Sjorgrens I appear to be allergic to just about everything

Posted , 10 users are following.

I have primary Sjorgrens and been on hydroxychloroquine 400mg daily since Feb 2015, and now all of my muscles in my shoulders and legs have become really painful.  I tried taking pilocarpin and this caused my right armpit to swell as well.  Seems like everything I take just creates another problem.  I have now been out and purchased some sea buckthorn from hb so I hope this is not another waste of time.  Getting quite depressed with trying everything and nothing working.  Most night I don,t sleep due to all the symptoms.

Does anyone else have all these allergies? I am now down to one perfume , and that is channel no. 5, I have the same issues with soap, shampoo, conditions and laundry soap, getting a bit sad now lol, rant over.

Mandy x

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  • Posted

    Hi all, well it seems I may have figured out why I too seem to be allergic to just about everything: High estrogen levels.

    An endocrinologist sent me for some hormonal blood tests and my Estradiol (E2) levels have skyrocketed.

    From what I've read this may cause a worsening of allergic reactions as well as tissue swelling (which I've also complained of in this forum).

    Has anyone else checked out this hormonal direction?

     

    • Posted

      Hi Shira,

      Yes, I too have been working on balancing my hormones.  

      This is quite common for people who have an autoimmune disease.  I wish I would have thought to mention it earlier.  I have been working to achieve the right balance for the last two years just through diet and hormonal supplements from my doctor.  It has helped a great deal-- and I have become more sensitive when they start to get out of balance.

      When my hormones are mostly balanced and I'm eating my good diet, I feel pretty good and I noticed by dry mouth and dry eyes are much alleviated almost to the point that I don't notice anymore.  I go in to have my blood tested about every 3 months because my doctor wants to check my levels for: Iron, Ferritin, B12, folate, methylmalonic acid, sedimentation rate, DHEA, TSH, Free T4, Free T3, Vitamin D level, etc.  It all depends what is low or high.  I know this is random information, but maybe someone will benefit by reading it.  I'm doing much better these days, but still losing my hair sporadically.  My suspicion is that my on and off hair loss is related to the hormonal imbalance.  Only time will tell.  Wish I had the answer for us all.

    • Posted

      Thanks for the info Morelia, that's amazing that the balancing actually helps with the eye/mouth dryness as well as with the sensitivities!

      Is anything specific always out of balance with you or is it something else each time? Last year looked like all many of my hormones were out of whack, but now it's only my Estradiol which is so ridiculously high nobody can make sense of it.

      Have you noticed any beneficial changes in AI antibody blood work or inflammation markers when your hormones are balanced? (That would be really interesting!)

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