Hot Flashes?

[Col 23]

Same wet hair at times. Even my sunglasses fog up if I have them on top of my head. LOL. Think my concoction is same as yours. I'm having cyclophosamine infusions every 3-4 weeks and currently on 25 pred, Bactrim and a few other minors. Cant seem to get into remission even after 3 years. The Pred makes me rage at times and I loose the plot on occasions. But learning to manage that. CALM BLUE OCEAN repeat repeat. LOL
Col 23

[drz]

I'm on Pred and Cyclophosamine and I'm always getting abnormally hot and flushed. My face and neck get very red at times and I abnormally sweat. I cant stand the heat anymore and the air conditioner is always on to the coldest. Docs say its the Meds.
Col 23

I remember when I was recovering in a nursing home and on those meds that there were several nights the staff had to change my bedding and pajamas cause they were drenched. Then some times a hour later I would be chilling and freezing and they would need to bring lots of heated blankets to get me to stop shivering. Fun times--NO but they can be part of the Weg treatment process. I hope you get through them quickly.

[Col 23]

So over it. But battle on, whats the alternative? I really cant believe this is happening to me. I think everyone with Wegs must feel the same.
However sitting in the docs yesterday I felt lucky after observing some very sick and disabled people. Made me pull myself together. I just get so frustrated that Chemo and Steroids are the only meds that work. Up and down. There is nothing else.
Col 23

[annekat]

So over it. But battle on, whats the alternative? I really cant believe this is happening to me. I think everyone with Wegs must feel the same.However sitting in the docs yesterday I felt lucky after observing some very sick and disabled people. Made me pull myself together. I just get so frustrated that Chemo and Steroids are the only meds that work. Up and down. There is nothing else. Col 23

Yeah, I actually enjoy telling people that chemo and steroids are the only meds that work, and that I would die without them. Good shock value.... they can use a little shock once in awhile. And I'm so sure that I am right and they are wrong, when they start telling me I should just quit wheat and dairy or some such nonsense, that I enjoy the feeling of assertiveness in telling them, in a nice way, that they are wrong.We bristle at the expression, "well, at least it's not cancer....", because it shows a lot of ignorance. But I feel lucky when I look at some people I know, friends and neighbors, who have gone through cancer, died from it, or are currently dealing with a cancer diagnosis and the uncertainty of that situation. I am way better off than they are at this point. But I know that could change and there are people with WG/GPA who are in grave danger and suffering a lot more than I am. People have little understanding of the capriciousness of this disease.... heck, even we who have it may not completely get that.

[drz]

Yeah, I actually enjoy telling people that chemo and steroids are the only meds that work, and that I would die without them. Good shock value.... they can use a little shock once in awhile. And I'm so sure that I am right and they are wrong, when they start telling me I should just quit wheat and dairy or some such nonsense, that I enjoy the feeling of assertiveness in telling them, in a nice way, that they are wrong.We bristle at the expression, "well, at least it's not cancer....", because it shows a lot of ignorance. But I feel lucky when I look at some people I know, friends and neighbors, who have gone through cancer, died from it, or are currently dealing with a cancer diagnosis and the uncertainty of that situation. I am way better off than they are at this point. But I know that could change and there are people with WG/GPA who are in grave danger and suffering a lot more than I am. People have little understanding of the capriciousness of this disease.... heck, even we who have it may not completely get that.

I guess I must enjoy doing this a little too cause today I am going for my pentamadine nebulizer treatment. When people ask me what i am doing today I tell them "I got to go suck poison today."

First I inhale for about 5-7 minutes the meds they use for asthma to open up the lungs. Then I inhale the pentamadine mixture for about 20-25 minutes. The pharmacists have to mix it up under a special vented hood. The staff have to wear masks and gowns during the procedure and stay in the room with me. They check my blood pressure, pulse, and breathing several times during the treatment. The tretment is given in a special room with negative ventilation so no fumes escape into the hall way. But the staff tell me not to worry cause it is safe for me and it is not toxic, right? But it is strong enough to kill off a bunch living things in my lungs to prevent PCP (a type of pneumonia that people with suppressed immune systems can get) and the treatment has worked for me so far. I wish I could take Bactrim or Dapasone instead but I can't do either so I will keep "sucking poison" for a long time. The staff are very familiar with this treatment since many people who have had an organ transplant also take the same anti-rejection drugs like azathioprine that we use and also need the same treatment on monthly basis.

When people hear the details of the treatment they often look a little shocked and probably start to realize that maybe I do have some thing more serious than they thought when they said "You look good."

[Col 23]

LOL Wish I could be as brave and assertive. I usually Zip it and lock it and keep it in my pocket. My husband calls me the "big pretender". I always pretend I'm okay. He is my rock so supportive and understanding. For some reason its important to carry on like "I'm normal" . The only issue with this is of course everyone thinks the illness is not serious. So my fault in away that I get all the crazy comments. I tried explaining and educating initially but no one gets it, so I gave up and prefer not to talk about it much anymore even to people close to me. I've even made a decision recently to become more reclusive while I'm doing the Cyclophosamine treatment this year. I don't think I am that socially acceptable when they put me up on high dose steroids and even afraid I might offend as I've tried explaining my obsessive compulsive and hyperactive behavior when I'm on high doses but .... the usual. I try to keep a very calm and stress free environment and have learnt to manage the pred rage to a degree. My very large family just don't get it so I'm having a break from them for a while as much as one can. My children are compassionate but lead very busy lives and I like to help them as much as I can now I'm not working anymore. Hope this doesn't sound too negative, I'm just reflecting and planning for the year and trying to work out how to continue to manage everything. ( It is early morn here as well).
cheers Col 23

[annekat]

Col 23, I think you have a pretty good handle on the situation. You don't need to say more than you are comfortable saying, and OK to avoid having people see the pred rage and other meds issues and thus not having to explain it. If you do need to explain, you can always just say it's a medical issue without going into detail.... trouble is then they'll think it's mental illness, LOL! I just really hope that you are able to lower your pred dose soon and eventually get off of it... something we all hope for, of course, but especially since it is so problematic for you.

[Col 23]

Mmm the mental illness thingy.. Pred seems to make me think Im loosing the plot but I was medically advised that while I'm still aware of symptoms and recognize whats happening Im okay. Whew!!!
cheers Col23

[jola57]

KathyB, same here, diagnosed with hashimotos - hyporthyroidism after first baby 27 years ago, wegs in 2006, started getting hot flashes when I was on cyclo and pred. Now all of a sudden I am so hyper that my eyes are bulging and have non existing TSH levels. Lovely hot flashes make me beet red, pour sweat from my scalp, side of my nose and under my chin. My palms leave foggy prints and I stick to furniture. This has been going on for 5 years, with no end in sight. I'm on mtx now low dose 7.5 and 2mg pred. I noticed that it happens most when I'm emotional. Has anyone dealt with the bulging eyes? How long did it take to go back to normal?
I feel like the hot flashes are here to stay.