Is this as good as it gets?

[csgaippe]

Hello Everyone!
First off, thanks to all of you! Just reading through the posts here have given me a wealth of information!
Secondly, I apologize if any of this sounds like whining.....

Three years ago I had just graduated from college summa cum laude at the age of 44. Score one for the old folks! I worked out for 1 1/2 to 2 hours a day, watched my diet, and was a size 6. I was also one of those people who always seemed to have more energy than most, so if anything needed doing at church, I was your girl.
Then life got very difficult with a rebellious son and stress became almost unbearable. Soon the sinus and allergy problems I had always had escalated. I would be happy if I could stay off antibiotics for more than a month. Last year, my husband was laid off from his job after 18 years and I became the main source of income and health insurance. My boss also left and I was given her job; more money but more responsibility as well.
By Thanksgiving I was on my third course of Leviquin, the ear aches were no better and the joint pain and fatigue were almost unbearable. I also have Raynaud's disease, so the pain and tingling in my feet was worse than ever. I was finally diagnosed in March thanks to my brother, the cardiologist,who called me and ordered me to the Cleveland Clinic.
I started on 60mg of Prednisone for 30 days and am now down to 30mg. I am also on .8ml of Methotrxate injected weekly. Most of the Wegs symptoms are better and my kidneys are no longer inflammed and bleeding. However, the fatigue can be mind numbing! I am also 30 pounds heavier and I a can relate to the Pillsurby DoughBoy.
By te time I get home from work; I now leave by 4; about all I do is sit in the chair, get a shower, and go to bed. My short term memory is not what it once was, to say the least; and I now find myself in the middle of a task at work and can't remember what I was doing. I just don't feel "like myself" anymore.
My question here is, is this the disease or the meds or both? Does anyone else feel like this? Will I ever feel like I did before?

Like I said, I am sorry if this sounds like whining but I just don't know what to expect. Should I even be looking forward to feeling "good" again or just resign myself to life as it is?
Thanks!
Cathie

[Jack]

Whining is allowed on here! :)

If you are still on 30mg of pred, you must still be in the early stages of treatment. Most people manage to level off below 10mg and some are lucky enough to be pred free. I can't say if your current symptoms are Weg related or due to the drugs, but I would remind you that this is likely to be a long journey towards remission and a more normal life, but it can be done. In my own case, it took 5 years before I reached a stable condition, but that was over 20 years ago and things have improved if you are consulting the right specialist. My best years were almost symptom free apart from being a little overweight due to the pred.

Stick with it. You may have to increase your time span expectations, but a fairly normal quality of life is attainable.

[Sangye]

Cathie, you're in the early stages of treatment which means your Wegs is probably still fairly active. It's a serious disease that consumes a great deal of the body's resources. Having to work on top of it is likely to be too much for you. At any rate, your symptoms sound exactly like what most of us experience-- combo of active Wegs and the drugs. Hang in there. Keep asking questions and letting us know what you need. If you just need to vent, that's okay too. :)

[elephant]

Cathie, if your at the Cleveland Clinic then your seeing a Wegeners specialist. Yes, I agree with Jack and Sangye. Working full- time is really hard on your body and need to rest. The more rest you get the better you will feel. We all need to vent!

[Lola]

Welcome, Cathie.

You hardly whined at all! I think you have a lot more inside of you. It's OK to have full-blown mourning.

[Cindy M]

Hi, I can relate to Cathie and feeling tired and exhausted. I too often wonder if its the meds or the disease. Lately though I have been feeling really depressed. Every day I am struggling with tears and anger. I am tired of feeling this way. I am still living with my sister and don't get me wrong she has been great but I can feel the tension. I have been living with her since January and won't be in my new place until the end of June. Some days I feel like yelling at anyone that I come in contact with. Normally I am a very easy going person but I just want to look at someone and ask if they are stupid and take a strip off of them. It's starting to scare me and I can feel the tension getting worse. I am still on 40mg of preds and 150mg of cyclo and waiting to see if I can get some financial assistance to try cellcept. My symptoms have been getting worse again with the pressure and pain in my head and sinus's. My eye has also been acting up again with burning and dryness. Anyways, thanks for listening.

[pberggren1]

No wonder you are stressing out Cindy!! 40mg of Pred can definitely do that to a person. I hope you can move into your new place as soon as possible. I know what it is like to live with other people that don't fully understand you.

I foget, how long have you been on Cytoxan again? When do you see your Rheumy again? I think I would try and get to see your Rheumy and ENT as soon as possible. I hope you can get coverage for the Cellcept. I was fortunate in that way because my income is so low. I made about 12K last year.

[Jack]

It may well be the pred that is making you feel like this, it is well known for it. You must tell your doctor and get one of the established treatments to counter the effects.

[pberggren1]

Good to see you back Jack.

[jola57]

Hello Cathie and welcome. Ah how well I remember the forgetfulnes. For me both short and long memories are gone out the window. Part and parcel of wegs and mostly the meds.
CindyM, high dose of pred may make you irratable to the extreme. All I can say is hang in there, once you lower the dose it will get better.

[elephant]

Cathie, yes it is normal to feel like that. Being on high dose of prednisone for a long time is challenging, hang in there.

[Sangye]

Cathie,those high doses of pred are awful. It will get better as you taper, but tapering is slow business. Some people don't feel much better emotionally for quite some time. I sure didn't. It's a good idea to see a therapist as you navigate through Wegs. Maybe I've mentioned that before to you-- I totally can't keep track! I'm extremely sensitive to pred, and without the skills I've learned in therapy I'd be completely out of control. A therapist stays objective, too. It's hard to see ourselves clearly. And none of us came into Wegs free of prior "buttons." Wegs pushes them all!

[sharon]

Good morning cathiie,
yes, i remember it well, or rather my family would love to forget the high doses of prednisone. I was not easy to live with, like u i am usuallly easy going, but on the high pred, i would take on anyone, especially if i thought they did not respond quick enoough for my liking (sorry to all those shop assistants out there) & my poor husband, i was unreasonable, argued and picked fights, & when i was trying really hard to be be nice and thoughful, it came out sarcastic. But i can happily say, we made it through. Tell your dr what is going on, and try to take it a bit easier, maybe even try some relaxation exercises or music, anything to try to calm the body down so to speak (stay away from energy drinks!!! red bull and the likes - it will not be pretty, there will be carnage for miles!!!) LOL :)
hang in there - u can scream and yell here all you want, and no u are not going crazy
:)

[csgaippe]

Thank you Everyone! I really thought I was just having a nervous breakdown before I was diagnosed. People kept tellling me how I didn't "look sick" and since they had never heard of Wegs, I always took it that no one believed me. Just telling my family I am just too tired to do something sounds like more of a cop out than a reason, but I don't think anyone can understand just how debilitatiing the fatigue is if you haven't experienced it. My husband and I had a heart to heart last weekend and if he can find a job, I will cut back to part-time. He has been looking for 14 months, but Cleveland is not a good place to be right now for jobs. However, the Cleveland Clinic is here, so there is a trade off.
I haven't bitted off any heads yet, but I sure am tempted! Thanks Sharon; it helps knowing I am not the only one! Taking a woman who is beginning to have symptoms of menopause and putting her on steroids is very dangerous! ;-)

One more question, I know they don't know for sure what causese Wegs, but did any of you have a lot of stress before you got sick? I ask because this has been very hard on my mother and she is blaming my son and what he put us through. I have told her that I don't have the time or energy to hold that grudge, but she is frightened of losing a child and trying to make sense of it all. I was just curious if anyone else has had a similiar experience.

Thanks again for all the encouragement and friendship. I am so grateful I found you all!
Cathie

[JanW]

Cathie - I can tell you that I didn't have any particular stress before diagnosis in January. I'm just an average Jane, 2 kids, 12 and 8, loving husband, good family, job I can do at home (I'm a writer). I'm also a very laid back person. I just had bad luck in this case, but extraordinary good luck in another, because, like you, I'm in the same place as the top specialist for my particular issues, saddle nose and subglottis stenosis. So I'd just say to your mom that she can't blame this on her grandson.

[Lola]

...One more question, I know they don't know for sure what causese Wegs, but did any of you have a lot of stress before you got sick? I ask because this has been very hard on my mother and she is blaming my son and what he put us through....
Cathie

Cathie, that rings a bell with me. Yes, I had stress prior to my last major flare, and my mother is blaming my husband for the job change, move, etc. etc. My mother's reaction is twice as hard, no four times as hard, as any of the life stress I've faced.

[sharon]

Cathie,
i had no major stresses before my diagnosis, 35, happily married, with 3 kids (9,11, 14) & i was the fittest and healthiest i had ever been, lost those extra kilo's, all was good in my world, until i developed a sinus infection that would not clear, then it just went down hill from there, that was a little over 3yrs ago now. My mother was and still is in denial about me, but i have a great husband and close friends who are such a God send to me, although at times they all think they are my mother, but i wouldn't have it any other way :)

The long and the short of it, we all cope the best way we can, give your mum some time.
On the other hand you could give her a bigger shock and tell her u r expecting, ha ha ha ;)
i know i am still a little bit evil!!

[Cindy M]

Thanks, I will try and hang in there. I have been on cyclo for over a year now and 40 mg of preds is the lowest dose I have been on since I started in Jan/09.

[pberggren1]

Cyclophosphamide for a year now!!! YIKES!!!!

I would definitely get a Wegs specialist involved.

I see my Rheumy tomorrow in Saskatoon and she has already consulted with Dr. Gary Hoffman at the Cleveland Clinic. I would get your Rheumy to consult with him or another Wegs specialist listed with the VF.

This is your life we are talking about here. You need to be agressive and take action now. You are not getting any better with the big guns and some more experience is needed in your case.

[Jack]

If cyclo is not working after six months, you need to ask questions. It is not a drug that can be tolerated long term without serious risk.

Everyone with Wegeners looks around for what it was in their life that could have caused it and all have their unsupported pet theories. In my own case, I like to think that I picked up a sinus infection that my body could not fight off and the attempt screwed up my immune system. There is no evidence for this whatsoever, but it puts a tick in a box! ;) At the time, I was having a great time testing cars in Italy and staying in a small hotel by the beach. Not a lot of stress there! :)

[elephant]

Cindy, I agree with everyone here....really need to get in contact with a Wegeners specialist. Have your primary doctor or Rhuemy call...call today. Being on high does of prednisone and cyclo over a year can cause long term damage.

[Sangye]

Cindy, holy smokes-- yes, please contact a VF doc.