Prednisone taper

[stikker]

Lightwarrior keep the faith. Right before I felt better I sank to my absolute worst. I could barely function. I slept all day. I felt miserable. Next day presto! I was better. It was that quick.

[pberggren1]

HUMAN?

Come on now!!! What's that?

[elephant]

Hey Sangye, your 4 feels like 40 mg of prednisone. When you get to 1 mg, will "break dance" and even do the " moon walk"! Yea! Yahoo!
Human is possible. I wasn't human last year. Feeling more human....by next year I will have a cape and fly around and visit you all.

[jola57]

Oh to feel human again, alas not for me, I will never be human again. But then it is the better me version, one that is happy just to be.

[Col 23]

Feeling really bad today. Trying so hard not to be depressed. I think it has really hit me again. Ive had enought. Went for CT and bone density scan today. Dizzy on and off all day. Aches in the body especially legs. Pain in my head been there for 2 weeks on and off. Cant function without diet coke. 3-4 a day at the mo. (Yes, I know its not good for me but I need something to function). Eyes have deteriorated. Memory is shot to pieces. Moody, depressed, anxious. Got to take the mtx tonight and decided I just dont want to so going to take Ativan to relax if I can. I think what set me off is its nearly 4 and 1/2 months since dx, they put me on the scales and 10 kilos over weight. I cant walk long distances with the pain in my back and with this weight on image by Christmas Ill probably be 30 kilos overweight and in a wheelchair or dead of a heart attack. I see my GP on Thursday and my Rheumy next week. I have to have blood test tomorrow also. Im going to get in early to the eye doc this week also. I cant seem to see any bright future. I think you guys are all so brave and courageous and I think Im just weak and pathetic. Im really having a down day. It was great to hear stikker is going so well. Gave me a bit of hope. I never thought of myself as a negative person but today I just am. So I just wrote this and Im going to bed and see if I can sleep. Im never taking pred again. What else is out there.
Sorry guys
Col 23

[elephant]

Sorry Col, and am sad just reading this, but glad you are sharing and you need to get out your feelings and how you feel.
First of all Don't worry about your weight, you are sick and need to heal and get rid of this WG! Take your medicines for your Wegeners. I know they suck, but you need to take them.
Can you call your Rhuemy and tell him that you feel like you are going down hill. I said those same exact words and guess what, one week later I was in the hospital with lung nodules, sore and could hardly walk and then passed out. You sense something and go by your instincts. We are here to help and thanks for sharing.

[Sangye]

Oh Col, don't think you're the only one who feels hopeless! I spend MANY a day in my therapist's office weeping because I feel that way, too. You're neither weak nor pathetic. It takes incredible courage to get up every day and deal with Wegs!

I can tell you this-- pred causes depression. It creates imbalances in your brain hormones that directly cause depression. In 2006 when I was at 5 mg pred (had tapered from original 1,000 mg), one doc asked me to take 20 mg for 2 days to see if a cough I had was Wegs. I took it one day and was nearly suicidal. My therapist in Arizona and the one here in Maryland emphasize how powerful pred is. When I was off it I could look back and see it. Now that I'm tapering, I can see it. But when you're on it, it's hard to see.

I suggest seeing a therapist as you travel the road of Wegs. I sure couldn't do it without that. I've gone once a week for 4 years. Meanwhile, don't let your mind wander into the future. You're not 30 kilos overweight now, you're not dead of a heart attack now. Only look at right now. Take care of yourself.

[jola57]

Col, nothing we say will make a difference if you don't listen. We have all been there and are there. The weight is on every thread out there, it is one of the worst very visible side effects.
As hard as it may be you have to listen and get yourself turned around and let the blue feeling go. We are all here for you and each other. So smile, look up the funny thread, lie down, put your feet up, get a good book, magazine, watch some TV - anything to take your mind away for a little while. Good luck.

[Sangye]

Jolanta, I think that's good advice when it's truly just the blues. But actual depression is very different. When I've been depressed in the past (I never was before Wegs), it was hard to hear someone tell me to just cheer up, count my blessings, look on the bright side, etc.... Depression is a profound state. When one is in it, there is a sense of utter hopelessness and an inability to see that anything can be different. Being a generally cheerful person, I never appreciated it until I experienced it. I have chronic depression since Wegs but have only been in the deep dark pit a couple times--all pred-induced.

[Col 23]

Hi everyone.
Thanks for your kind words. I do see a Psychologist every week but missed out last week. I am also seeing my GP tomorrow. It does help that Im not doing this alone ,Thank you so much I just hit the wall yesterday. I ended up taking my MTX tonight and the the ##@%% (thats name calling for me) Pred. Just reading all the threads just seems like we are on a merry go round and playing snakes and ladders. It stinks. I think its the medication and all the appointments Ive had this week and the weight gain that just hit me. I dont think I have faith in any of my medical team that they know what they are doing. I like my GP as I can relate to him and he is helpful. Im going to have a long chat with him tomorrow. Im so sorry reading all your stories just made me burst in to tears, we all suffer so much. I just cant believe how this has turned our lives up side down. I dont even know who I am anymore. My poor husband I think Im stressing him out, he has been so patient and listened to me going off at least I gave the shop assistances a rest. He has been so wonderful, caring and supportive. Had a awful morning and broke down so I went and did some retail therapy with my husband who had the day off so that cheered me up.I didnt do any dizzy spells today and was able to walk a bit further, (had a lot of head pain for the past week and half),Bank balance suffered but it got me through. I also had heaps of friends call today. What ever it takes....Thanks again for listening to me vent. Im all over the place at the moment. I dont think I want to know the results of my CT, blood test, and Bone density, when I see the doc tomorrow I know he is going to send me off for a head scan and refer to ENT. When do we rest.. I have a very supportive friend network and and supportive husband and lots of family if requried but he problem is I dont always want to vent with them.
Andrew- do you have a Weg Specialist in Australia? Reason Im asking as I may also need one. Also your symptoms sound similiar, I found that swimming when you have the energy or a spa is very helpful also good for the back. I think I mentioned that in previous thread. I too find it hard to walk long distances, I went for a walk on the beach on the weekend and walked too far I had to tell my daughter and cousin not to wait and to go ahead without me. I had to breathe through the pain and keep stopping to make it back to the 4wd. I hate realising my incapabilities.

Just one more thing for everyone's info. I recently went to get some dental work done and the numbing needles didnt work. first time ever. I have been advised that I will need to go under for any work to be done. Has anyone else experienced this. And and and one more thing. Has everyone got a medic alert, my daughter made me get one.

Gone crazy be back soon Col 23