these products and the saliva tests typically used by those who prescribe them. In strongly worded documents [4,5], ACOG stated:

There is no scientific evidence to support claims of increased efficacy or safety for individualized estrogen or progesterone regimens prepared by compounding pharmacies.
Hormone therapy does not belong to a class of drugs with an indication for individualized dosing. Salivary hormone level testing used by proponents to “tailor” this therapy isn’t meaningful because (a) salivary levels are not as accurate as blood levels and (b) they can vary within each woman depending on her diet, the time of day, the specific hormone being tested, and other variables.
Most compounded products have not undergone rigorous clinical testing for either safety or efficacy. There are also concerns regarding their purity, potency, and quality.
The FDA requires manufacturers of FDA-approved products that contain estrogen and progestins to include a black box warning that reflects the findings of the Women’s Health Initiative. However, compounded products (including “bioidentical” hormones) are not approved by the FDA and have been exempt from having to provide patient package inserts that contain warnings and contraindications for estrogens and progestins.
Given the lack of well-designed and well-conducted clinical trials of these compounded hormones, all of them should be considered to have the same safety issues as those hormone products that are approved by the FDA and may also have additional risks unique to the compounding process.

Speaking of poisons… Public Citizen an outspoken critic of both FDA and no friend of the pharmaceutical industry, is one of the strongest critics of BHT, labeling it “DO NOT USE” on their worstpills.org website. They went on to say the following:

“Compounding pharmacies have their own financially driven interest in selling untested BHRT drugs. The pharmacies do, in fact, make unsubstantiated claims about the safety and effectiveness of their BHRT products. The overhead is probably quite low for producing, promoting and selling drugs that are not FDA-approved and are made from bulk drug substances (powdered drug) of unknown quality from sometimes questionable sources.”

They continue,

“Proponents of BHRT, those benefiting economically from their sale, maintain that the right of women and their doctors to choose must be protected. This is a perversion of consumerism often put forward by producers of shoddy products. There is a more fundamental right that is being violated by compounding pharmacies: the right to a marketplace free of potentially dangerous untested products promoted for unsubstantiated uses.”

Why didn’t the doctor test? The simple answer is therte is no ACCURATE TEST Estrogen and progesterone levels vary day-to-day and hour-to-hour. Even multiple tests would be of little value. It would take a minimum of 57 data points (tests) to be even 32% accurate.

Interesting article: http://fij.org/fij_website/wp-content/uploads/2013/09/MORE.pdf

TJ

[tina.king]

All I can respond to that is you must have had better doctors than the rest
of us. Most of what I know is because I sought it out myself. As I said
before, my diagnosis came after endoscopy and them saying it was in my
head . Handed me a script for xanex(which I did not take). Since then I’ve
had whole host of doctors who contradict there selves, forget what they
told you last time and basically downplay the disease. I think most people
can use common sense.

[Stoney]

I am relatively lucky. I live in the metro NY area. I was lucky enough to find a rheumatologist that I really like early on, who is also very thorough. If I want a second opinion, it’s a reasonably short trip into Manhattan to access major medical centers, and there’s even some outposts closer. When my husband first saw a rheumatologist, I went with him and told him that he was never going back to that one.

It doesn’t mean that I don’t do my own research as well, but I can feel confident in my rheumatologist. And my eye doctor is also thorough, and has an understanding of how autoimmune conditions can affect the eye. Years ago when I was having vision troubles and we couldn’t get to the root of it locally, he sent me into the city for specialized testing, which confirmed the retinal inflammation that we suspected.

But even if you can’t find a good team of doctors within a reasonable distance, there’s no reason why you can’t keep your general practitioner in the loop. In many areas of the country (and the world), a good GP can take on much of the management of autoimmune conditions.

[tina.king]

Agreed, I live in southeast tn and my rheumy is not great, my eye dr
prescribes restasis after years of eye inflammation says I think this has
been going on for long time and I’m thinking well ok I’ve been coming here
a long time??? My gp is only decent dr I have and she found it with simple
blood test(positive Ana and ssb) after the dr told me was in my head, but
she knows little about the disease I had lost 20 pounds in short period of
time with no history of illness or anxiety problems. My dentist is also
uninformed , so forgive me when I have a lack confidence.

[JustAMom]

Of course I am not a medical professional, just a mother whose daughter finally found relief, despite all those 'medical professionals" she consulted. And truly it was in spite of. I would always advise caution in all things that involve our health, with careful consideration to current conditions and medications, of course. It goes without saying, we must be careful! I would advise everyone do their own homework before attempting any new treatment, whether presented by someone’s mom on the internet OR the so called medical professionals. All things must be considered and weighed regarding risk and reward, and decisions must be wholly yours. And decisions, of course, should always be informed ones.

I expect there are decent doctors out there, I hear about them occasionally, but from my personal experience and that of friends and family, it has been a full couple decades of some very bad experiences of doctors actually doing more harm than good. Terrible advice that caused real damage and unnecessary suffering. My faith in so called medical professionals has been seriously decimated. Perfectly happy to hear their advice if they have any, just much less prone to blindly follow it. They forever are throwing questionable medications at symptoms that are hit or miss in effect, and come with dubious side effects. So often meds pushed on myself and family members are never discussed in regards to any risks at all, it is simply never mentioned. I’ve even asked pharmacists when picking up meds and they totally downplay or shrug off the possibility of adverse reactions. They are either highly uninformed, or just plain careless. I see it as negligence, as this is peoples health they are being trusted with! Thank goodness for the small print in the literature and the internet. But yeah, multiple experiences of truly bad recommendations from doctors as well as inapplicable, useless, and harmful ‘treatments’. To tell all those stories would be a saga, but real damage was done. I’m so fed up with finding my family members in worse condition from trusting the half-baked advice coming from some of these doctors. Still they trust them even after this, because we are taught that the docs know whats best. I’m sure there are some good doctors out there, count your blessings if you have one. I’ve not found one since my favorite GP retired years ago, he was great. I have no GP myself right now because the last one was horrid and I do not know a single person who can recommend one they can say they actually have any confidence in or even like. It’s sketchy out there, it really is. And please don’t get me started on the FDA. Opinions are like… you know, everybody has one. Forgive my rant.

That being said, again, we all must take responsibility into our own hands and ultimately make our own decisions. Do your own research. Consult your trusted professionals of course, but do not trust blindly anyone with your health, ever. Personal responsibility is imperative. Gather information from everywhere you can, sort out opinions from the facts, consider all your options, and decide for yourself. It can be difficult and overwhelming but it’s your health your messing with, so invest the time and energy, it is most definitely worth it.

Never accept the “no cause, no cure” ideology either. It is crucial to consider cause if you’re serious about actually healing. When I’ve asked doctors their opinion on the cause of something, they always just respond with this blank look, like that is not at all what they signed up for, and they respond as if it’s irrelevant or unanswerable… Sorry, I aways look for cause because treating symptoms does not fix anything. I’d still be miserably ill today myself if I had not taken my healing into my own hands. Doctors had nothing for me but a couple meds that did next to nothing.Throughout the years looking into the various ills of friends, family, and self, I’ve come to suspect that the very root causes of the vast majority of them is the same in the end, possibly, but this is not the place for my theories, surely. Point is you must staunchly be your own advocate.

Bottom line, to stay on thread topic, is that Sjogren’s without a doubt has a hormonal link, and I would suggest that anyone suffering with this dreadful condition to give it serious consideration. Any doctor who does not address this well-established correlation is either terribly uninformed or wholly negligent. My journey with the daughter’s experience has taught me a lot about SS. Together with researching studies, scientific documentation, and reading many other’s personal experiences along the way, I learned that hormones very clearly and definitely play a huge role here, huge. No doubt about it! This is the primary reason for my posting to begin with, simply “omg, it was hormones!”

[tina.king]

Well said, exactly!!

[Emmie]

Very interesting, my diagnosis came during pregnancy and my last flare immediately followed a couple of highly emotional days around that time of the month, I had been having trouble getting pregnant and the doc found that my prolactin was high, he gave me another hormone to help, maybe what helped one cause harmed another, the autoimmune attacked my daughter’s heart and she now has a pacemaker, thank goodness for modern medicine

[Cole]

Just wanted to share a little of what I’ve been experiencing. And I think hormones have effects on so much and with added stress can definitely make for domino effect. I’ve never been one to go to drs. as I shoulda. I think I was 43/44 when gyn said I was post menopausal and my hormone levels were basically zilch. I took pempro for a little over a year and paranoid by all the heart problems n such it causes stopped taking it for last couple of years. The last flare I’ve been having seemed to last forever (months). And although the ra Dr. Suspected I had ss he “saw no reason for follow up appointments” after my lip biopsy. My GP then offered xanex and I gladly​ took it. Even my bones seemed to ache. so I saw my GYN for density test and he scolded me for not taking the pempro. So I started back on it and couldn’t believe how much better I felt by just the next day. It was unreal. I still have some dry eye, muscle spasms, and strange pangs here n there, thin hair but overall I do feel better and not like I’m on a death bed every day. Hormones help the bones store calcium and low calcium can cause some rashes and it makes me wonder if that in turn adds to some of the ss rashes.

[leeanngiles]

I hear ya girl I’ve had this since I was 25 and I have nothing left I feel.

[laclarky]

I know this an old post, but thought I’d see if anyone could have advice/bend your ear.

I’m wondering if my hormones and Lyme triggered my sjogrens. When I was first diagnosed I didn’t have overtly dry eyes or mouth, but was having some neuro issues and muscle issues. At that time I had a positive ana, ssa, and barely positive RF. My esr was elevated too. My son was almost 2 and I had an IuD put in after his birth.

I had a lip biopsy done that showed nothing last year. I also got my IUD removed because I felt like it was contributing to some of my issues as I kept having frequent spotting and such.

Bring me today. In October I had the avise ctd test done by a new rheumatologist. He said it was still positive for ana, ssa, rheumatoid factor and he said also ssb. He’s still on the fence if it’s sjogrens or lupus because I don’t have the “typical” manifestations of either.

In the last year I’ve noticed some things seem to be worse prior to my period… I get swollen hands and painful, my muscles hurt worse. My period was religiously every 26 days, now it’s varying. Last month it was a week late. This was really noticed when I took the “plan b” pill one night and the hormones wrecked me. I felt awful.

I have been paranoid to the extreme that it’s something other than lupus or sjogrens. I was really afraid Of scleroderma because of my hands, but I have had 2 rheumatologist say they weren’t concerned about that so I’m keeping some paranoia at bay. Let me remind you I had the full work up of stuff with a false ct scan saying I had an apple core lesion that the colonoscopy proved wrong. My spine is messed up- reversed cervical curve, lumbar shows curve and rotation to the left… waiting for the results of my mid spine. I also have tendonosis in my right shoulder… so it’s been rough.

So I was just wondering if anyone else saw a pattern around their cycle? I’m going to be 37 next month.