Continued
This has been a hectic week.
Dan went to see his consultant on Wednesday. She is concerned by the TIA's (mini strokes) Dan is having. He is also suffering terrible chest pains and dizziness etc.
Hilary has decided to start Dan on Imuran. This is a drug that will suppress his immune system and become his 9th daily medication.
He is having the initial blood test done to see if he can tolerate it and then we will be given the go ahead to start.
It is clearly not good for somebody so young to be on this type of drug but we need to reduce the steroids due to the damage they can do. It has to be better than a full blown stroke. Hilary, our consultant said she would like this drug started alongside his other meds to prevent " permanent damage".
As soon as we get the go ahead from her we will start.
Fingers crossed that nothing happens in the meantime.
11/11/12
Dan is now taking his steroids in the morning instead of the evening as Hilary has explained they will work better with the natural steroids his body makes.
Dan has continued to have chest and head pains today and states that he feels like he aches all over.
The nocturnal coughing was a little better last night. The vein in Dan's head has been coming and going.
4 Steroids Today
12/11/12
The nocturnal cough was bad again last night. Today Dan is not feeling too bad at the moment. The head pains continue. Things tend to get worse in the evening so I will check him again later. I am trying to presuade Dan to do the 24 hour urine test as I really need to get it to the G,P. It is a large container with liquid acid in the bottom. He needs to urinate in it for 24 hours.
I just want things to get moving so he can start on the Imuran.
4 Steroids today.
14/11/12
Still very chesty. Sharp Palpitations that make Dan cry out.
4 steroids today
15/11/12
Today has not been a good day. Dan's chest pains on his left hand side have been severe and lasting much longer than usual. He is also getting a stabbing pain in his chest.
His shoulders have been aching.
Tonight Dan was feeling dizzy and having nausea if he stands up too quickly.
His pupils were large tonight and were slow to react to torchlight. Dan felt the light to be unbearable although the light was not very bright. He has noticed this on and off with car headlights.
Dan was passing urine that was almost brown today even though he is drinking plenty of fluids.
Pulse 109 BPM. BP 147 over 79.
4 Steroids today.
19/11/12
Dan has been feeling very achey today and feels like the rash is trying to break through. He is still coughing a lot but has not had another incident today. I have had word from Hilary that we may get tahe go ahead to start the Imuran on Wednesday? I really hope so,
27/11/12
Finally started the Imuran. 3 x 50 mg tablets a day, I was worrying about him taking them until I had a wake up call a couple of nights ago. Dan had the large pupils again and could not bare to look at bright lights. The muscle that controls the iris was inflamed again so it could only reduce his pupil size very slowly. The same day the dizziness and the rash was back, He had to stop his car and get out until the dizziness stopped. He looked so pale and ill. He had also coughed up blood that morning and his lungs are so bad he does not get much sleep. The inhalers seem to have little effect.
He has taken the Imuran for 3 days now. He has been Ok apart from feeling really sleepy. I checked the info label on the pack and this is not listed as a side effect. Hopefully this will pass.
Dan also thinks he may have a cold coming. I started to panic as I do not know what effect Imuran has on this but I know I cannot keep him wrapped in cotton wool. He is 21 and should be enjoying his life. Instead every day revolves around this illness.
Fingers crossed Imuran will change things.
2/12/13
What an awful day! Dan has been on Imuran just over a week and came down with a cold. His lungs have been terrible with constant coughing and relying on his inhaler. This is on top of the usual chest pains, palpitations etc. The Imuran has not helped yet.
Tonight, he started itching in his right ear. He then felt like somebody had fired a gun in his ear and was in unbearable agony and his ear was " ringing". The pain and the sound is awful. I tried to explain over the phone to an NHS call centre worker who insisted the only symptoms her system came up with was an ear infection and to see his GP if he still had the pain in 3 days! They have no clue about Urticarial Vasculitis. The itching makes me wonder if something was flaring and I even told them his pupils had gone really large and bright light hurt his eyes.
So, I have to become the doctor for him. With the knowledge I have I know the only treatment to be sure he is controlled is extra steroids. Dan took another 20mg making todays intake 40mg. It is 2;30 am and I have just got him to bed after dosing him up with the strongest painkillers and hoping things will have improved in the morning.
8 Steroids today.
3/12/12
As I thought, it was the UV and not an infection. The extra steroids worked and he is OK this morning. The trouble with this illness is NHS Direct have no clue and can only get a computer programme to diagnose symptoms. They could not understand why his ear would itch before the pain. I even told them he had blood specks coming out of his nose but that did not match in. The computer said see a pharmacist or a doctor if still in pain after 3 days. The lady who took the call said that was all she could say as she was not medically trained.
Dan was vomiting this morning too. He is still deaf in his right ear and the ringing is still there. However, the main thing is that the pain has gone.
10pm
I spoke too soon! Dan has now got the same thing happening in his left ear. I did the same as last night. Painkillers and extra steroids. However Dan was being stubborn and would only take an extra 2. I hope they nipped this thing in the bud and 2 will be enough.
His chest was awful and I had to listen to him coughing and coughing for ages before he finally fell asleep.
6 steroids today.
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