I have been on Cyclophosphamide now for about 3 months and it was going really well. Well about 3 weeks ago I had a scleritis flare which was really painful and gave me a week long migraine because all of the eye socket was also inflamed. I have had 2 orbital floor steroid injections over the last 3 weeks and now i’m sporting a lovely bruise under my right eye.
Anyway I digress, back to kerataconus news. My doctor said that I desperately need grafts in both eyes but particularly in the left and we have been working to get the left one as healthy as possible before surgery, i.e. getting rid of the scleritis and corneal neovascularisation as much as possible. If I have the graft with the blood vessels growing into it the transplant will most likely reject and be a disaster (my doctors words).
I saw him on Wednesday and he is now saying that the vision in that eye is so bad due to the blood vessels we may as well do the surgery soon as we have nothing to lose if it fails. I have no useful vision out of that eye now even with a lens in so I tend to agree with him. It will make the surgery a bit more complex as he will have to cauterise all of the blood vessels first. I don’t just have a few blood vessels I have loads and they are really deep and growing into the middle of the cornea.
I am seeing him again in 2 weeks for a review of the scleritis flare so I will try and pin him down to a timescale of when my surgery is likely to be then. They are thinking about increasing my chemo to try and stop the break through flares which may not be fun as I might get increased side effects. I am prepared to do whatever I need to fix my eyes though.
The pic is a corneal topo of my eye taken probably about 8 years ago, its the only topo I have. I reckon my eye has changed heaps since then I would love to see an updated one!
Well that’s it for now, I have surgery in my not too distant future which I am very excited about, It will be nice to have an eye with some vision in it as currently I am seeing through a white haze.
I have been on the Cyclophosphamide for just over 6 weeks and although my eye pain has got a lot better I am getting some horrible side effects.
The first couple of weeks were great, I was like chemo is awesome, haha then it hit me with a vengeance in weeks 3 and 4 with plummeting blood pressure. One weekend it was so low I couldn’t hardly stand upright without falling over. Fortunately that one has almost resolved itself.
The latest side that I have hit me in week 6, Myalgia! Omg the muscle pain is all over my body and horrible. Every single muscle in my body hurts. My joints hurt too but the muscle pain is worse. I notice it is a lot worse when I get chilly like when the air-con is a little bit cool at work or in bed in the early hours of the morning.
I am finding it hard to walk up stairs, and going for my daily walk feels impossible at the moment, I feel weak and sore, a bit like an old lady actually. I had my flu needle at work today and the nurse really hurt me because she pinched my skin together before putting the needle in. I couldn’t even put my fitbit on this morning because it hurt too much to have it on my wrist.
I hope that this isn’t going to be a long term thing but I kind of suspect it will be. The Endoxan is well and truly in my system so I don’t think I will be feeling better any time soon.
I have to be on it for about another 6 months so joyful times to look forward to!
I guess I need to look at the positives in that it is helping with my eye disease, but when you feel like crap it’s really hard to look at the positives, you just wallow in self pity a bit as the pain takes over.
I am still going to try and do my daily walk, even if it is slower and shorter, I think it be moving will probably help. I hope so anyway!
For the past 6 weeks my eyes have been really good in terms of the scleritis. I have had a white eye and no pain, even my vision seemed to be a bit sharper. I was really hopeful that the Cyclophosphamide (Endoxan) was working so that I could concentrate on getting my vision better and my eyes ready for corneal transplants.
Yesterday afternoon I seemed to start a flare up, today my right eye is a little red and quite painful. I am freaking out and a bit gutted actually because I was really thinking that this was the medication for me and things would just get better and better. Today my vision is awful and I am really struggling.
I saw my eye doctor yesterday morning and he was pleased with my progress, then a couple of hours later I’m flaring, how is that for bad luck, it could have happened when I was at the eye doctor!
The Endoxan has been a bit of a bumpy road so far, the first couple of weeks I felt fabulous then I felt like absolute death for a couple of weeks as my blood pressure plummeted. I could hardly stand up without falling over. We got the BP sorted out and I started to come good again, until yesterday. Now I feel really worried that I am going to fail another treatment.
I have a swelling under the right eye and the doctor thinks that there may be a cyst in there caused by the regular orbital floor injections I have been having over the last year or so. It looks ugly like I always have a bruised eye. If it’s not a cyst it will probably be thickening of the tissue from the needles. I hope they can do something about it.
Luckily I am seeing my Rheumatologist tomorrow to see what my bloods are doing and to get some feedback on my progress. Hope I get some positive news, maybe I need a dose adjustment.
Wow we just had a snake in the office and all the girls were like OMG theres a snake, and i’m like what snake, where? just shows how bad my vision really is. That makes me really sad.