hi tim 😉

so yeah, i was diagnosed in dec 07 with cidp. got lucky and have one of the best neurologists in the field (dr. jonathan katz).

unfortunately, we waited a bit too long to begin any kind of treatment, hence i progressed to my worst point this past summer where i had difficulty even lifting myself from the couch and making my way to the bathroom. i was very sick and weak.

a loading dose of ivig not only did not work for me, it actually made me worse. against my initial wishes, my neurologist and i agreed to go on prednisone. the thinking he expressed was to relieve the disease enough to get me stronger and more able to try another course of treatment that takes longer to affect you than prednisone. so i started at 60 mg / day, sometime around june and we have been gradually trying to reduce the dose to see at what point i would potentially relapse – the obvious goal being to be on as little as necessary for efficacy. I HAVE HAD NO REAL SIDE EFFECTS DECREASING MY DOSE AS I DID IT BY 5 OR 10 MG PER WEEK. i am now at 25 mg.

i did and do however have plenty of side effects from the prednisone itself. positives first : i immediately felt relief, literally the morning after my first dose of prednisone; i was stronger and had more energy and significantly less pain – to give you a specific example, after 24 hours on prednisone, i was able to hoist myself off a couch without assistance. subsequently, pred felt like a huge relief for me, as those 3 positives ensued.

now for the negatives, the side effects : in the beginning, mostly unnoticed, the feeling of being bloated and stomach upset as it’s hard on the lining of your stomach and gi track. to compensate, and with my doctor’s permission, i took an acid reducer.
taking an acid reducer is a life-saver for your stomach on pred, and definitely take it with food to help in this regard.
as an aside, pred has a nasty taste and the pills are porous so whatever you’re washing it down with have it ready to go.

i quickly began gaining weight, despite eating consciously, and of course the weight that you gain on pred is strangely distributed. you may have heard of cushing’s syndrome – the weight gain is primarily in your face, belly, and upper back (it’s a good look !!)

i’ve been reassured by my neuro that once you stop pred you just return to your normal shape and size, and many people i have spoken with have attested to just that

as my neurologist reminds me, stick with it for now, it’s temporary

my blood pressure runs and ran a little high on it, but nothing the doctors were particularly concerned about, as long as it doesn’t spike it’s considered par for the course while being on steroids. having said that, there are some whose blood pressure will be too high and who simply cannot remain on it.

the other concern is blood sugar, and mine is higher than normal, but not of clinical concern.

having said that, some people become diabetic and i know at least one who remains diabetic even after not using pred anymore (but i don’t think that’s the norm). my understanding from my neurologist is that high blood pressure and/or high blood sugar ceases to be a problem when prednisone is stopped

another side effect is tremors and shaking. my hands shake such that i wondered if i had parkinson’s disease. also when i am standing, let’s say bracing myself against a wall or holding a table, my legs will sometime shake – so you can live with the shakes, but they are sometimes annoying and embarrassing in public.

another side effect : charlie horses. so i assume you know what that is : your muscles start cramping up and spasming – i get them in my abdomen, front and backs of my thighs, and the inner part of my forearms. the charlie horse problem only developped about 3 weeks ago as a side effect, even on the reduced dose, so it would seem that some of the side effects of pred are cumulative – in fact, i am quite certain they are, which leads to the next side effect :

the “roid rage” issue – in my case, for the first 3 months i had no emotional mood swings of any kind, but about a month and a half ago, that seemed to shift a little : i felt tense and on edge and to again concretize it my quickness to anger became apparent when i drove, but in other ways too, being short with my partner or crabby with my housemate (but i never kicked a dog 😉
so to compensate i pay close attention to my feelings and the fact that they have the potential to be erratic and attempt to behave appropriately.

you may break out with some acne – i have a prescription topical antibiotic lotion that i use after i wash my face and although my skin changed a little bit i have been able to keep that aspect under control

on a positive note, if you have lost your sexual ability, it gave me mine back – that was pretty cool because it had been gone for several months

another VERY annoying side effect : sweating – i can’t express stronger how incredibly hot and sweaty you can feel on pred, and i live in san francisco where the temperatures run low — i would have to shower and change clothes regularly as they would be drenched at times.

in general i felt speedy sometimes but i would do it all again. i had no strength left, i could barely feel anything from my butt to my feet, and my hands were completely numb. the pain i was living in was significant and i was really in need of some relief – that’s the key with prednisone : it’s designed to give some relief and to quote my neurologist to “pull you up … so that we may use a safer drug to treat the condition.” and nothing works like prednisone to do just that.

currently, the goal with me is to eventually wean completely off pred and let the cyclosporine continue to work, and by the way i’m happy to say that it’s been working very well such that i don’t even feel the decrease of prednisone so i’m feeling positive right now.

i’m really sorry you’re dealing with this condition Tim, i tried to be as specific as possible to answer your side effect concern with pred, and i completely welcome you to stay in touch with me, ask me any question you may have, or to just chat about the illness. feel free to call or write if you want to follow up and talk about any of this.

warmly,
alice

I can sympathize with you deem. My reaction to even a low dose of pred (for my sinuses, 5mg) I gained weight. I couldn’t get full. I don’t understand, it must mess with the metabolism or something. Hang in there!