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Sangye
10-15-2009, 11:36 AM
In today's "Holy Smokes" discovery, I learned that solumedrol (the IV form of pred) is stronger than oral pred. I found this (http://www.globalrph.com/steroid.cgi) nifty conversion calculator, where you can put in the solumedrol dose (methylprednisolone) and get the corresponding prednisone dose.

Be prepared to be shocked unless you already knew this. All this time I thought I had started Wegs treatment in 2006 on 1,000 mg IV pred. (I thought calling it solumedrol was just a technicality.) Turns out that's equivalent to 1,250 mg pred. A whopping 1/4 higher than I thought. :eek::eek:

And the 125 mg solumedrol I've been getting during rituxan IVs is actually 156 mg!!

The reason why this blows my mind so much is that I can barely tolerate 4 mg these days. No wonder I've been feeling so lousy. Sheesh. :cool:

jola57
10-15-2009, 03:58 PM
And I thought I had it bad for 6 months on 60mg

RCOSSIO
10-23-2009, 01:25 PM
1250 mg of Pred.....HOLY SMOKES!!!!!!

At that amount I would probaly weigh 350 lbs...and I thought 10mg was a lot.

Okay Sangye..you "is" officially the pred queen of this forum...hungry for Chocolate????? :eek:

Sangye
10-23-2009, 01:46 PM
Surviving those high doses darn well oughta earn me a crown!! (or at least a nice little hat) The pred plus the excessive toxicity of ctx for those first 7-8 months are the reason I've never gotten back on my feet. I can see it now, having been on ctx for 4 months and at much lower doses of pred. I have better perspective.

The IV solumedrol each week is kicking my butt right now. Each week's treatment has been pretty hard on me. I feel really awful by the end and for several days afterward. I think it's mostly from the pred. One more ritux IV to go next week and I'm done. Then I'm getting back in the pool. Some exercise will feel good, plus the cool water will help with the constant sweats.

onatreetop
10-25-2009, 01:30 PM
Holy cow! I thought 60 was horrible. I think I may have cleaned and killed everything and one in my way while running on the walls defying gravity.Dont know how I would handle that one. wow you are wonderful and amazing! I could use one of those nice cool pools right now too.

andrew
10-26-2009, 06:25 AM
That's NOTHING!!! When I were a lad we lived in't shoebox in't middle 'o road AND had to have 25kg of Pred before we went to bed.

Seriously though, I was a grumpy toad on 60mg. What, pray tell, was your general mood when on 1250mg? :D

Sangye
10-26-2009, 06:46 AM
That was hysterical!! I sure needed the laugh, Andrew.

60 mg pred is nothing to sneeze at. But yeah, 20 times that was pretty tough. It made me very depressed and very angry. In a way it was a good experience to have such huge extremes, because now I can identify more subtle pred effects in myself and others. I have great sympathy for the person I was in those early days. My docs didn't explain anything--pred or other. I had horrible complications that were ignored until they almost killed me, and a rheumy who botched my care so badly I had permanent damage. It's given me a lot of compassion for other Weggies. It breaks my heart to read about other Weggies struggling, especially those newly-diagnosed.

andrew
10-26-2009, 06:56 AM
That was hysterical!! I sure needed the laugh, Andrew.

You're welcome. I can always be trusted to make fun of a serious situation. I cracked a joke at a funeral once to the husband of the lady we were burying. He laughed :D


It breaks my heart to read about other Weggies struggling, especially those newly-diagnosed.

Yeah, if it's hard for us it's completely overwhelming for someone that's just been thrust into the weggie world for the first time.

Jack
10-26-2009, 06:56 AM
When I was on 1000mg of pred IV I was warned that it would give me mood swings, but I noticed nothing at all other than the great feeling of getting better! That is not to say that it did not affect me, just that I was unaware if it did.

Sangye
10-26-2009, 09:40 AM
When I was upset at whatever (doctors, Wegs, etc...) my therapist would always say things like "Well, I'm sure some of it is heightened due to the effects of the pred." I couldn't see it at all, until much later. BOY was it heightened!!

onatreetop
10-26-2009, 11:23 PM
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.

Sangye
10-27-2009, 12:51 AM
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.

onatreetop
10-27-2009, 01:37 AM
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?

Sangye
10-27-2009, 01:41 AM
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.

bboop
11-08-2009, 03:45 AM
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

Sangye
11-08-2009, 04:06 AM
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.

onatreetop
11-08-2009, 06:07 AM
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

Jack
11-08-2009, 06:21 AM
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.