Perimenopause versus sjogren's?

[LisaMarie]

What if I don't have sjogren's (all tests have been negative) and it is just perimenopause?

I've tried mentioning to my doctors everything that crosses my mind.  I feel sure I've mentioned to them about my periods being only 3 weeks apart and this time try 18 days apart.  I do have my yearly exam with my gyn on Feb. 1st and I will talk to her about it. 

I don't mind whatever the diagnosis is because the symptoms are getting better to deal with...probably because of the plaquenil.  But what if it is perimenopause and there is a better treatment plan that will help everything instead of what I call the nickle and diming things.

Either way, I'm grateful for you guys being here.  No matter what the diagnosis is, I know that my symptoms are real.  I don't feel like I'm making things up or just plain crazy.  I just want answers.

Of course, perimenopause does not explain my dry eyes.  I've had them forever.  But maybe I just have extremely dry eyes and they are sensitive? 

I'm rambling.

[Jellyb]

Hi Lisa, I feel the same way sometimes too. My labs have always been normal and I toss around in my head that maybe the reason I feel better is not from my low dose of plaquenil, but from my new lifestyle/ gluten free eating ect. But then I will have a day with swollen parotids and flu like achiness ect and my eyes are bad those days and the reality comes back.

I think that denial is one of the steps of grieving I guess for what we miss. Our old selves?

[meow]

It's not perimenopause. The only commonality with that is brain fog, and maybe temperature sensitivity. Been there, done that!!! You gyn might make some other connections, but unless he/she is very familiar with SJS, it might be more confusing than helpful.

[Scottietottie]

Hi - about 7 years ago now I joined this forum and I was already using a thyroid forum and a menopause forum. The overlapping of symptoms is amazing. I decided against HRT because I wanted at least one lot of symptoms just to GO.

I was asking my GP about night sweats the last time I saw her - and having a generally broken thermostat. She dismissed it as menopause symptoms. I'm 60. I'm over the menopause. I know she's wrong. Lots of stuff does overlap though.

Take care - Scottie 

[lolo1979]

Hormones are undoubtedly involved, in my opinion.  My immune system worked just "fine" (relatively speaking) prior to me having my two kids.  I had my first son, then got pregnant 1 year later and had an early miscarriage. The miscarriage set everything in motion.  I immediately went dry - mouth and eyes. Got pregnant again around the same time, so HOPED it was just the pregnancy.

That pregnancy was successful, and about 6 weeks postpartum, all h-ll broke loose.  I was still dry, and added on tingling/neuropathy, joint pain, and major fatigue.

So something about the quick change of hormones set it off for me, no doubt. I think a lot of others on this site have similar stories (as far as the hormone changes setting things in motion).

That doesn't mean you don't have Sjogrens, just means that your hormones might have impacted its onset.  I would think if the plaquenil is helping your symptoms, you probably have it.  I know that's probably not what you want to hear    In a way though, it gives me hope that normalizing hormone levels might help.  Not sure the best way to do that, other than a healthy diet, exercise, stress reduction and rest.  That much we can strive for.

[Katybarstool]

Well said Lola!

I've probably had Sjogrens for many years, but it wreaked havoc immediately after my hysterectomy when I went into surgical menopause. I started taking hrt 9 months later, and although it helped the meno symptoms, I still have to take Plaquenil and other drugs for the Sjogren's and arthritis.

I'm certain that hormonal changes bring Sjogren's to the fore.

Kathyx

[prunella]

Yes. Yes. And yes.   
The overlap is huge. When I first saw the title of the thread, I thought hmmmm sounds like a competition: which one will win? 

If my memory were better, I'd be able to pinpoint specific triggers, but I recall dry eyes from a point before menopause. And wicked photophobia.  Then the achey stuff kicked in after my first child was born.

I was diagnosed about 12 years later. In the intervening 12 years, I used homeopathy and acupuncture.  Most likely, those treatments clouded the picture for diagnosis.  But I learned a lot about homeopathy that is helpful for relieving Sjs symptoms when they flare up.

And HRT.  I am reluctant to give up the HRT, although I have been taking it for about  7years. I think it helps with dryness and SAD.

[artsyamerican]

I always test negative for Sjogrens...but I know...and my Rheumy knows...it's Sjogrens without a doubt.  I am sero negative everything which is soooooo annoying! Thank goodness I found a Rheumy that can look at all the pieces of the puzzle instead of just one.  It would be nice if it was just perimenopause tho! : )

[gold55]

Prunella, if HRT helps with dryness then why don't the docs prescribe it for all of us post-menopausal women with SJS??  Does it only help while you're going through menopause??  thanks!

[irish]

I wish it could be cut and dried, but it isn't. There is a huge hormone involvement with sjogrens and possibly with other autoimmune diseases. However, the perimenopause is a different animal.

There is the sweating, insomnia, irritability, irregular periods, fatigue, headaches and increase in asthma like symptoms with the perimenopause and I know I have forgotten some things. Oh, there is also the breast swelling that can be really miserable because of the erratic hormone production that occurs.

The doctors admit that the hormones affect the sjogrens but they are still researching the hows, whys and whatever of all this. Like others have stated before me, there is always a denial about the autoimmune illnesses. It would be great if we could find something else to blame all these problems on.

However, whether we have positive tests or not the docs whould be treating our symptoms. If you have been placed on plaquenil you can count yourself lucky as many doctors are too narrow minded to do this. I hope that you continue to feel better. Try to cool your jets and just mellow out and wait and see what the plaquenil does for you. You may be surprised at how much better you feel. Irish

[LisaMarie]

Wonder if Joe is Perimenopausal too?   

I guess I was just hoping.  But when I think back to after I had my children, I had huge issues with fatigue.  My husband at the time would come home and find me literally asleep on the top of a pile of clothing I was trying to fold.  This happened often.  I blamed the softener smell but it was more than that.  Even though I had twins, I had plenty of sleep and should have been able to stay awake long enough to fold a load of laundry.

Dry eyes since I was a teen.  Don't remember a time I didn't have the dry eyes and dry skin.

I am grateful for a Rheumy that is willing to treat the symptoms without a diagnosis.  My dear husband just keeps asking, "if it isn't sjogren's then what is it?"  He had a hard time understanding that the tests are all negative even though he knows the symptoms are there.  I just say, "They know it is an autoimmune issue and so that is what we are treating."

[anita]

If it was just perimenopausal, then the Plaquenil wouldn't gave helped.  Since it apparently did help you, it must be autoimmune based...IMO

Also, AI disease is usually 'set off' by something.  It can be an infection (in my case), or hormones, or trauma, or surgery, etc.  Anything that triggers an immune response, can trigger the AI disease to become active.

[prunella]

gold, I am not sure why docs prescribe as they do.  I think docs are as individual as we all are.

I would imagine that HRT would not be helpful to a person unless their hormones are "out of wack," as in menopause.   It would be like prescribing antibiotics to someone with a viral illness. And it might throw all sorts of things out of balance.

Many physicians offer HRT to perimenopausal patients who have bothersome symptoms, especially hot flashes.
But there is clear evidence there is a correlation between HRT and  breast cancer, so many women and their docs limit the length of time on HRT. 


I recall asking my gyn whether HRT was simply delaying the onset of bothersome (and, for me, incapacitating) symptoms, such as hot flashes, night sweats, etc.  She wasn't sure, but didn't think so. 

Truly, I cannot be sure how HRT is impacting me, unless I discontinue it and compare pre- and post- results. However, a year ago, I tried tapering off, taking the 3mg pill every other day.  Whew!  Hated how I felt. Definitely more "thermostat" problems. And general sense of unwellness.  Could that have been due to other factors? Sure.

I will discuss this next week when I see a different gyn. She prefers HRT cream or patches, so the liver does not have to process the med.   In theory, I agree with her.  But I tried a patch and hated the "itch."  And some days, I would find the cream a huge annoyance* because you have to wait for it to soak in or some such; some days I can barely function.  I do not need another step in my personal maintenance routine.


I think it's all about balance. But balance is not easy to achieve.

* I know that sounds whiney.


beth

[angielyn]

I had mentioned menopause to my Dr. as well. I did have a complete abdominal hyst. almost 9yrs ago. My Dr. did leave one overy in for hormones since I was only 31yrs old when I had it done. He did say that one overy would only last about 7yrs which was when my first flare started. And I could always feel when I was ovulating, I'd get sharp pains. Which I no longer feel every month like I use to. Now I may feel them 2x's a year. She says no...  My symptoms are to bad to be menopause symptoms? I can't take HRT due to breast cancer in my family which was why he kept the one overy in.

Also all my blood work is also neg.

[Katybarstool]

Beth

I only need oestrogen as I had a hysterecetomy. So, I use Oestrogel, which is a gel that is fat soluble. I use it on my inner arms and thighs each day. To me, it is a wonder drug. If it would be suitable for you, I would suggest you give it a try.

Kathyx