I've been having weird symptoms for months now, long before I started prednisone. I've been having problems as far away as a year and a bit ago. I've spoken to numerous doctors about
it and have even made lists but unfortunately they just check the same stuff over and over again, tell me I'm healthy (aside from the UC which they do deal with) and send me on my way. I'm really trying to get to the bottom of this and find out what is what. I made a chronological list of all my problems in the past year. I don't know if these are related to UC or what but since UC is the only thing I've ever been diagnosed with, I'm going to start there. I put all the symptoms in bold: August, 2010
Admitted to hospital for three weeks after suffering a six month long flare that wreaked havoc on me. Prior to the flare, I had also been suffering from heart palpitations (from stress?)
, very mildly painful urination
(it's not an STD--I've been tested and have only had one partner) and I've constantly been hacking up phelgm
for the past year and a half. There is more but these are the most salient issues I had dealt with up to being hospitalized. I've also been having panic attacks
and anxiety issues
The only meds I had been to up to being hospitalized were Asacol and the occasional enema. I was desperately trying to get the appropriate medicine but I was in Japan at the time and the doctors there didn't know what it was, so they often just sent me home and told me to get more sleep. It took me several months to find a doctor that would refer me to a GI specialist who put me on basic meds (6x Asacol per day--wasn't enough). I finally broke down and drove a good 200km to go to a hospital with a well known GI clinic. They admitted me right away and I recovered for three weeks. Sept. 2010 - January 2011
I was put on Imuran and Asacol. The Imuran didn't take (I had horrible joint pain
) so I went down to just Asacol. I also took enemas regularly. I returned to home country (Canada) for three months during this period. I relaxed a lot and felt about
95% better with very little symptoms of any kind. Then I returned overseas and went back to work in early January, this time for a different company located in Seoul. February 2011 - March 2011
I quit smoking
in early February and began to have a horrible flare-up. Like, blood city. After a few weeks I sought treatment and was originally put on Pentasa enemas and I was taking 12 Asacol tablets a day. They had some effect, then I switched over to Steroid enemas and they made the flare up worse. I was having hot sensations (lower back and front), joint pains
and I began to have muscle spasms
. My right upper arm and left thigh would tense up and start twitching
. It was painful. The GP said this was a deficiency so he put me on Magnesium and general multivitamins.
Quitting smoking gave me what I thought was a sinus infection
. I'd cough up tonnes of green/yellow phelgm
, sometimes with blood in it (from my sinuses and not my lungs). My nose was backed up for a week and then it cleared. I took tonnes of antibiotics (about
a month's worth) and other medications to fight it. The medications here never come with names on them so I can't break it down for you, though I was on antibiotics of many varieties for more than a month. There was constant pressure around my temples, pain around my eyes, I had/have ringing in my ears, pains on the top of my head, pains in pretty much all my sinus cavities and god knows what else
. March 2011
The flare-up was still on going with lots of blood, so I went back to the GP and he referred me to the university hospital.
This time I saw a proper GI specialist. He put me on 30mg of Prednisone. It's the first time I've been on the drug. He also gave me what would seem to be a life time's supply of Salofalk 2mg enemas (I seriously have 15 boxes of the stuff).
The prednisone took affect right away. I started having somewhat normal poops after a few days and blood free poops after a week. My poops still aren't normal yet (and it's the end of April) but they're not bad either. A lot of it is my crazy diet becaues prednisone makes me eat like mad.
As far as side effects go, I had a headache for the first couple days, lots of food cravings, minor cheek swelling that no one noticed and tingling sensations on the top of my head and around my face. I wasn't sure if those were related to the sinus infection or what. The sinus infection was in full swing so I was seeing an ENT specialist and was put on two three-day courses of antibiotics and one five-day.
I started to have weird eyelid sensations and my eyelids began to twitch sporadically
. I tried ignoring it but it kept going on. I thought it was the sinuses. April 2011
Pretty much a continuation of March. I have my UC under control by prednisone but I honestly can't tell which of my current symptoms are prednisone, sinusitis/sinus infection, stress or god knows what else. I've been tapering the prednisone too. The doctor hates prednisone and doesn't want me on it for long. I started at 30mg, tapered to 20mg after two weeks, tapered to 15mg about
five days ago and I'm going to taper to 10mg in a little bit more than a week.
Last Tuesday I went to the doctor on a day off because my eyes are getting weird. It feels like my eyelids are swelling a bit (not visible) and the corner of my left eye seems to be swollen... like it's extended. The corner of the eye looks like it's growing in towards the bridge of my nose and I can feel a bit of pressure/uncomfort there. Sometimes in the morning I wake up and my eyes themselves are reddish. I've never had eye problems before so I freaked out and went to the doctor.
I saw a proper ENT specialist at the hospital. He looked, sent me for five x-rays, then when I came back he told me that I'm completely normal sinus-wise and to my shock, that I don't have any signs of a sinus infection. He said that if they're not on the x-ray, I don't have them. He gave me a steroid nose spray and sent me home. That means what I thought were sinus infection related symptoms are not.
My eyes are still bugging me and my jaw is bugging me
. My cheeks mildly twitch occasionally, as do my eyelids and my jaw feels as if I've been clenching the crap out of it
in my sleep. I've been trying to relax it and it's getting better--once it was much better after a particularly good night's sleep, though since I haven't been able to sleep much I can't really fight it this way...
I should also add, on top of all of this, my new job has been so stressful that I actually put my notice in a month ago and I'm transferring to a new company early next week. I'm moving to a much quieter city and working better hours (I work 16 hours a day at my current job for six days a week and am lucky if I get more than 5 hours of sleep per night). Also, January marks the first time I've lived in a major city which means I'm not used to all the pollution and other things a major city does to you. I'm hoping that smaller city + more relaxed job + easier life will help some of these symptoms.
Anyway, I'd really like advice here. As I've said, I've seen tonnes of doctors and none can really help me. They usually just get puzzled and send me off because no single problem that I have is serious. I'm not in any major pain. Most of these symptoms are passing and temporary. Others are not (been suffering from heart palpitations for more than a year and painful urine for a year and doctors just ignore those symptoms when I bring them up though I must admit both symptoms come and go and I haven't had a bad heart palpitation in awhile).
Any advice is appreciated. I've had to turn to the internet. I used to Google my symptoms individually, constantly but since I've also been suffering from panic attacks occasionally over the past year, it hasn't helped. Thanks in advance.
Diagnosed in 2004 at the age of 19, however I knew I had UC since I was 16
No major flare ups until 2010 when I had to spend three weeks in a hospital
I'm currently on Asacol x9
Pentasa enemas and suppositories
Currently on Prednisone 15mg (tapered from 30)
I'm a lacto-ovo vegetarian and recently quit smoking
Post Edited (Wavefunction) : 4/25/2011 5:57:05 AM (GMT-6)