Hi Sue............his current GI has categorized him as "steroid dependant" so I am very concerned about
not only his being on the prednisone that has already induced some oste
opena in the spine for which he is now taking Fosamax weekly for. Based on info I have read here we are doing a very slow tapering....he started on the 40 mg with the Imuran mid May. He is about
to start 17 1/2 mg prednisone and then 15 after 10 days then 12 1/2 and my question when he gets to 10 how long should he stay on that and then maybe taper by 1mg amts????? We'll see what the Mayo clinic thinks as well.
Our goal and hope is to get off the darn prednisone once and for all. So many of the side effects from that drug he has had and does have and hopefully the other meds will be able to do the job.
I posted elsewhere a little bit ago.....in the overall picture he is having more better days than bad ones. The problem is his reliance on the pain patches (every 72 hrs) and morphine sulf every day. If he gets a really painful day then he will take a darvocet to take the edge off. This is what concerns me too. However if he didn't have the pain meds he would be in bed most of the day otherwise and really miserable. The pain meds do not seem to make him "spacey" or out of it. He tolerates them fine - but is there an addictive side I need to worry about
. He tells me to stop worrying - it is what makes the difference in being able to function or not and I can't nag and argue about
every single thing. I am constanly at him reminding him of this or that or sharing info and news from HW which he is very receptive to.
For instance this week - Sunday was not a good day and we were hosting a party for a friend (he should have taken a darvocet at 1pm and waited till 3pm when the party was in full swing and forget it - it just didn't help. ) He woke up Monday feeling awesome, no pain before, during or after BMs - did errands with me - we had 2 couples over for cards that night and he was his "old self". Tues was an ok day - bearable with some discomfort - Wed played golf - Thurs went out to our town square to see a political appearance of a candidate and played golf later. Today feels rather good and we have a Dr appt this afternoon. Now as good as this week was after dinner he is kind of wiped out and goes to bed and rests and watches TV for the remainder of the night. HOWEVER regardless this was a great week overall. We kind of take what we get and try to be grateful for it.
So when he gets a really miserable day and we look over what did he eat or drink in the past 24 hrs nothing seems to have any correlation it is confusing. So I guess sometimes it is just an unpredictable thing even though all things being equal it will act up.
Maybe the Imuran and prednisone tapering is starting to do what it needs to but the real encouraging thing will be when he does not need pain meds to keep him functional.
The label of "steroid dependant" does concern and confuse me in this overall picture and not totally understanding if I am being too niave and optimistic about
his getting off it and being able to stay off it.
Not sure if the Mayo clinic's regimine will include an appt with a colorectal surgeon just for FYI and a dietician for some helpful hints most of which I have already gleaned from here. (If he hears it from the "professionals" then maybe it will make even more of an impact.) If not I have those questions as well.
In comparison to May when I had to bring him to the hospital he certainly is so much better. Of course everyone wants to get their life back and be able to do what they were able to do before this hit full force. His stamina, energy level, fatigue, loss of muscle tone he would like so much to try to get a handle on. The most physical exertion he can do is the golf and he only plays the shorter executive courses and he is totally wiped out after. He will apply for a handicapped sticker for the golf cart and that will cut down on some of the walking which should make him less fatigued. Once the temps get a little cooler that should help too.
So I guess he is on the road to something right now...not exactly what. I wonder if the Mayo will want another colonoscopy even though he had one May 5th or so to see the progress of things. I kind of hope not as I am afraid it will undo things and put him in another flare possibly. So that has me kind of worried too.
Thanks for the prednisone advice as I had that as a question but I will make it more detailed now.
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 good days & bad days 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg