Sweating at odd times day or night?

• By ilene64
• Reply 793923
• March 19, 2010 at 8:16 am
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My hair loss has been due to Cytoxan and even Cellcept. I have begun sweating and I think it is from a drug called Reglan for digestive motility.

• By SandyLu
• Reply 794398
• March 19, 2010 at 11:52 am
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I experience swings in body temperature, too. I've wondered if it could be a scleroderma symptom, my thyroid, menopause -- or even Hep C.

Since this is my first time posting, I'd like to share my history. I apologize ahead of time if this seems to go on a bit...

I was diagnosed with scleroderma last fall. It took just a little over a year for me to get diagnosed.

At first the doctors thought the swelling in my hands was caused by the medication I had taken to treat Hepatitis C -- interferon injections weekly and an antiviral called ribaviran. After 41 weeks of being on the medications, the Hep C returned with a vengeance and that's when the medication side effects got really bad. They kept telling me the swelling would go away and it didn't.

I finally saw a rheumatologist who was convinced it was not RA, but SCL70 was negative. He diagnosed Reynaud's. He also thought I might be experiencing Hepatitis C-related inflammatory arthritis. Then the swelling changed to tightness. In the meantime, I got severely anemic and had to have an in-hospital transfusion followed by 7 weekly iron infusions.

More than three years earlier I had a partial hysterectomy, so this time around, that was obviously not the source of the anemia. In trying to determine the source of my anemia this time, I had upper and lower endoscopies for a fifth and fourth time since my early 40's. I even had a capsule endoscopy that was inconclusive.

My gastroenterologist, also the doc that treated me for Hep C, found gastritis. But neither he nor the doctor that read the pictures, knew about the association between watermelon gastritis and scleroderma. They didn't even think that was the cause of the anemia.

In a strange twist, when I saw the gastro/Hep C doc last August, he looked at my hands, noted the swelling had turned to tightness, saw some red spots on my finger and palm and said, "I think it's CREST. You should find a rheumatologist that specializes in Scleroderma."

Luckily, I found Virginia Steen at Georgetown University Hospital who finally made a lot of the connections for me. She diagnosed me with Systemic Scleroderma but hasn't been able to determine yet if I have limited or diffuse. While she thinks the interferon may have triggered the rapid onset of the disease, she's pretty sure it wasn't the cause.

So, now back to the temperature swings and sweating:

I have autoimmune thyroid disease, and when I first experienced temperature swings before the Hashimoto's was diagnosed, I had terrible sweats -- face and neck, some underarms. Thyroid medication helped stop that.

I was fine for awhile but in the past couple of months, I started getting temperature swings without sweating. This happens during the day and at night. I'm 57 years old, so it could be menopause. When I had the partial hysterectomy 3 1/2 years ago, I was still having periods ever 28 days. But, a recent FSH test indicated I'm most likely in menopause. Still, the temperature swings I experience don't sound like the hot flashes my friends get.

So, that's why I related to Aggie2's posting. And I'm also wondering, has anyone's doc made a connection between scleroderma and temperature swings? I meant to ask Dr. Steen when I saw her last week but forgot to put it on my list of questions. I don't think my experience is because of medications. Due to my experience with interferon, I am trying to steer clear of new medications at this point, although Dr. Steen did increase my Prevacid prescription to 2x's/day.

I am finding this site and so many of your postings helpful. I realize that I am very lucky at this point because my disease is minimal compared to so many of you. My heart goes out to all of my newfound fellow scleros who are having pain and suffering with this baffling disease.

By the way, I'm still on good terms with the first Rheumie -- he did all the right things. He knows Dr. Steen and said she's the sc expert in Washington, DC. If someone had thought to share the results of the upper endoscopy with him, he would have recognized the watermelon gastritis. Seems to me, radiologists and gastroenterologists need to learn about watermelon gastritis/scleroderma connection. There may be more of us out there taking longer to get a diagnosis than they should have to.

Thanks for listening/reading!

Sandy

• By dani0518
• Reply 794479
• March 19, 2010 at 12:37 pm
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i too have been sweating thru the day i get hot jus sitting still then get cold..i jus completed my 3rd cytoxan iv and noticed this after treatments..i asked the doc and he laughed and said yes i am most likely menopausing due to i am 42 and the cytoxan thru me in it...yuccckkkkk!!!! but i new this day would come...also it was mentioned as one of the side effects..but im glad i chose this drug it seems to be helping me a lot.

• By truthseeker
• Reply 794910
• March 19, 2010 at 5:09 pm
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I have been progressively sweating for at least 4 years now. I am 53 and most doc's would say oh hot flashes. It's NOT hot flashes. My menopausal symptoms were not much to write home about.
When I lay down, I too start to sweat. I take NO drugs. My stomach issues are big, was up last night vomiting. Seems my body does not like most foods anymore. Been staying away from sugar, gluten and dairy. I'm sure my body rejects all of those but on what level day to day?
I try to do physical therapy at home and drink lots of water. I still have my night sweats but as long as I am totally out of it 'asleep' I don't notice. But of course most nights I do indeed sweat. WHY? I don't know. I think its because apparently my intestine are involved? Having and upper GI X-ray soon.......

• By Tigerlily184
• Reply 794980
• March 19, 2010 at 6:11 pm
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ha ha ohhh my goodness. Summer just about killed me last year. Doctors told me the prednisone quadrupled any sweating I would have had normally, so medication can definitely have an effect on that. I also was on cytoxin. I am on a much lesser dose of prednisone now, and the sweating has improved a ton. I noticed it would get especially bad if I was out shopping. I would just get in a zone, zoom around, try on clothes and get SO HOT and flushed feeling like I could almost pass out. I am not sure if its all the meds, or the illness itself. I had to wear less make up because I always wound up with a white moustache from where my foundation would sweat off. Ew! Ha ha. If I couldn’t poke fun at myself I would be a seriously sad individual.
I find that sugar free, fat free fudgesicles or popsicles (pick the skinny kind if you have touble with your mouth really help to cool you down in a hot moment. I have a fan at work and to sleep next to at home. But be careful with that too! (my eyes are starting to dry out).

• By Libi
• Reply 795082
• March 19, 2010 at 7:53 pm
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I have night sweats every night 2 to 3 of them on average and probably about 10 "hot flashes" a day with at least a few them really severe and long lasting. I'd always assumed it was menopause brought on by the IV cytoxan I did back in 2006. Here it is 4 years later and they're getting worse, not better. I've tried various hormone therapies and am also on a thyroid medication but still can't get any relief. I did have blood drawn to check my hormones before this last med switch and my hormones were fine.

I never thought it could be anything else other than menopause but now after reading this thread I think I might research this further.

• By vonni
• Reply 795144
• March 19, 2010 at 8:49 pm
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I had the same problem with sweating and feeling hot at night which is from the inflammatory response due to scleroderma. Since being on AP it has significantly decreased. The hair thinning is also more than likely from scleroderma. I had hair thinning and it seems to be stopping now.

• By _Jamie_
• Reply 795237
• March 19, 2010 at 9:53 pm
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WOW i have been wondering the same thing. the only medications im on to treat sd, is methotrexate. ive been getting SOOO hot during the day ( & its snowing here in colorado ) and it also wakes me up in the middle of the night. iam not sure what its from or why it happens either - but i do know it cant be normal, im only 18 about to turn 19, if you find out anything please let me know (:

• By Jasmine1
• Reply 795315
• March 19, 2010 at 10:51 pm
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I have experience the same thing! I get really hot and sweaty every night, some times during the day for no reason. I also tend to get really cold sometimes, my hands and feet seem to catch the worst end of things. I am in the DC area, when it snowed a few weeks ago, my hands and feet got so unbearably hot until I open the door and stuck my bare hands and feet in the snow to cool off. Of course within seconds the pain hit because I am sensitive to cold, well when I am not bursting into flames! I am taking Plaquenil, Pred, Lasix, Lyrica and Celebrex, however I don't think it is the meds that I am on because I have had the temp swing issue for several months.

Hi SandyLu ... I am also a patient of Dr. Virginia Steen at Georgetown Univ. Hospital. I love her, she is GREAT and has helped me feel better, but she still says I have a ways to go. My Gastro dr also missed the dx of Watermelon Stomach/G.A.V.E., after doing my endoscopy, even though I had been hospitalized because of waking up with a lot of dark colored blood in my mouth and throat. It was Dr. Steen that caught it thank god! I am now being monitored via blood test to detect slow bleeds, however sometimes I get seriously nauseous, dizzy and taste blood in my throat, then it is pretty clear that G.A.V.E. is active.

• By SillySally
• Reply 795354
• March 19, 2010 at 11:15 pm
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I have the most terrible sweats all day and all night! I can't stand it! I've been like this for many years now but no-one seems to be able to tell me why? I have really bad stomach and bowel involvement as well as severe pain all over! my hands and fingers swell, tighten and hurt a lot! I'm diagnosed with Raynauds, Fibromyalgia, Anorexia and COPD. I'm still under the 'watch and wait' for Scleroderma. I would go as far as saying the hotness and sweats are the most interfering problems I'm having along with severe fatigue and pain!

• By SandyLu
• Reply 795902 · In reply to 795315 by Jasmine1
• March 20, 2010 at 12:32 pm
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Very interesting to hear from vonni that the inflammatory response to scleroderma is the cause of the temperature swings. That makes perfect sense -- like getting feverish when you're sick.

Hi, back, Jasmine1! Thanks for making the connection. I was on Plaquenil but stopped since it didn't really seem to be helping. Dr. Steen prescribed Lyrica, but after reading the potential side effects I didn't want to take it. Ever since my experience with interferon I am very leery of new medications.

Have you, or any other inspire members, had problems with Lyrica? I hear it can do wonders, but side effects are an issue.

• By Jasmine1
• Reply 795966 · In reply to 795902 by SandyLu
• March 20, 2010 at 1:19 pm
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Hi SandyLu ... I had the same concerns and initially, and asked what options did I have other than Lyrica. Dr Steen said just try it for a little while, and I must admit, it was like a miracle drug, after my body adjusted. Unfortunately I had weight gain problems with Lyrica, however my neuropathy pain was so out of control, I had no choice but to take it!!! That with my joint and muscle pain made me want to fling myself into a wall...lol

I was prescribed 50mg, 2 to 3x's per day. At first I had to take 3 pills, then 2, and then I was able to get by on 1 50mg per day. Then I was prescribed the 25mg pills which I now take 2x's a day. So far this dose seems to be working and not making me eat like a bear, but my Predisone dose has been reduced also now that the Plaquenil in finally kicking in, which greatly helps.

• By SandyLu
• Reply 796949
• March 21, 2010 at 11:13 am
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Hi, Jasmine1!
I'm so glad to hear the Lyrica is helping you.

I feel very lucky that I'm not experiencing neuropathy or severe joint or muscle pain. Due to the HepC I can't take steroids, so when and if I need to take something, I will give Lyrica a try.

About a year ago I started having severe pain in my right shoulder. After several months of physical therapy, a cortisone shot, and myofacial release massage therapy and just the natural course of healing, I'm almost back to normal. When I first saw Dr. Steen she said the shoulder pain was possible due to the scleroderma since it involved connective tissue issues, but she couldn't say for sure. I've been interested to read a number of postings that mention shoulder issues.

And just to get back to the original subject of this thread, it's only 11 AM and I've already had about three temperature swings since getting up a few hours ago.
It sure does get annoying.

• By Kim1957
• Reply 798933 · In reply to 794479 by dani0518
• March 22, 2010 at 6:56 pm
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To Dani,
Glad the cytoxan is working for you, it worked for me also. I did get anemic and had to stop for a while, but then started taking weekly injections of procrit to increase my red blood count. I was on cytoxan in 1999-2000, and my lungs did improve greatly and have been stable until recently. I was on the pill form for 6 months then switched to IV. I was diagnosed with pulmonary hypertension in Dec 2009, which is unrelated to the reason I was on cytoxan. Good luck to you and God Bless.

• By Cubby1
• Reply 798957
• March 22, 2010 at 7:09 pm
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I had those sweats, mostly at night. It was like having menopause all over again.

I was also hot all the time for a few years. Now, I am OK during the day, but at night I still keep our bedroom very cold as I get hot as soon as I fall asleep. My girlfriend who has scleroderma has the same thing. (Drives both our husbands nuts.)

• By dani0518
• Reply 799486 · In reply to 798933 by Kim1957
• March 23, 2010 at 5:11 am
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hi kim thx for ur response but do u remember the cytoxan putting u into menopause i get real hot for a few minutes may sweat a lil then seems like the next 5 minutes im getting cold..i hate this and was not going thru this till i started treaments..i am going to my rehmy 2day and will discuss it wit her and also make another apt wit my ogbyn...i tell u its bad enough dealing with this awful disease and all the other crap that cums wit it...lol..but i mus say i got to stay praid up cause if not i would be a basket case...hope u are doing well and i pray that i get over these hot spells soon...lol

• By ilene64
• Reply 799573
• March 23, 2010 at 8:05 am
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I took oral Cytoxan over a year ago. I am 45 and had regular periods. They suddenly stopped. I had hot flashes and mood swings tears and all, Once I figured out what happened I was okay with it. So, I got completely and suddenly thrown into menapause. I am actually quite happy that it was so quick.

I do still sweat but I thought it was maybe from a drug called Reglan. I am now taking that for GI issues.

• By school
• Reply 799672
• March 23, 2010 at 9:17 am
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HI:iwas detected with scleroderm, low blood sugar & thyroid. after treament of thyroid everthing is normal go have ur thyroid test done,that is TSH,T3,T4 or thyroid profile.i suffered for 5yrs with no doc detecting anything i decided to move frm one doc to other,now living a normal life with Aiternative medicine.visit www:Advanced Aiternativescentre.com get medicine,natural food.iswear u live a normal life

• By Annlee
• Reply 799777
• March 23, 2010 at 10:04 am
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i GO THROUGH THE SAME THING. ON WITH PJ'S /OFF WITH P'J'S ALL THROUGH THE NIGHT. iI FIND THAT THE BETTER QUALITY OF A PILLOW CASE I BUY( 600+ COUNT) THE MORE THE THREAD COUNT THE MORE THE COTTON BREATHES AND MAKES THE PILLOW CASES COOL.ER. I KEEP TURNING MY PILLOW CASE OVER ALL THRU THE NIGHT.I TRIED EVERYTHING, .
AS FOR HAIR LOSS, TRY BIOTIN, I HAVE BEEN TKING IT FOR OVER A YEAR AND IT HAS WORKED. IT TAKES A WHILE TO "KICK IN ", HOWEVER, MY HAIR IS MUCH THICKER. GOOD LUCK..,