Sunshine and Steroids

I'm a British guy living in Phoenix and working in Santa Monica, with Pemphigus Vulgaris. I'm working hard to beat my immune system and get off steroids. It's not easy...

[sunshineandsteroids]

State of Affairs

So here’s a quick rundown of my condition, to baseline things.

1. Prednisolone 5mg per day as the main treatment

2. Mycophenolate Mofetyl 1.5g per day as the second line

3. 10mg each of Amlodipine and Ramipril to treat the hypertension I have from the steroids and the weight I’ve gained because of the steroids.

4. Omeprazole 20mg per day to help my stomach handle the steroids

5. Steroidal ointment and shampoo for my scalp

6. Methotrexate 4 tablets per week - not taking as I subsequently discovered that it may cause birth defects and I’m wanting a child with my wife

I weight 285lbs, up from a low of 190lbs and down from a high of 295lbs. My blood pressure was recently measured at 128/68 well down from 175/105, which was my high from around a year ago.

I’m on a low sugar and simple carbohydrate diet and I’m regularly checking my blood sugar to see what spikes it and if it is too high. I think I’m either very close to being pre-diabetic or I’ve slipped over. I don’t want that condition as well.

So that’s it really. I’m overweight, I take a lot of drugs, I’m working hard to live better, my first big win has been my blood pressure.

[sunshineandsteroids]

Day One

It’s Monday, I’m in the office in Santa Monica and it’s a beautiful day outside. 

I’m a month into my new job and everything seems good so far. However part of my training requires me to present to a group of my peers on a regular basis. I stand in front of them and do a “whiteboard” presentation. What would have been a piece of cake for me over 15 years ago is now a problem. My steroids are ensuring that I go into the presentation in an overly stressed and anxious state and its playing havoc with my ability to present well. 

It’s things like this that make the steroids a problem. Where in the past I would have been calm and confident, I now come across as nervous and erratic. I can’t turn around and say, “sorry lads its the medication I’m on”, but by the same token I kind of feel that I am in some way “handicapped”, but in a way that the workplace and legislation does not recognize. I have to perform, despite my problems, but I cannot declare my problems to my team in case they decide I’m not worth having on the team. In addition, if I can’t present well, I don’t think I should be on the team :) Nevertheless, like many people with invisible conditions, you have to perform well, but nobody ever knows or recognises the extra efforts you have to go to.

I need to get off these steroids.

[sunshineandsteroids]

7 years in

In 2010 I was diagnosed with Pemphigus Vulgaris. I had pain and blisters in my mouth and my dentist referred me to a specialist in Leeds. Since then I have been on Prednisolone with doses up to 40mg per day and Mycophenolate Mofetyl. I’ve recently moved to the US and I and trying to use the change of scenery to kickstart my fight back.

In the past 7 years I have gained around 100 pounds in weight. I’ve seen my testosterone levels drop, my upper body muscle dissapear and my blood pressure rise. Most concerning of all has been my loss of cognitive ability and major problems controlling my mood and temper.

I’m writing this blog, partly to reach out to other people with similar conditions and also to try and document my efforts to beat this condition. Hopefully by sharing my progress I greater incentive to succeed and not to allow myself to continue down this current path.

After struggling in multiple jobs and seeing a promising career plateau out and seeing my wife struggling to handle my moods, the time really has come for a line to be drawn in the sand.

This blog will not just be about Pemphigus, hopefully it will also serve to show that there is more to life than stressing about skin lesions.