Jiving on Regardless

{November 6, 2007}   Sleepy

For some reason the last four days has seen my entire body itching and I have scratched myself raw. I have bruises all over my legs where I have been scratching like a dog with fleas! I saw my consultant today and we assume that as I am now off my Cyclosporin and hadn’t (until this afternoon) had Infliximab for 7 weeks, I must be having an allergic reaction to something else. They have given me Piriton to ease the itching but so far all it is doing is making me very tired.

My blood tests came back normal this week apart from low iron levels so in two weeks time they shall make a decision as to whether I should go back on the Cyclosporin or not. They are reluctant as they think my kidneys will struggle again but they might give it a whirl.

I was kind of relieved to hear that I was still anaemic as I have been feeling really tired recently and finding that I am very weak when dancing. I am still completely stupid and always put my anaemia symptoms down to a million and one other things. I have no idea why I can’t just recognise these symptoms which I have frequently, as anaemia – it is like I have a mental block about it. Anyway, I shall up my iron tablets and try and get that sorted again as when it is level I feel so much better in myself.

Anyway, I spent another boring afternoon having the Inflximab infused. This time they had to give me a single dose of oral prednisolone to counter any possible hypersensetivity reaction to the Inflximab. I was fine and had no reactions, just boredom from being stuck in a hospital all day! Hopefully this will work, although they have no idea as I am still their only UC patient to take it and there is no case they know of people being on it without Prednisolone, Methetrexate Azathioprine or Cyclosporin so only time will tell. As my Gastro nurse says – I am “difficult” 🙂

Well I have not long just taken another Piriton and can already feel it beginning to knock me out so I shall crawl into bed. Fortunately N is off work this week so I am going to be able to take it tomorrow and not worry about having to care for the kids whilst completely dozy!

Off for a knock out sleep…


{November 5, 2007}   Back now

Ali updating her blog after a long absence (welcome back Ali – missed ya x) prompted me to get myself into gear and update mine, so here I am am.

Life has pretty much been the same as ever with family and dancing and nothing particularly exciting to report.  N left his job on Friday so next week (he has a week off now) will see us embarking on a new chapter in our lives as we have no idea how this new job is going to effect us as yet. Currently N is home by 6pm every evening but I suspect that from now on that will be rare which will make a difference to me in that my day becomes even longer when dealing with the children.  Still, they are being ever so good at the moment and a joy to be around so I am not concerned.

The past five weeks have seen a marked improvement in my UC.  It has never been more settled with me being completely ordinary and only going to the loo once a day! I can’t remember the last time that was and is has been very weird.  All of a sudden I literally have extra hours in my day that I don’t know what to do with, it was great.  You will note I am using past tense – yep, my total remission was short-lived 😦

A week ago I got a call from my GP to say that my regular blood tests had come back and weren’t good. They were as follows:

Sodium: 136

Potassium 4.6

Urea 9.3

Creatinin 114

eGFR 51

Basically, the problem is my kidneys as marked by the creatinin level.  By baseline level of creatinin prior to starting Cyclosporin in November 2006 was 88.  88 is the number they measure against and if it goes above this it is bad.  It has got as high as 91 before but that is nothing to be concerned about but 114 is bad and means my kidneys are  starting to struggle.  I was told to stop taking the Cyclosoring immediately, which I obviously did.

Within four days I started bleeding again and am getting progressively worse each day.  I am due to have my second infusion of Infliximab tomorrow afternoon but they don’t hold out much hope of it doing anything for me if I am not on the Cyclosporin as my body will start to build antibodies against the Inflximab very quickly without it.  They re ran my bloods last week and I am waiting to hear the results. If they are not good still then things don’t look too great for my future unless my body decides to give me a break and only flare up a little.

Meantime I am not dwelling on it.  I am crossing bridges as I get to them and meanwhile jusy carrying on as normal.

Anyway, my little’en is alseep in the car and needs checking on.

I shall write again soon.

et cetera