I saw my Rheumatologist this morning to discuss the next step in my war against scleritis. So far I have failed Methotrexate, Cyclophosphamide, Azathioprine and Rituximab. My doctor reckons that because scleritis is rare not much research has been put into treatments so they are just trying everything until they find something that works.
Ok so the plan is either Infliximab infusions or Humira injections. Because the treatment is expensive the hospital has to put a plan in to the expensive drug committee stating my case and hopefully they will approve one of them. The doctor reckons that they will probably go with the infusions because you can give a larger dose at once and you can be more precise with dosing as it goes on bodyweight. It will be a pain having to have to go to the hospital for infusions but at this stage I need to do everything I can to get rid of this nasty, painful disease before it wrecks my eyesight any more than it already has. I already have awful vision from the Keratoconus so I really don’t need the scleritis damaging my eyes too.
I am hoping that if the treatment works it will take away the swelling that I have under my eye. It looks awful like I have been punched in the eye and is from inflammation and the fortnightly steroid injections I have to have. I often have a black eye after the injections too. When I am meeting someone for the first time I really hate to look them in the eye because my eye looks so ugly. I find myself looking anywhere but their eyes which can be perceived as rude but I don’t mean it to be I am just a bit embarrassed.
The drug committee only meets once a month so it could be a week or two until I hear anything. In the meantime I have to stop the Cyclophosphamide at the end of this week as I have been on it for 6 months which is the maximum duration as it is an accumulative dose and I am now up to the maximum dose. It’s not working any more anyway so there is no point in continuing with it.
I will be glad to be off of the chemo and it’s associated side effects, although I know that the new med will have it’s own set of sides to contend with.
I felt that it was a really positive meeting this morning. The rheumatologist was great; she really explained things and listened to my questions and concerns. Let’s hope that this next line of treatment works!
Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate. I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.
I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza. It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!
I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back. It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies. But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.
My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment. I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery. I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain. The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.
I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem. I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!
Love a laugh and a good sleep so this quote is very apt for todays post!
I’m getting a little bit overwhelmed with issues ….. weight loss and health. I need to remember this quote and break it down into little chunks that are do-able. Lets take it day by day and see how I go ☺
Knew I was doing something wrong!
I really enjoy walking for exercise. After a good walk I kind of get a happy buzz and feel really good about myself. Walking has so many great health benefits and it’s free!
I like to walk with a buddy, we walk our neighbourhood in the evenings after work and we like to hike the local Forest at the weekends. The dog loves it too! We strap on our Fitbits and away we go there is no stopping us!
A couple of weeks ago the whole family (partner, daughter and I) got a Fitbit Charge HR each. It has really helped to get us motivated to move more and get out and go for walks almost every day. The dog is loving it and getting fitter too.
It’s amazing how a little gadget can spur you on to do more. So what do I like about my Charge HR?
I love how you can monitor 24 hour heart rate, that’s a really great feature not having to wear a chest strap.
I like how it automatically goes into sleep function without having to press a button. With my old one I used to forget to take it out of sleep mode when I woke up thus ruining the whole days stats.
It has a proper watch buckle to do it up instead of those awkward pop in things that you can lose so easily. In fact my daughter had a Charge model for only one day before she lost it, she then upgraded to the Charge HR.
I find the badges, challenges and awards really motivating. It gives me something to work to. I really enjoy breaking my own goals and going further that I thought I could. I love to beat my friends too, I push that little bit harder if it is close in a challenge to try and win.
All in all I am really happy with the Charge HR, the one downside in my opinion is that it is not waterproof so you have to take it off in the shower. That’s a pain. I guess Fitbit are trying to get people to regularly take their tracker off after they had to recall the Force due to people getting horrible rashes under the band. I do think though that in a market where there are so many great trackers and lots of them are waterproof Fitbit should have put this feature in too. I would have loved the option to wear it in the pool for a swim.
Battery life has been pretty good, I have been getting around 5 days before I need to recharge. Pretty good I think considering the HR monitor is going constantly.
Last week I achieved my Marathon badge, I walked 42km and I won a couple of challenges so it’s a good start to my fitness campaign. I would recommend the Charge HR if you are in the market for a fitness tracker.
This is so true, when I eat properly and exercise I feel so much better in mind and body. Even simple exercise such as a walk gives me a natural high and I feel so good about myself for going. When I am clean eating, my body feels better and my mind feels clear.
This is so true, I get gutted if I forget my Fitbit or the battery dies on me. It’s so much fun competing in the challenges every step counts and it motivates me to walk further and push harder.
First weeks stats:-
Distance 30.12 km
Floors climbed 34
This really made me laugh out loud, it is so true! When I was training for a 5k run I actually discovered that I can walk faster than I run! I run in slow motion like the bionic woman hehehe.