From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.
For many of us, the cessation of sweating comes without fanfare. One day we realize that we are not sweating anymore and thermoregulation gets added to our vocabulary. Then time passes. One day the sweating returns. There are posts in the Land of Chat announcing “stinky armpits” with zeal and unbridled enthusiasm
On June 4, 2020, the first “Sweat Video” was posted by Rhonda W (Winterset, Iowa) celebrating the return of Jeff’s sweating. If you are a member of the PRP Facebook Support Group, it is worth an instant replay. Go to: Floodgates.
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How common a symptom is the absence of sweating (anhidrosis)
The following thread was initiated by Hailey S on July 5, 2015 as she worried about her inability to sweat and whether it would cause her to overheat. In addition to the 16 participants in this thread, the comments of an additional 17 members of the PRP Facebook community have been added.
Hailey S — Tampa, FL
I have had PRP for about 2 months now. Do a lot of individuals with PRP have the problem of not sweating? I constantly feel like I am going to overheat because I can not sweat. What about temperature? Mine has been dropping at times anywhere from 94.1 to 95.7. Not all the time, most of the time I feel HOT, but do get chills at times. When my temperature is that low I usually feel nauseous and very fatigued which is how I came to take my temperature. Eating something seems to bring the temperature closer to normal. I have no thyroid or diabetes history so I was wandering if others temperature ran low like this at times. I live in Florida and sweating for me was an all day long event. Now I have stopped sweating completely. I don’t miss the sweating of course, just don’t enjoy the feeling like I am going to overheat or pass out unless I get in front of a fan of the air conditioner
Tierney R — Virginia Beach, VA
Absolutely! You need to be careful because you will easily overheat because you don’t sweat anymore. I usually run an under-normal body temperature, but not as low as yours. Are you chilled all the time?
Jeannine E — Clearwater, FL
My temperature runs low, I tend to drink lots of hot coffee to keep warm in the colder months.
Geoff P — Melbourne, Australia
I am not sweating.
Sam D — Sydney, NSW Australia
I found in summer I couldn’t sweat either, but on extra hot days would get the thinnest line of moisture along the line between my top lip and where mustache would otherwise grow.
Holly B — Boerne, TX
My husband who had PRP several years ago, still has not regained his ability to sweat. Living in Texas, he has to be careful and not get overheated. The docs said they have no idea when and if his ability to sweat will come back.
Cindy M — Longwood, FL
PRP for 4.5 years now and no sweating still…. I get very red when outside in the heat after a very short time….especially my face…feel like a furnace inside. Very frustrating as I live in Florida and really have to watch it when I go out.
Annette B — Benton, AR
Meagan W — San Luis Obispo, CA
Sweating has actually increased for me since onset. A year ago I hardly ever sweated but now it’s somewhat of a problem….even sweat while sitting!
Trudy M — Shingletown, CA
I had the most oddest occurrence when I didn’t sweat. My eyes would water real bad and then I would stop doing what I was doing and go in the house and cool off. Don’t know,if that had anything to do with overheating but I used that as my thermostat.
Marianne B — San Diego
Very common in the acute phase. It will eventually go away and when you do sweat you feel like celebrating like its your birthday or something. Actually, Hailey, a low temperature has been a problem for me way before PRP settled in. You might have your thyroid checked out.
Ellen H — Rome GA
Me too (low temperature)
Kathleen T — Dunedin, FL
My PRP parts don’t sweat. I live in Florida like Cindy, so it’s a challenge.
I live in the desert in west Texas and have found I rarely sweat. This has been my whole life though. Then early this year, at 24 I got diagnosed with PRP. But I hate winter because I’m always soooo cold!
No sweat! My face and neck started to perspire after five months, but the rest of me doesn’t. I am a person who sweats through the winter even, and all the time when it’s warm. It is uncomfortable. I am almost enjoying not sweating. Is that bad?
Bill M — Plano, TX
I went months and months without sweating including during the summer in North Texas (Tongues of Fire). Then one day, my right knee got wet. Very wierd. Within a week or two I was gushing on all cylinders!
Burt U — Kenedy, TX
The inability to sweat seems to be one of key indicators of PRP.
Sean L — The Woodlands, TX
I live in southeast Texas and not sweating here is let’s just say, unusual. I love to sweat and not being able to has been a big challenge. This symptom was one of the first that I noticed even before my skin got very involved, I recall I only had areas on my face, arms, and hands being affected and realized one day, hey I am not sweating. I look forward to sweating profusely again one day.
Like Sean L , besides the bumps starting to spread, the ‘no sweating! was when I realized something was really wrong! A co-worker I have taught with for over 20 years come into my classroom, looked around, and said,” your windows are shut and it’s warm outside. You don’t have your fans on, and you are not sweating!” As mentioned in the comments above, I sweat most of the time, even through northern Illinois winters!
MORE FEEDBACK FROM THE ARCHIVES
Greer C — King George County, VA
My husband, Bill, has had PRP for over 4 years….He still is not sweating and the doctor told him that he might never sweat again.
that would mean that he would have to be careful in the heat of summer as his body would not cool itself normally — March 21, 2015
Ginny M — Lexington, SC
I only started sweating now in my 30’s my one son and daughter sweat, my other son does not. We are all different. — March 16, 2015
Missy E — Denton, NC
Biggest problem (when traveling) would be not sweating. Just carry lots of water EVERYWHERE and I suggest a small cooler full of ice water & washcloths….dip cloths in cold water & keep on back of your neck. — April 9, 2015
I was diagnosed w/ PRP in January. I noticed when temperatures are in 90’s I do not sweat, and my hands swell. — April 14, 2015
Annette B — Benton AR
I have had some clearing over the last few months. Am growing hair on my legs again and sweating…never dreamed Id be happy about either of those things before, but I take it as a sign of healing. — April 19, 2015
Mark N — Kalamazoo, MI
Concerned here. My doctor says its okay to exercise at the gym – as much as I feel my body can tolerate. I spent 25 minutes on the elliptical without one drop of sweat. I am well into the clearing stage and the doctor guess Ill be completely over this by the end of May. WILL I EVER SWEAT AGAIN? What should I expect in terms of when these sweat glands come back? Is it gradual? – or just they all of the sudden work again? Is there anyone out there whose sweat glands never recovered? — February 11, 2015
Rebecca L — Las Vegas, NV
Be very careful as you can overheat easily. As you get better sweating will come back. Good luck. — February 14, 2015
Olivier D — Thailand
I swim 45 minutes to one hour .. and bicycle home trainer 30 minutes without sweat , you will feel when your body is overheat… — February 12, 2015
Holly B — Boerne, TX
It has been over 5 years since my husband was in remission, and still no sweat. In the Texas heat, I have to remind him to cool down to not get heat-stroke. — February 12, 2015
Andy W — Reidsville, NC
You will sweat again. After spending a couple of hours in a church while wearing a suit and tie,I kinda miss the no sweating thing. But,as I wasn’t sweating my saliva glands were not working either. I would rather be able to spit than not sweat hahhaha.
— February 11, 2015
Glen M — Glenview, IL
Great that you are beginning to exercise again. My derm told me to do as much as I could tolerate fairly early in my treatment. I did begin to sweat with workouts in a few places long before any clearing. I do stay very hydrated and monitor my body temp after each workout. And consume protein supplements afterwards. So far the sweat glands have recovered in more areas. In fact these are the areas that are beginning to become normal in color and without flaking in the last week. Strange how we all seem to have unique paths in our prp journey to healing. Best to you in your recovery into a more normal life. — February 12, 2015
Burt U — Kenedy, TX
Mark — had the same problem. Took me 5-6 months but sweating came back gradually.Keep working out but be very careful. Monitor blood pressure before and after. Hydrate again and again.
February 24, 2015
Leslie O — Fresno, CA
YES! When I stopped being able to sweat, I was always getting overheated and then chills to follow. I found that I had to be very careful to regulate my body temp. — February 11, 2015
Glen M — Kalamazoo, MI
I found that working out was correlated with gaining the ability to sweat. I drink quite a bit of water in my workouts and am careful with cardio aspects but I needed to regain strength and stamina to initially do even normal tasks again. My derm has encouraged me in this regard. — January 15, 2015
Bronwen S — Auckland, New Zealand
After 8 months of prp I am sweating again, so happy. — February 26, 2015
Misti B — Vacaville, CA
I sweated for the first time today too…
— February 28, 2015
(In response to fellow PRP patient with bad colds) I’ve wondered how badly colds, etc would affect me…bound to get one sometime. And I’ve also wondered..how do you “sweat out a fever” if we can’t sweat? I hope both of you get rid of your colds quickly. —December 6, 2014
Emily V — Cheltenham, England, UK
Max always runs hot. He doesn’t sweat so can’t regulate his own body temperature. He has had convulsions before with overheating. — January 20, 2015
Christine G — Zürich, Switzerland
We have a 5 year old daughter with PRP… After standing up from the car seat after a quick drive in a sun-warmed car Molly called excited:” Mummy, mummy come quickly! Feel my popliteal! There is sweat! I can sweat!”
What a happy day! — June 26 2016