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 :ohmy:
Stick around here and ask, ask and ask again.

I hope you feel better soon

[Piggybutt]

Thanks to everyone, didn't realize how much it would mean to me to be able to talk to someone going through the same thing. Already learning more on here about it all. It has only been since Oct 16th since I was diagnosed, same day of my Kidney biopsy. I think I have a lot of questions for my Dr now that I am more informed and not so afraid of the answers.
Work is stressful and I was trying to power through this just like I had been with the pain before the diagnoses. Clearly I am not handling the meds very well so maybe time to take some time off from work and just take care of myself.

One question for everyone, how are your spouces coupling. I have only been married for 15 months and my husband seems to get overwhelmed when I try to talk to him about. I did tell him to come on here to read up and hoping he still does. I know this is as much a shock to him as me and maybe he just needs to accept it in his own time.

[Pete]

Hi Piggy,

My wife (of 44 years) has been very helpful as we got the disease under control. She accompanied me to doctors appointments when I was really sick. We developed a list of questions before we saw the doc (still do), and she took notes on answers and follow ups. She checks in on this forum occasionally and that helps her stay informed.

This disease can be pretty scary when you're flaring and having symptoms. I encourage you to have your hubby go with you on doctor visits so he can ask questions, express his concerns, and learn more about how he can help you cope. With proper treatment, you can have a nearly normal life.

[rebekah]

Welcome to the forum! I'm sorry you're dealing with all of this, but prednisone certainly has some crazy side effects, including insomnia. I'm on 50mg and can barely sleep. My doctor gave me Ambien and that helps, but I have heard melatonin helps too (you can easily get it at CVS or another drugstore). Talk to your doctor before adding any new medications to the mix though. The insomnia does get better as you taper pred. Like Pete said, cytoxan is hard on the body so stay hydrated. I was on cytoxan for 6 months when I was diagnosed and it made me super nauseous. I was given zofran to help, and also went through packs of gum and lots of apples (those 2 things always helped me with nausea).

I don't have any input on how my spouse copes with this... I'm only 23 and don't have one. But Pete has some great suggestions. I'm sorry you both are going through this when you should be enjoying your life together.

There is certainly a ton of information here. If you ever have questions, feel free to ask. There are so many wonderful people on here and always someone on to answer questions. It's important to have a great support team when dealing with wegs, and this site has been a huge help for me. I don't know where I would be without everyone here. I know you just started treatment, but I hope you feel better soon! :)

[annekat]

I'm not married, but am sure that not every spouse reacts in exactly the same way. It has not been very long, and I can well imagine the difficulty your husband has processing this information. I remember how I felt when first diagnosed, sort of a mixture of shock and wanting to believe it was something I could recover from over time, though I knew there wasn't a cure. Reading the forum was such a great help, seeing that a great many people go on to do the same physical activities and continue in the careers they had before dx. There is such variety in people's cases, the symptoms and severity, and the more different experiences you read, the more you will understand what you are dealing with. Some spouses have gotten involved in reading and posting on the forum, but I wouldn't say it is a large number. I think it is just a matter of time before your husband will see your improvement and find ways in which he can help and be supportive. I don't blame him for feeling overwhelmed this early on. I'll bet that will change and he'll become your biggest advocate.

[Donna-from-Philly]

I was 42 when diagnosed in 2011. My husband of 18 years had left me in 2007. I was raising two teenagers and in 2008 I met a great guy through work. Anthony was in the process of selling his house and moving in when I got sick(2011). For a long time he blamed himself for my illness. He has stayed with me and our love is incredibly deep. It helps for Anthony to be involved with the doctors. I think it helps him and my parents if I have him tell my parents about updates. They tend to be each other's support group. I also use a site called caring bridge to keep everyone updated on my condition. Then every conversation with friends and family isn't about your health. Your husband can choose to read it or not. Anthony doesn't. Just keep communicating yet be sensitive to the fact that sometimes they aren't ready to hear everything. My life is really good. We have found a balance. Like....We get hotels on the beach wherever we go so I can rest and he can enjoy himself without feeling like he is leaving me behind. Good luck. Although I am in Philly now I was from Iowa and moved to Mt. Prospect and Gurnee after college. So I have a soft spot for Chicago!!!
Donna

[MikeG-2012]

Clearly I am not handling the meds very well so maybe time to take some time off from work and just take care of myself.

I've learned over the past 2 years that you have to listen to your body. It will tell you when you are tired, when you need a day to recover, etc. LISTEN to it and don't over do it. You'll pay double when you blow it and overwork, etc.


One question for everyone, how are your spouses coupling. I have only been married for 15 months and my husband seems to get overwhelmed when I try to talk to him about. I did tell him to come on here to read up and hoping he still does. I know this is as much a shock to him as me and maybe he just needs to accept it in his own time.

I have an amazing woman walking with me on every step of my Wegs journey. Being newly married must be hard. Communication is probably the most important part of your relationship. But, be careful not to over communicate what you are going through. I have a friend that has another long-term illness, and his spouse really can only handle the condensed version of how he's feeling, etc. Unfortunately, you are both just going to have to work through this disease together, because unfortunately, it is here to stay now. I sincerely hope you can make it through the first part of the process, so the next phase will be easier.

Welcome to the best group of folks on the internet!!! (-8

Oh, almost forgot to say. I grew up really close to your neighborhood! I lived in Minooka for my first 19 years! Used to go shopping in Crest Hill a couple times a week. I dated a girl who was a Wendy's manager in Crest Hill. Oh the memories...

[Alias]

That must be tough going for you and for your husband so early in your marriage. Receiving and digesting news of a serious and complex medical problem is very difficult. My wife and I have "practice", since she is a breast cancer survivor. When she was diagnosed we had to deal with a lot of information and decisions, and adjustments to our life together. I took on the role of "scribe" at appointments, taking notes and making sure all our questions were answered. Years later, she is now doing the same for me and continues to be supportive and sensitive to the changes this illness is causing for us. If your husband can manage it, it might be helpful for him to attend some appointments in order to get a better handle on what is going on with you. But, as you say, it is also a matter of allowing time for the diagnosis and its ramifications to sink in. This is still very new to you so it will be a while before the dust settles.

I don't think you can "power through" any aspect of this illness. Fatigue and stress can only make things worse; as others have said it's important to listen to your body and understand what your limits are. With time and good medical care, things will get better.

[Piggybutt]

Thanks for the great advice everyone. Last week was a long, hard week at work and I decided to go on short term disability. Time to take care of myself.
My husband has been wonderful and very supportive, he just doesn't like to talk about it much.
I am learning to give him info in small doses and he seems to handle that well. Great idea to bring him on my next appt if he can get out of work.

Still not sleeping well and did get a scrip for sleeping pill but part of me is worried about having the cytoxan sitting in my bladder all night. So do i get a good nights sleep and do possible damage to my bladder or not sleep thru the night. Uuummmm.

[annekat]

I think the Cytoxan sitting in the bladder overnight is a valid concern. If you take it in the AM and drink plenty of water throughout the day, and then taper off on the liquids toward bedtime, I suppose that might be OK. But I'd make doubly sure to drink copious amounts of water during the day and as soon as you get up. It's hard for me to answer because I always get up in the night to pee and usually drink some tea before bed. I can understand your not wanting to interfere with the prescription sleeping pill, and most of all, wanting to sleep! I use melatonin for sleep; it knocks me out pretty well but I wake up a few hours later, and that's when I hit the bathroom and go back to bed. I could take another melatonin but don't. I don't know how it would be with a prescription sleeping pill, never having used them... Good luck figuring it out. I did take CTX for quite awhile so can relate to your concerns.

[Mas78]

I think it's wise you decided to use your short term disability. I had to be off work for almost 3 months to get better and to make it to all of my doctor appointments.
As for the cytoxan sitting in your bladder all night, I remember my doctor telling me to take it first thing when I would wake up, drink plenty of fluid and rest. I would sleep 8+ hours back then. So I would ask your doctor their advise but I bet they will tell you to rest as you do need it.

[drz]

My impression is that most spouses and family members are very helpful and supportive and their involvement is important in helping a Weggie maintain their optimal health. Some spouses and family have trouble understanding and accepting the changes in life style that Wegs or any serious chronic illness brings to a person and the family and so they may withdraw or become over whelmed by it all and offer a lot non helpful advice. A few spouses bail because the change is more than they can handle. But most relationships seem to survive and thrive and become stronger as they learn together to cope with the chronic illness and changes in their life style. Some people have no family or close friends to help them with their illness and have to rely mainly on paid help or some assisted living situation for help with their care.

The above posts have a lot of good advice on how to help your spouse get involved at a level they can handle. Best wishes for happier and healthier living.

[Donna-from-Philly]

My doctor said it was very important to try to drink a lot of water in the six to eight hours after taking the cytoxin. And to never hold your bladder during that time.
I take a sleeping pill every now and then. The doctors I work with said to take a sleep aid for three nights in a row and then stop and see if your natural rhythm takes over.

[miracleshappen08]

I hate pred, but yet it has saved my life!! The high does will make everything so agitating!! When I'm in a high does, I cannot have the fan on in the bathroom. It's to annoying! And yet I have two children playing all day. 😊
My stomach hurts almost all the time and I'm only on MTX. I'm taking zofran to help. I don't know if you can take that with CTX. Ask the doctor, oh and make sure you are on something to protect your stomach from the pred!
I have been married for 5 years. I was sick before I met my husband. But I told him right up front what my life was like. That I was sick and that my medical bills or way out of this world. Since we have been married.. I have never been not sick and I have been in 5 comas, and had 8 surgeries. And he has been there for all but one surgery. He has had to carry my to the bathroom and help me sit on the toilet. After my lung surgery last year, I could not move walk. I could barely move, I also had a minor stroke during the surgery. So he had to do a lot for me!!! He is the only one that will ever understand how bad it was. Other than the doctors. I'm sorry for those who have had there husbands or wives leave them. It's hard to live with this disease

[chris.wg]

Hi Piggybutt welcome to the forum. Your symptoms are common. I got off my Cytoxan the past June I think it was though I never got down to 100 the lowest I ever made it was 125 and started at 200. So yeah the best advice I can give I have already seen echoed here several times. WATER WATER WATER throughout my 8 hour shift at work I was drinking 2-3 liters which would be the 8 hours following when I took the Cytoxan. I never stopped drinking thru the day but after that period it varied.