Waiting Again

[OJSRLS]

:unsure: Again I find myself waiting for results a another round of blood test. Sinus problem has gotten better, still nothing to biopsy. Biggest problem right now is that I sweat very easily and very heavy to the point it's embarrising. The Dr. thinks this may be a result of Weg. Has anyone had this problem?

[Dirty Don]

Your doc needs to read up on WG more...yes, sweating profusely in the earlier stages of recovery/dx is well known. Went thru a million T shirts at nite. Was it a problem? Kind of. Will it go away, yes, as your drugs balance you out more. Best to you.

[renidrag]

Same here as DD. Would sweat to beat the band day and night but went away with treatment.
Dale

[Jayne 14]

This is so reassuring : I've always got hot but since starting the meds have got a whole lot worse
God bless fans & air conditioning
And roll on winter !!


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[windchime]

The pred will cause sweating for sure. I started sweating profusely a couple of years ago and haven't stopped yet. Way past menopause so I don't know what's causing it as I didn't start pred until Nov. Annoying as all get out though.

[Lilly]

:unsure: Again I find myself waiting for results a another round of blood test. Sinus problem has gotten better, still nothing to biopsy. Biggest problem right now is that I sweat very easily and very heavy to the point it's embarrising. The Dr. thinks this may be a result of Weg. Has anyone had this problem?

Hi OJSRLS, yes, I had the heavy sweating about 2 weeks solid before Mom brought me to the hospital. I lay on my parents couch and soaked blanket after blanket, yet I was shivering cold at times. So Yes, I do think it could be a result from wegs. But it stopped after I began treatment in the hospital. Are you on prednisone, Cytoxan or other meds for wegs?

[annekat]

Me, too, with the sweating, though mainly at night, in early stages before and shortly after dx. If I have it now, it is likely a sign of a flare, which for me have been mild ones. I don't think pred makes me sweat much, though I can see how it could, and everyone is different.

[LisaT]

I had brutal night sweats in the months before dx and new meds (Imuran and prednisone). DIS-GUS-TING. Cleaning bed sheets every morning and using a mattress protector. So gross. My kids would scream and run away. Now just brief hot flashes where I feel like I'm breaking out in a sweat then it subsides. This could be the beginnings of menopause or the prednisone, or both. :crying:

[Jayne 14]

I certainly don't fancy the flaming menopause on top of this lot !!!
😁


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[Alysia]

Your doc needs to read up on WG more...yes, sweating profusely in the earlier stages of recovery/dx is well known. Went thru a million T shirts at nite. Was it a problem? Kind of. Will it go away, yes, as your drugs balance you out more. Best to you.

welcome back Don :love: :hug1:and with new "suit" of your new avatar :wink1: :thumbup:

:back on topic:

btw, why is that Putin so big ? we need a little Putin,
ok, back on topic:
sweating for me is a red sign: of flaring, and/ or infection and/or cold. I remember changing wet shirts couple of times at night :sad: mostly when I had lung infection.
it is something which deserve more checking.
good luck and update us :hug2:

[godgirl]

Well, this is interesting... I thought it was the pred making me sweat. Had night sweats terribly at first, but that stopped after I started methotrexate. Now I sweat when I do any little bit of activity. Again, thought it was the pred. Maybe its not. Hmmmmm...

[LisaT]

Night sweats are often listed as a symptom in medical info, and it's one of the questions the more thorough docs ask me...

[jvilner]

Prednisone makes me sweat like I never sweat before. Not looking forward to the summer in Israel this year!!

[Alysia]

Prednisone makes me sweat like I never sweat before. Not looking forward to the summer in Israel this year!!

summer is here already :biggrin1:
strange, since I have wg, I do not suffer from the heat. maybe because I became thin from it.... no "envelopes".... :unsure: everyone is complaining about the heat, and me - "isn't it a bit cold today" ? :lol:

[annekat]

I certainly don't fancy the flaming menopause on top of this lot !!!



Sent from my iPad using Tapatalk I'm glad that Wegs reared its ugly head after I was done with menopause. If menopause is still ahead of you, I hope the Wegs will be well enough controlled by then that you won't have to experience the worst of both of them at the same time.

[Jayne 14]

Thanks , I think ive a few years yet !!


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[Beverly]

First, Alysia, you are so funny :lol:! Now on to the subject...I had severe night sweats (worse than menopause) before dx. and medications. My head and hair were wet, pjs, sheets, etc. Had to change all. I could not be out in the heat as I had always been which has not changed. No longer have nite sweats but I get too hot whenever I exert myself, which doesn't take much. The strange thing:confused1: is that the left side of my head at hairline & above will sweat and hair can be wet on that side only, which is the side most affected by nerve pain.
In my case it could be due to pred, dilaudid (pain med) or something else. WG can/may cause nite sweats and meds can/may cause after dx. Since we each are diff and things change so much and sometimes drastically, so many things are possible, but I think the most common causes have been addressed.
Blessings to all :biggrin1:
Beverly

[windchime]

I think the night sweats go with the disease prior to tx and could indicate a flare. I have the same type of sweating as you Beverly although mine isn't contained to one side of my head, it's the whole head. My head can be soaked, dripping wet and the rest of me is dry as a bone. Like you it doesn't take much exertion to get it started. This was happening to me prior to pred and CTX. :ohmy:

Several years ago I went through the night sweats and I would wake up with my head, pillow and shoulders soaked. I even stated sleeping with a towel on my pillow. At some point I decided that it was because I was covered up and hugging a pillow, thus the heat couldn't get out. :unsure: Kinda silly, but when I started sleeping with basically no covers except across my legs the night sweats stopped. still had the head sweats during the day though. I did talk to the PA at my dermatologist office and she was clueless. She gave me a med that the side effect was to stop the sweating. Not so much, but it did give me a really dry mouth like I needed help with that. lol Just wanted to let you know that you aren't alone or crazy. :rolleyes1:There is at least one other person in the world with similar issues. :hug2:

[godgirl]

Interesting, Cindy. I also sweat-only on my head! And it doesn't take much activity to have it start up.

Jen

[windchime]

Interesting, Cindy. I also sweat-only on my head! And it doesn't take much activity to have it start up.

Jen

Maybe it's a girl thing.....:lol:

[Beverly]

Well girls, others may think we are off our rockers:w00t:, but we know we're not (at least as long as we keep encouraging:hug1: each other!)
Thanks Cindy :smile:

[Bing505z]

It's amazing what some Doctors do not tell their patients. If they don't know, then it's time to get another Doctor.


Granulomatosis with Polyangiitis (GPA/Wegener?s) (http://www.vasculitisfoundation.org/education/forms/granulomatosis-with-polyangiitis-gpa-wegeners/)SymptomsThe onset of GPA/Wegener’s may be slow moving with few symptoms, or rapid and severe.
About 90% of patients have symptoms of a ‘cold,’ ‘runny nose’ or sinusitis that fail to respond to the usual therapeutic measures and last considerably longer than normal upper respiratory tract infections.
Not all patients with GPA/Wegener’s experience all symptoms, and the severity of the disease is also different for each patient. If any of the symptoms listed below persist, consider a possible diagnosis of GPA/Wegener’s and arrange to have a complete evaluation, including health history, physical exam, laboratory studies, including a urinalysis and an ANCA test.


arthritic joint pain
blood in urine (which may or may not be indicated by a change in urine color)
cough (with or without the presence of blood)
fever
inflammation of the ear with hearing problems
inflammation of the eye with vision problems
lack of energy
loss of appetite
nasal membrane ulcerations and crusting
night sweats
numbness of limbs
pleuritis (inflammation of the lining of the lung)
rash and/or skin sores
saddle-nose deformity
weakness, fatigue
weight loss

[LisaT]

I have been waking up at night due to the sensation of breaking out in a sweat only on my head... I kid you not. Wtf?!? Maybe we've discovered a lesser-known symptom? Or maybe it's a symptom of menopause or hormonal changes that we all have on common. Weird.

[annekat]

Well, just for the record, I'll have to say that I haven't had any head sweating!

[Beverly]

Maybe it's just "all in our heads" :lol: No one that is not a weggie better say that to or about us!! :glare: Right?
So happy to have found ya'll. Rest peacefully:sleep:

[Jayne 14]

I've not had massive head sweating really !!!
Maybe it's just our crazy heads !!! 😳


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[Alysia]

my sweating is never in my head. it is in my chest mainly.

[annekat]

Mine is on my back! We are all different.

[windchime]

Aaahhh the body part sweats.....:lol:

[marylz]

Funny... I'm considered in remission (medically induced) but i still sweat in the daytime-mostly on my head- like serious sweat-it runs down my back!

[vdub]

Yeap, night sweats..... Wegs? Drugs? Cops at the door? Don't know... Awfully annoying, tho...

[Alysia]

Yeap, night sweats..... Wegs? Drugs? Cops at the door? Don't know... Awfully annoying, tho...

https://scontent-a-fra.xx.fbcdn.net/hphotos-xpf1/t1.0-9/10356227_1502108176667994_3706546990385361180_n.jp g

[chris.wg]

Until this conversation I never thought about it. I have always sweat heavily during activity. But at night I rarely use to. The week before my initial hospital visit that had me diagnosed as a weggie I sweat profusely every hour I slept which sadly was probly 15+ hours a day. After getting on medication it has calmed down a lot. As in I no longer wake up wondering if I went swimming last night. Having said that, I do still sweat more at night then I ever use to. I was just thinking its a sign of getting old lol never tied it to WG.

[vdub]

I don't think its wegs so much as it is the drugs we take. If you look up the side-effects of all our drugs, you'll question why you don't feel worse and understand why they say we'll die from the treatment before dying from the disease....

[Jaha]

I can just think of something stressful or get to excited about things and break out in a sweat on my face and head. It is really embarrassing in a public place and when I put my magic makeup on to look normal, it all runs off and I get big red blotches on my face, it all sucks!

[vdub]

I can just think of something stressful or get to excited about things and break out in a sweat on my face and head.
Same here. I'd never pass a polygraph test...

[windchime]

Same here. I'd never pass a polygraph test...

Hopefully you will never have to take one!! :flapper:

[Jayne 14]

I'd be a sweating mess bright red & guilty looking even if I had done nothing !!!
Almost sweating thinking about it !!!


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[windchime]

Went to Penney's today to do a little shopping. I ended up sweating so bad I looked as it I'd taken a shower. :w00t: It was a little embarrassing to say the least. And I didn't even have anything to wipe my face with.....:rolleyes1:

[godgirl]

Is it bad that I'm kind of glad to hear this from other people??? Because it DOES suck. However, I'll admit, it doesn't suck as much as, you know, dying from wegs. I'll take the meds and deal with it.

For me, night sweats stopped a couple of weeks after I started the mtx.

Jana, the worst for me is a presentation for class. I'm in my 40's and recently went back to school to get my bachelor's degree. We do a lot of presentations and I sweat TERRIBLY when I'm giving one. It is so embarrassing. At work, I've started to say, "Well, I did a bit of walking around the building, so I must be sweating like a pig." Luckily, my coworkers understand and laugh with me.

Jen

[Juliesjewels]

I have not officially been diagnosed with WG yet because two nasal biopsies were negative for granulomatosis & my rheumy won't give me any meds except prednisone until I have a freaking positive biopsy from some place in my body. But my point is I sweat buckets at night to the point where I can't turn over easily bc the sheets stick to me!!! I can feel beads of sweat running down my face & head each night. In the day if I walk more than a block I'm sweating buckets. It's extremely embarrassing!!! It's not the prednisone making me sweat. I was sweating before my first dose of pred. It's this terrible disease making the night sweats!


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[Michael Bell]

Hi Julie, I was also suffering from night sweats before diagnosis, sometimes so bad we had to change the sheets. These stopped when I was put on full medication and it is over two years now since this was a problem. I hope you are sorted soon and can put this behind you.
Mike

[annekat]

I agree it is the disease and not the meds. I had the sweats big time before diagnosis, and they ended with treatment. Now I only get them if the Wegs dog is trying to wake up or I'm in an actual flare and need to increase my meds.

[Ellie]

Hmmm, so these hot flushes might not be menopause...

Not sure how I feel about that to be honest. I'm right in the age range for it (because I had a hysterectomy at 29 the blood supply to my ovaries is reduced so typically menopause occurs a few years earlier).

But...if it IS menopause, when it stops it's over. You don't do menopause more than once...it's a bit like puberty (thank goodness!). If it's GPA and it goes away (with treatment, or just cos)...it might come back.

Think my vote is for menopause...I may be the only woman ever to have said that... :razz:

[windchime]

Bad news is although menopause goes away, the sweating which may or may not be wegs/meds related may stay. I've talked to may women that say they are consistently hot now, post menopause. Obviously this doesn't happen to all women and I pray each of you get through it with a minimum of misery. :ohmy:

[annekat]

Bad news is although menopause goes away, the sweating which may or may not be wegs/meds related may stay. I've talked to may women that say they are consistently hot now, post menopause. Obviously this doesn't happen to all women and I pray each of you get through it with a minimum of misery. :ohmy: Guess I'm lucky, my menopause sweats are gone. I remember them as being worse than the WG night sweats. But everyone is different.

[Ellie]

Bad news is although menopause goes away, the sweating which may or may not be wegs/meds related may stay.

See that's my point...if it is menopause, and it goes away, tis gone...if it's GPA it might come back. So still voting for menopause as my preferred option...

[OJSRLS]

Hey DD just got latest blood work and once again I have a positive ANCA but other than the profuse sweating show no other signs so right now I'm on no Meds. Dr said with nothing to Biopsy does not want to start a round of unpleasant drug regiment. Does anyone know if Wegeners can be systemic? My blood work also showed MCH and MCV were low. I have app. with family MD on Mon. I will be setting an appointment with a Wegener's specialist in Kansas City KS to hopefully find some answers.

[OJSRLS]

I can relate to what you're saying. My Rheumy won't give me Meds with nothing to Biopsy. But I also sweat to the point of embarrassment. I am hoping a Wegs. specialist in Kansas City may be able to help.