Seen in clinic today. Bloods remain just about in normal range. They have agreed a very gradual reduction in steroids from tomorrow. Going down by only 1mg per day for one week at a time. To be seen again after more bloods in 4 weeks. Also to be referred for another scan to check all is well in the liver/pancreas area. If this shows any problems, then for an endoscopy to check for complications such as portal hypertension/varices etc. which is not uncommon with this condition. Am having a consultation at the nuffied on Weds to see if the spider nevi can be lasered.....hepatologist not keen as she thinks they will just return due to the condition being chronic...and this would be a waste of money. Have tried to expain about self esteem and how when I look in the mirror I no longer recognise myself. She felt that self esteem might be worse if the spider nevi returned after having had treatment. We agreed I would have the consult, but not proceed with treatment before feeding back to her. For her part, she will research the benefits/ success of treatment for people with  chronic liver disease.

Had my first bone scan today after 13mths of steroids. For once, it appears to be good news, and the steroids haven't caused too much dammage to my bone density. Am still really struggling with stamina and having to go back to bed for a few hours most days. Must be down to the condition as bloods were normal last week.

Clinic today. Bloods now normal....shame I feel anything but normal. They seemed keen to consider increasing the Azathioprine, to see if I could reduce the steroids. The rationale is that as it is prescribed according to bodyweight.... now I'm 8kg heavier (thanks to the steroids) it could be increased and potentially be more effective. So basically, they give me a drug to make me fat in order to increase the other horribly toxic drug. If I hadn't been made so fat it wouldn't be necessary. Not sure how much more of this shit I can take. Despite bloods being normal, I'm to stay on 10mg pred for another 2 weeks....just to be sure. I have asked them to consider budesonide as an alternative to the pred (less side effect and more expensive, so better for me but not the NHS)..they're not keen

Well the job centre was interesting. Very public and very humiliating. It seems my employment support allowance will run out in March, and then I get nothing as I have more than £16000 in savings. I can (and will) apply for PIP payments which are non means tested, but will not be nearly enough to be able to manage on. I know I should be grateful I have savings, but somehow, having worked all my life and paid  all my dues, I foolishly thought the savings might make my old age more comfortable. As always,the harder you work, the less you get, the less you work, the more you get......something has to be wrong somewhere or is it me? Not entitled to a bean until savings are used up. Am feeling so thrilled that this bloody disease decided to join me for the rest of my life, we can grow old and poor together.
Bloods still out of normal range, for repeat Friday, Hosp next Monday. Weight out of control, all mirrors in the house banned.

Haven't written this for weeks! I lost my job on 11th August as expected due to this pain in the arse illness. They couldn't have been nicer about it and said they would be happy to re employ in the future (if I'm ever capable again), so I guess I can't complain. I'm going to anyway. I am sick and tired of this condition.I'm sick of all the tablets...immunosuppressants to calm/control the immune response, steroids to help that, omeprazole to protect my tummy from steroid damage, calcium and alendronic acid to protect bones from steroid damage and potassium to reduce cramp caused by steroids.Then theres the daily ritual of E45 and eurax cream to try and calm my skin(caused by the steroids) and special shampoo/ conditioner to reduce hair loss(caused by the Azathioprine).Oh and of course, making sure I eat at regular times and take a full glass of water with evening meals and Azathioprine to reduce the risk of nausea at night. Then theres the weekly ritual of having to wake early to take the alendronic acid before anything else with a full glass of water, remain upright for one hour to prevent burning my oesophagus. Forgive me, but I like a cup of tea within minutes of waking, not keen on trying to stay awake whilst upright for an hour before I can do anything else.My life is ruled by this condition and there is no escape from it. Bloods  were in the safe area for a whole total of about 6 weeks. They are now climbing again and I've just started the whole bloody merry go round for the 3rd time. Steroids have been increased again and so back to frequent blood tests. If I'm grateful for anything, its that I didn't go back to work, because if I had, I would be off sick again after only 1 month. I never even got to feeling less tired/confused/achy etc before its gone wrong again. So, to pracey, I'm still miserable, itching all over, fat, spotty, achy,have thinning (but now short) hair, and have no sustainable energy. I hate looking in the mirror and all clothes are uncomfortable.Every day is a struggle and a challenge that most days i don't want to take on.
For a bit of variety from all the medical appointments, I now have a letter asking me to attend the job centre to discuss ways of helping me back into work.....what bit of I'M SICK don't they get??? Presumably sick notes from the GP and letters from consultantts and a P45 saying  I've been terminated from my contract on the grounds of capability due to ill health isn't quite clear enough for them.

Today I had a meeting with my manager and human resources. The bottom line is, I am no longer capable of fulfilling my role as a primary care dementia practitioner. This is a role I had longed for, and was enjoying immensely. I am so disappointed. It wouldn't be so bad if I was no good in the role, the problem is that I was, and it gave me great satisfaction to work so closely with those living with dementia, and those families/agencies/surgeries who are supporting them in their homes. I have tried everything I can think of over the past year (I first went sick last August) to get myself back to a normal level of functioning. I have no more weapons left in my armoury. A further meeting will be held on August 11th where my contract will be terminated. My manager has been brilliant, she could not have been more supportive, but I can't fulfill my role when I have constant "steroid brain fog", or feel tired all the time. I don't even feel I look presentable anymore. My skin is itching and rashy, my hair is falling out, and I have spider nevi on my face and neck. I have also gained a stone and a half since all this started. I know it can take between 18 months and 3 years to reach remission, and whilst I am pretty much biochemically in remission, clinical remission seems a long way off. I have no choice but to give in to this and just accept that what will be will be.
The good news is, I saw the eye hospital last week, and whilst I still have raised pressure in my eyes, there is no sign of damage to the optic nerve, so no treatment needed.....yet. I have also seen the dematologist, but due to brain fog, can't remember what she said was wrong with my skin, but it's benign and needs no treatment, just stay out of the sun. Due for bloods next week and hep clinic afterwards.