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Thread: Solumedrol vs Prednisone

  1. #11
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    Red face

    My doc didnt tell me that I might be moody. My family found out the hard way. I caught it pretty quickly. I have always been a bit crazy but I was all over the place. Thought I was losing my mind there for a while.

  2. #12
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    I have nothing but scorn for docs who fail to warn patients about the emotional side effects of pred. It's not like it only rarely happens. It's a given with the drug, at any dosage. Doesn't mean everyone will react to the same degree, but they do know it makes everyone more moody and testy at least to some degree. Throw in the enormous emotional upheaval that goes with the dx, possibly being unable to work, pain, etc... and there's potential for all kinds of harm.

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    Red face

    I have been trying to find the specialist and keep getting told to continue with the RA. There are Vas. Surgons locally but no specialist found yet. I cant believe that there isn't anyone in philly?

  4. #14
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    No Wegs specialists in Philly. The two closest Wegs centers for you are Johns Hopkins in Baltimore or Boston University. (Vascular surgeons have nothing to do with vasculitis) I go to JHU.

  5. #15
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    Default Prednisone Nightmare

    I'm afraid -- very afraid.

    My son was on IV pred for 3 days while in the hospital. He finally felt better and was happy and sleeping well, etc. I knew it wouldn't last, but I didn't know how bad things would get.

    He's now been on 60 mgs of pred for less than a week (5-days to be exact). Two nights ago he couldn't sleep, so we gave him a Tylenol PM. It seemed to do the trick.

    Last night, he didn't sleep at all, despite 2 Tylenol PMs (ie: tons of benadryl). He lay on the couch and my husband stayed up with him and they talked all night. My son had a running OCD-like loop going through his head all night that wouldn't stop. It was true OCD behavior. Earlier in the day, he was obsessing about one of his hands being cold and he called Dr. Merkel about it -- which I thought was nuts. I had put a heating pad on the hand and I had rubbed and massaged it and given him gloves, etc. Once I got his mind to go elsewhere, the obsessing about the cold hand went away, as did the cold hand. I'm scared. And we haven't even started the Cytox yet.

    My energy level is starting to wane. It's 11:30am and I'm still in bed. I got up early to give my son his pred and then I went back into bed and read for a bit and I must have fallen back asleep. Just woke up a little while ago.

    If my son is going to have mental health problems on the pred., I'm not sure he can go back to school, even though Dr. Merkel said he can go back to school as soon as he's up to it. My son is not reacting well to the pred at all. And, I know there's no other choice here -- he has to take it. The kid is only 18 years old -- my heart is just breaking -- really breaking.

    The good news is that we're a close family. My daughter came home from college for the weekend, specifically to help out (she wasn't asked -- I'd never ask that. She volunteered and has come home every weekend since her brother got sick). She's going to get him outside for a short walk with the dog in a few and maybe take him over to see my mother -- their grandmother -- a little later this afternoon.

    I guess I need to find my son a therapist. Fast.

    Is there any kind of therapist in particular any of you have found helpful -- a certain specialty or something? I suffer from clinical depression and when I need to (like now), I see someone who's excellent, but a generalist -- he doesn't specialize in anything in particular. Do those of you who see therapists see a generalist or someone who specializes?

    bonnie

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    I've had 2 therapists--one back in Arizona and my current one. My first therapist used "Marriage and Family Therapy" which is not what it sounds like. It means they work with general patterns that began in childhood but continue to manifest in all areas of life. I found it very effective in cutting through major issues very quickly. My new therapist isn't trained in it and my progress has slowed down greatly.

    But beyond a particular method, he really needs someone who has worked with chronic illness. Chronic illness has its own difficulties and challenges. Explain to a potential therapist that Wegener's is not straight forward--neither the disease, nor the treatment, nor the diagnosis, etc.... The drugs (esp pred) and the illness cloud the clinical picture, and it can be very hard to sort it all out. You're experiencing that right now, with the insomnia and OCD-type of behavior.

    Same thing if he needs a psychiatrist. Find one who's worked with people on high-dose pred and chronic illness or they'll be lost. Due to the complexity of this, it may be best to find a psychiatrist at BI or BU, since they are more likely to have such experience.

    BTW-- the effects of pred are cumulative. This is why he's having increasing problems, even though his pred is lower. Some of the pred effects will diminish with the lower dose and some may persist for years. It's very treatable.

    The insomnia is pred. It does decrease as the dose decreases.

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    Red face

    The sleeplessness does go down with the dosage. Thank you pred. It was one of my biggest issuses in the begining. I dont do well without sleep. 5 hours min..I have been taking elavil for years to help me sleep and still do. Me being the mom, I had to have myself together or nothing went right for anyone else for the rest of the day. The cyt. only took days to start working for me. Again I was very lucky to be caught early in. The hole process was scary but I made it through the higher doses with very little support. I am the rock in the family and most likely always will be.
    Finding things to do was manditory. It was almost like nesting. I did or found things I felt I had to do just to get things done and feel productive.

    Has your son started making up some of the work he missed yet? It sounds like he is very determed and would want to catch up? It could keep his mind moving forward toward his goals? Otherwise, anything he likes to do to keep busy. Build things? Read? Busy work, they called it in school.
    I was relieved for you and your family to hear your son made it home. That is a wonderful sign. And reassuring. The high dose stage in the begining can be hard on the hole family. Take help were you can get it. And what ever you do dont be afraid to ask for help either. No one person can do it all.
    Wishing you rest and calm. Kristi

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    The fact that he has been allowed home so soon must be a good sign. I was in hospital for 2 months when first diagnosed, but still eventually made it into remission.

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