Dear All,

Does anyone experience anhidrosis (lack of sweat) amongst your SCLS symptoms?

I stopped sweating after my first severe attack back in October, 2016.

I appreciate your feedback.

Warmly,

Valeria

Hi Valeria,

Wow, it's a bit amazing how similar our symptoms are, Valeria. I too stopped sweating after developing this illness. In fact, the only reason I know what anhydrosis means is because I had to look it up when I first got sick, as I'd never heard of a condition in which lack of sweat is a symptom. I believe that the reason we stop sweating is because we are in fact dehydrated/hypovolemic, even though we're retaining fluids.  As I understand it, when we third space fluids, the fluid from our circulatory system actually leaks out into the interstitial spaces between cells (beneath the skin and around organs). So despite having the edema, we are in fact fluid depleted, and hence the anhydrosis (my mouth gets very dry as well when I am puffy with edema)

Have you been worked up for mastocytosis/mast cell conditions, by any chance, Valeria? It's rare, but not as rare as SCLS. It can present with symptoms similar to anaphylaxis which causes capillaries to dilate and become permeable

The reason I ask is because like you, I too am a "chronic leaker". And when I say chronic, I mean daily for the most part (although I do have periods when the third spacing improves a bit). I also have severe gastric symptoms, rashes, muscle pain, and exhaustion that is so severe I often have to lie down from lack of energy. Lots of inflammation as well (had mild attack of pancreatitis and colon and stomach inflammation as well)

At the moment, I am seeing a hematologist in NJ. She's actually worked with someone who had SCLS so she knows a bit about it.  She's going to give Dr Druey a call for me sometime this month and see if he can offer any addition input on my case, which is rather complicated because I don't fit the textbook profile of SCLS patients. I've been hospitalized many times but have yet to have a full blown attack that landed me in the ICU, so I guess that's why my case is so complicated. Currently, my docs are suspecting that my capillary leak might be due to mast cell issue as I seem to be responding to mast cell stabilizing drugs and antihistamines.

My drug regime at the moment:
Cromolyn oral solution 6 x day (this is a mast cell stabilizing drug, which means that it stabilizes mast cell and prevents them from breaking down and releasing inflammatory molecules like histamine and leukotrines)
Zyrtec 10 mg 2 x day
Singulair 10 mg 1 x day
Benadryl as needed
Turmeric 4 dax day (it's a supplement that's used for generalized inflammation)
Quercitin/Bromelain (another supplement that's reported to block mast cells from releasing inflammatory mediators.....it works similar to cromolyn)

So far, I am experiencing some improvement from this drug cocktail. I haven't tried the Theophyilline yet as my doctors aren't sure if my case is SCLS or not. I've been dealing with this condition for almost a decade now and was misdiagnosed and bounced around from one specialist to another for years before getting any answers. It was a nightmare, quite frankly

At any rate, make sure to keep in touch, if you can. I don't check this site daily, so you might have better chance of reaching me at my email, which I sent you in PM

I live in New Jersey, BTW

Best,
Anthony

After my daughter had her first really severe attack of SCLS , she developed autonomic dysfunction . Autonomic dysfunction is damage to the nervous system , she developed POTs, which is a type of autonomic dysfunction . Most people have no idea that severe illness can damage the nervous system . Please google autonomic dysfunction , anhidrosis is/can be a symptom of autonomic dysfunction . 

Hope this helps,

Kristy 

Hi Kristy!

Thank you so much for your post.

Upon speaking to my IM doc, he says it is a SCLS induced Erythromelalgia.

Small-fiber neuropathy is prevalent in most patients with erythromelalgia hence lack of sweat is mostly present.

Erythromelalgia: https://www.hindawi.com/journals/ijvm/2013/864961/

Receive my warmest regards for Leila and yourself,

Valeria.

I, too, have autonomic dysfunction that is triggered by systemic swelling or exertion. The fatigue is profound and low body temp, respiratory rate, heart rate, blood pressure have varied from troublesome to life-threatening. SCLS-related adrenal damage has contributed to this cycle.

Susan

Dear Susan,

I am sorry to hear that you are having a hard time with finding a proper treatment. 

I also went through months of pure frustration due to the lack of knowledge in the medical world in the US until I came to Barcelona, Spain where I was properly diagnosed by an amazing professor whom I admire the most. His name is Miquel Vilardell. He directs a magazine and has an extended resume in regards case reports publications of Internal medicine.

I am not able to sweat yet, anhidrosis is often a side effect of secondary hyperaldosteronism which I suffer from in result of the most severe attack I had back in October 2016 while living in Miami precisely. I moved back to Barcelona to follow my treatment since health insurance is public and the medicine  costs are reduced to half. 

I presently take Terbutaline, Spironolactone and Bilastine on a daily basis.

We tried to add Theophylline, however, as you may have already read in this forum,, its side effects are stronger than Terbutaline (at least for me) hence this was discarded swiftly.

Spironolactone is given in order to control de hyperaldosteronism, my aldosterone is very high after 10 months from the attack when my adrenal glands failed.

Please feel free to contact me and Know I would be delighted to have a detailed explanation of your experience as well as the doctors who have thankfully given you answers and treatment.

Best regards,

 

Valeria

Valeria,

It appears that we have a great deal in common. I didn't sweat for 20 years prior to beginning the IViGG in January 2015. In addition, I take a low dose of hydrocortisone due to adrenal insufficiany. I'm not on any other meds. I'm on a high salt diet to support my blood pressure. 

I've done well with IViGG in that I haven't had nearly as much swelling. However, I struggle with almost daily episodes of breaking into a sweat and becoming obtunded, not falling asleep but having severely reduced alertness. I can hear but I am not able to move or speak or open my eyes. There is no pain. Sometimes my respiratory rate slows way down. It lasts as little as ten minutes up to two hours. I have fewer episodes if I pace myself and avoid exertion. The hypothesis is that these autonomic episodes are a result of damage from the severe swelling I had prior to starting the IViGG.

I hope that this helps,

Susan