Over two years on and my scleritis is still flaring continuously and at times is extremely painful. I have failed prednisone, rituximab, metrotrexate and azathioprine treatments.
My doctors have brought out the really big guns this time, I have just been started on 100mg Cyclophosphamide daily. Already I am feeling nauseous so I know this isn’t going to be good.
Before taking the med I was reading up on it because I like to be informed about what i’m taking and the side effects are horrific. If the only thing that happens to me is I get nauseous and lose my hair I will be doing ok! Yes you can even lose your hair at low doses. One of the common side effects that is concerning me a bit is that you can get really bad cystitis and blood in the urine. Because the drug is so toxic it can’t sit in your bladder you have to keep drinking and peeing to keep it clear. It can’t be taking at night because it cant sit in your bladder for that long.
Well this is day 1 of the treatment, I have to go for fortnightly blood tests and see my rhumatologist again in 6 weeks. Lets hope this works!
By the way another side effect is appetite loss, I really hope I get that one because I have medication induced weight gain and I am desperate to get some off. I will be really happy if I get that one!
Will keep you updated, have a good weekend.
Enough is enough, I am sick to death of gaining weight from a combination of psych meds and prednisone, it stops right here, right now. Both meds give me a voracious appetite and I haven’t been able to do anything about it. Good news, I’m off the pred as of today …. Yay for me. Bad news is I’m on the psych meds for life so I need to get a grip and not let it affect my health and mental wellbeing. The weight gain is a killer; I reckon about 20 kilos in a couple of years ….. Not good!
So what am I doing this time to make it work? Well I have hit rock bottom so have the determination to succeed with this, I can only go up, and secondly I have a couple of tools in my toolbox to help me succeed and make the journey that little bit easier.
Garmin Vivosmart & heart rate monitor.
My partner and I have just purchased a Garmin Vivosmart and heart rate monitor. I absolutely love it. It gives me all the data I need – average and maximum heart rate, steps, distance, calories burnt etc. It is very good quality and feels nice on the arm and it syncs to my iphone or tablet. The app is a little on the basic side but it does everything I need and I haven’t had any trouble with pairing the devices or syncing my data. This little gadget is giving me the motivation I need to get up and move. It awards badges when you reach certain milestones and you can compete with friends in step challenges to get you moving. It even buzzes on my arm every hour to remind me to get up and take a walk for a couple of minutes. A good feature when I am sitting down all day at work! As you can tell I am extremely happy with my Vivosmart.
Lite N Easy
Here in Australia we have a company called Lite N Easy. They devise healthy low calorie menus and meals and deliver the food fresh to your door. I have been on Lite N Easy before but after a few weeks have slipped into old habits and had extra snacks etc. It’s quite expensive so it is not worth doing if you are going to cheat. As I say I am at rock bottom and determined to make it work this time so I got my first delivery yesterday. I can’t wait to really get into it and see some progress on the scales. I’m such a dummy, I forgot to weigh myself this morning so will do it when I get home so that I have a starting weight (scary!)
My Metabolic Doctor
Every 6 weeks I see a doctor at a metabolic clinic that is run for people who are having weight problems when taking psych meds. Just going there keeps me motivated; knowing that I have to get weighed makes me try that little bit harder to lose some. Since being on the prednisone since last November I have steadily gained weight each visit so I am hoping that now I am off it I can start to lose some weight again.
The clinic is great they never judge when I put on weight, they offer suggestions for eating plans and exercise but it is humiliating to step on the scales and have gained so I really want to turn this around and make my doctor proud. One time she called me her success story, I want to be that person again.
So that’s where I am at today. Full of hope and motivation. I have the support of my wonderful partner; we are doing this together and will succeed!
Watch this space for updates ……