Methylprednisolone and Prednisone Withdrawal ?

[Realpro325]

Greetings all ,
I have stopped taking steroids for the first time in two years after several reductions and finally a taper down to zero.
My symptoms on a regular basis are a very long list and my WG's is very active as I can't seem to get into full remission
but as of thanksgiving weekend I have stopped taking steroids due to severe edema in my legs and feet(yes they checked my heart).
My question is other than all my standard symptoms going haywire I am experiencing a very down mood and sleepless nights along with a feeling of apprehension at night or when it is dark outside. I live alone and my family is one of those who don't really think that I am sick. I told them that human connections and even a phone call would help as this seems to reduce the symptoms. Has anyone else experienced this?

Thanks again friends,
James
PS. My symptoms and conditions are listed in a post titled "Vertigo Anyone"

[Alysia]

Not sure, but I think that the symptoms you describe are more related to anxiety and tension. When I reduce pred I get crazy migrains and body pains. Read this one for example http://www.wegeners-granulomatosis.com/forum/medication/3440-prednisone-dosage-lowered-two-days-ago-feels-like-i-got-hit-truck-morning-3.html http://www.wegeners-granulomatosis.com/forum/medication/3889-prednisone-withdrawal.html
Anyway, it sounds like you need a decent treatment, your wg is still active ???

[Green Grass & High Tides]

Down mood and insomnia and increased anxiety are common when Im decreasing pred. Exercise, juicing and b, d and cal-mag vitamins seem to help. Exercise helps 75% better than the others. It gets the adrenals going and improves systemic issues.

There is a scale used to determine level of GPA severity. It used to be that if the disease is untreated at the severe level it was unilaterally fatal. My disease alwayd has some "rebounding" or increase after a pred drop but I usually recover after 1-3 weeks with a healthy regimen.
1. Nutrition
2. Raise Anabolism
3. Restorative Sleep
4. Reduce int /ext Stressors

Stressors are the number one trigger of autoimmune disorders. Reducing pred is a major stressor. So is living alone with a fatal disease, it increased my anxiety when I did it.

There are also counteractive meds that reduce the pred issues you listed. I would talk to a few doctors about it. Maybe a therapist if you are alone. Getting out for regular walks can result in friendships sometimes too.

I'm at 5 mg as of today! So excited! But my lungs are inflamed this am. Ill do the above regimen and take it as it comes.

Congratulations on your pred discontinuation! You are not alone in this way of life. Don't get discouraged. There are things you can do.

Best wishes
Tom

Sent from my SM-G925V using Tapatalk

[MaxD]

James, Are your docs certain that you have active disease, or could the issues be a side effect of tapering down on the prednisone? It took me a good 6 months after stopping prednisone to feel close to normal. As Tom mentions, exercise - not matter how mild at first - will certainly help, as will getting out more and consulting with a therapist if that is an option. You're not alone in this fight, you've reached out on the forum and that's a big start. Having the forum to share Wegs related thoughts and worries has helped me compartmentalize so I don't have to share my Wegs worries with people who can't/won't understand. Now get thee to a library or coffee shop! All the best to you!

[Birdie]

I live alone and my family is one of those who don't really think that I am sick.

I've got two suggestions for you James,

First suggestion: Have your family read this The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). It's not a complete soulution to getting people to understand, but it's a brilliant beginning. You'll start getting help & support from anyone who cares, once they begin to grasp the seriousness of your situation. The rest can go to...

Second suggestion: Stop looking so much like Andrew, it's confusing even with the sunglasses.

Methylprednisolone did me wrong. It put me down when I was already at a very fatigued condition and I haven't been able to recover in the last nine months. Were you on it daily? For how long? If that's what caused the edema then perhaps you'd tolerate straight prednisone. Pred has nasty side effects but for me it's nothing like methylprednisolone. To get me to take that again they'll have to tell me I'll die soon without it.


Gary
PS. I'm a wise ass. Born that way, it comes naturally.

[debra]

James,hi! I can't help with the pred advice as I'm not on it but do know if has strong affects on moods ect. What I can Realy relate to,is the lack of family support,though I may have u beat here,as I don't even get a phone call... Except for one brother and they live just under an hour away. So alone with this also,and ya it sucks! But I've found things that help. This group is one,and I would never want to be without it. God being my first real help.... If u ever need or want to vent to someone who gets it,I am here.... Although I'm a little nuts,I do mean well. Being nuts helps me to cope with this crazy thing,called the weg dog. I hate him!!!!! I am here,and we r family here so come on over to the crazy woman's thread,that the beautiful Alysia helped start for me. I bet she's sorry now! Ha ha....... Deb.

[Realpro325]

Thanks Alysia,
You are right about the anxiety as I have been so inactive and a semi hermit for about two years. I am on chemo treatment for active Wg's(Humira and MTX) but I think this steroid withdrawal will last a few more days maybe weeks from what I have read. I should have been more clear in my post as I was also asking about the Edema in the feet ankles and lower legs due to steroids. Thanks again for your reply, hope you are well.

[Realpro325]

Thank you Tom,
Sounds like you have done your homework .I guess we all go searching for info as we need it daily.
Be blessed,
James

[Realpro325]

I appreciate the compliment Gary , I guess?
LOL !

Take care
James

[Birdie]

I appreciate the compliment Gary , I guess?

Compliment? I guess, if you think Andrew is a good lookin guy...

2288 2289

Andrew's hair is shorter, but you may have a long lost brother.

Gary
Keep smiling, no worries man...

[Realpro325]

Thank you Deb,
I am always grateful for anyone I can call a friend.
God bless,
James

[Realpro325]

Hey max,
Thanks for the reply. I have been confirmed as active with ANCA blood test (C,P,PR3) and several other condition issues are very active like joint swelling severe pain and so on. I did some more reading of medical reports and found that there are many issues for this type of disease coupled with a taper off of steroids. Thanks for the advice keep hanging in there. oh yes I forgot that I am starting to do some more physical movement and stationary exercises as my vertigo prevents me from running or even walking around the block.

Best regards,
James