New from Chicago

[Piggybutt]

Hello everyone, I was diagnosed with Wegeners 2 was ago and am on 100 mg cytoxan and 40 mg prednisone. I have read what I can on this and yet I don't feel I understand it all yet. A lot to take in. Since I have started the meds my emotions have gone crazy, don't sleep much and almost constant stomach ache. Is this normal and if so does it get better? Finding it hard to concentrate at work. I know everyone's experience is different but any advise would be appreciated.

[Pete]

Hi Piggy,

Welcome to the club. Your side effects are not unusual. The mood swings and sleeplessness are common with prednisone. The bellyache may be from cytoxan. You should take it with plenty of water. Also keep well hydrated so you can urinate more frequently and thereby eliminate cytoxan's metabolates from your body. Cytoxan is hard on the bladder.

Don't be afraid to ask questions or vent on here. We're all experiencing this damned disease together.

[Piggybutt]

Thanks Pete. Feels great to be able to talk to people going through my same situation.

[mrtmeo]

Agree with Pete.
Drink plenty of water to get rid of the cytoxan.
Also, taking prednisone right when u get up in the morning, can help with sleeplessness.
Prednisone can cause the sleeplessness especially at the higher doses.

[kaysee]

Hi Piggy and welcome to the forum,
You have come to the right place. I am still new to this disease myself but have had many questions answered, some which my doctors could not respond to. There are many here who have experienced a lot of different medications and side effects and are willing to respond to your questions. Welcome to the forum and sleepless nights. That's why I'm writing this at 1 am - can't sleep.

Karen

[Donna-from-Philly]

I was on cytoxin; drink lots of water after you take it and visit the bathroom often in the hours you take it. 40 mg of pred is difficult. Get up and walk around as much as possible at work. My "BFF" is a physical therapist and she had me stretch for a few minutes every time I visited the bathroom. Head rolls, shoulder shrugs, and stretch the arms across the body and upper body twists and deep breathing the whole time. Your body will slowly adjust a little bit to the prednisone. It was too much for me and the doctor gave me a prescription of Valium. I also had a note from the doctor regarding my need for more frequent breaks. My company was great. HR had me labeled disabled, came up with a accommodation plan. It made me nervous but my other "BFF" is a lawyer and she said it would protect me under the ADA laws.
Don't beat yourself up over not "handling" everything as well as you used to. Best of luck to you.

[annekat]

Welcome, Piggy! I didn't get when you were diagnosed because of a typo. 2 weeks ago, 2 months? It sounds like it wasn't long ago, though, and it does take a few weeks to get used to Cytoxan. I was on the same amount, and I did split the dose in two parts, although I've read since then that it's better to take it all at once. But nevertheless, it worked well for me to clear up my lung involvement which was bordering on severe. I did drink lots of water every day because of the bladder issues. I was also on the same amount of prednisone, after starting with 60mg for a couple of weeks and then lowering it. It never affected my sleep as much as some people, but everyone is different. I did experience some "pred rage", getting overly upset or angry over little things, at unexpected times, and the desire to eat a lot, which is common. After close to a year on Cytoxan, which was too long, really, I was switched to methotrexate. Things were a lot better by then, the lung issues were gone, and I was left with the sinus and ear issues which persist to some degree, due to permanent damage caused by the disease. I'm now at between 10 and 15mg. pred, trying to taper solidly to 10mg., but it can be difficult, especially if one has stress in one's iife. Every case is different, and reading as much as you can on here about different people's cases will help you a lot in understanding the disease.

I might add that if you are already back at work, you are doing well. I could do nothing but sleep, eat, and sit at my computer browsing the forum for the first couple months or so. I can understand it being hard to concentrate. I think some time off work would be justified, but I don't know your particular case, and if you are managing OK, that is OK. Do keep in mind that it WILL get better, not only the drug side effects, but your symptoms and the disease in general as it is slowed down and suppressed by the meds. Keep us posted! I'm glad you found us. This forum has been a lifesaver for me.

[BookNut]

Hello everyone, I was diagnosed with Wegeners 2 was ago and am on 100 mg cytoxan and 40 mg prednisone. I have read what I can on this and yet I don't feel I understand it all yet. A lot to take in. Since I have started the meds my emotions have gone crazy, don't sleep much and almost constant stomach ache. Is this normal and if so does it get better? Finding it hard to concentrate at work. I know everyone's experience is different but any advise would be appreciated.

I was misdiagnosed with Wg, found this forum, and then just never went away. I have similar problems so find much help here and contribute when I can. So...welcome to a great group!

I AM extremely familiar with prednisone. I can second the advice to take the pred as early in the day as possible. I also find that a melatonin is helpful getting me to sleep. It is an OTC supplement. Ask your doctor first, but I don't think it has negative interactions with your other meds. I also have found benadryl to be helpful, though it gives me weird dreams.

The other advice I have is to try out ASMR videos on YouTube. They will help if you have that particular sense. Definition: "Autonomous sensory meridian response (ASMR) is a neologism for a perceptual phenomenon characterized as a distinct, pleasurable tingling sensation in the head, scalp, back, or peripheral regions of the body in response to visual, auditory, tactile, olfactory, or cognitive stimuli. The nature and classification of the ASMR phenomenon is controversial,[1] with a considerable cult following and strong anecdotal evidence to support the phenomenon but little or no scientific explanation or verified data.[2]"

I know. It sounds very far out. Those who have this sense have always taken it for granted. I have always found certain sounds to be mesmerizing...soft voices and brushing sounds in particular. I thought everyone had the same reactions to certain sounds and was surprised that many do not. Anyway...I discovered these ASMR videos on YouTube, and have found many that relax me so much that I fall asleep listening. I actually discovered them when searching natural ways to combat insomnia. The videos that work for me involve hair brushing and shoulder massages. I know this may sound completely nuts, but take a look and try out different videos. If it works for you, it will be a god-send at calming the prednisone whirling brain syndrome!

Good luck!

[Mas78]

Hi Piggybutt, Welcome to the forum.
As others have stated drink plenty of water and urinate frequently with Cytoxan. My doctor told me to take it when I first woke up, (I worked over night shift at the time.) The Cytoxan gave me horrible stomach aches also. it wasn't uncommon for me to get home from work feeling so sick I would vomit a few days per week, then I would feel better to go to sleep. I hope yours isn't that bad. But if it is, there is something they can give you to help with the icky feeling the Cytoxan can give you. I never took it as I didn't want any more pills, looking back I should have probley at least tried it. The prednisone is a drug that makes us feel so much better when we are taking it, but the inability to sleep is a side effect for some.
I hope you are responding well to your treatment and they will be able to taper off the medicine and the side effects will become less and less.
Don't be bashful to ask questions on here, the members here are very helpful and we can all relate to what you are going through.

[mishb]

Hi Piggybutt and welcome to the forum.

Some very knowledgeable people in here that can help you with just about any question you may have.......some probably not even WG related.

As you can see, I live in Melbourne Australia, which makes this forum so readily available to anyone, any time of the day 24/7

The only thing that I would really say is - Don't believe everything that you read
Stick around here and ask, ask and ask again.

I hope you feel better soon