Where was i?
Yes well, as i said, i didn't feel anything after the first injection and tablets but the next morning i did feel a bit chilly like i was coming down with a little cold or something. It certainly didn't stop me doing my normal everyday stuff.
And as time went on it didn't get any worse apart from maybe having a runny nose some of the time, especially when out cycling in the evening, but it was cold out! And at bedtime too it would run also.
I'd say that after about a month or two it stopped completely, and the cold like symptoms too. During this time also i did loose my appetite. I remember that before i started treatment my doctor said i might not feel like eating much and it was ok to go and eat Macdonalds or KFC just to get the calories etc. And i did for a while until i got my appetite back again. My weight has been almost the same since i started. I do eat quite well i think. Plenty of fruit and chicken. Multi-vitamins too.
I don't smoke or drink alcohol. More about smoking and drinking another time.
So as the treatment went on, going to my Haemophilia center every 2 weeks for blood tests to see that the treatment isn't causing anything bad to happen, i did develop some other possible side effects that may be worthy of note. These next ones all happened from about the 2nd week through to about the 2nd month. Firstly i noticed a kind of tiny lump under the surface of my bottom lip. I couldn't see it but could feel it with my tongue. It wasn't uncomfortable in the slightest, but i had never had one before. I left it and as time went on it got a bit bigger and also became visible to the eye and looked like a tiny little water blister. I found that i could pop it and drain the fluid and then over time it would gradually fill up again. I didn't tell any of my doctors because i just didn't feel the need. Of course i would of if it had been painful or increased in numbers. Fortunately i seemed to forget about it and it eventually disappeared.
The next possibly side effect, (i say possible simply because they could also be from having HIV and maybe the extra stress i may have been experiencing) was a series of mouth ulcers mainly on my tongue. These were very painful indeed and can really get on your tits. I wasn't too worried about why i had them but i did need to treat them. Bongela is ok for small periods of time and small ulcers etc, but i really needed to treat these. I have had really bad mouth ulcers in the past, years ago and remember being prescribed a drug called Thalidomide. You may of heard of it. It has quite a controversial history but someone found out that it treats mouth ulcers very well indeed. It got rid of them then and also this time too! It takes a couple of hours filling in forms and doctors making phone calls to authorize it's use but is worth it in the end. My ulcers went away and haven't come back.
Another difference i noticed during treatment was i had a pain develop under one or the other of my arm pits and was concerned that it could be my lymph nodes or glands. But i couldn't feel any lumps and my temp was fine. It was just painful. I also thought it could be a bleed from having Haemophilia and going to the gym and lifting weights on the shoulder press or something. I went to the Haemophilia Center and they weren't worried and agreed that it was probably a bleed. I cut down on the weights and evetually stopped going to the gym altogether and as the weather was getting better i would just go cycling instead which i had been doing almost every other day since around October 04 anyway and some light weights at home.
Anyway, the pain went away and all was fine again.
Also that might be of some interest, early on i did feel alittle more emotional at times and would even shed a tear whilst watching things like David Attenboroughs 'Planet Earth', and people reading this who know me will be quite suprised. And at times i would feel more moody than normal and want to shout and have a go at someone.
I can't think of anything else really, except for about a month at the beginning i had itchy and dry knuckles and just put E-45 on them and they were fine and went away, so i would say that my overall experience up to now has been quite tolerable. I feel just the same as i did before starting treatment. My hair hasn't gone anywhere as far as i can see. Unlike when i was on a drug called Indinavir for HIV. I had some really nasty side effects on that drug, i will go into that another time maybe. And i am sleeping well despite some very strange dreams, but thats fine, i like strange!
Jason
Thursday, August 31, 2006
Wednesday, August 30, 2006
A little bit more about me
Hello again,
I am getting used to this i think. Blogging that is. I have absolutey no idea if many or any people will read this. Maybe it doesn't matter really at the end of the day. As long as i am getting this down at all is the main thing, then at least it is 'out there'.
Well, right now in my life i am halfway through a journey, albeit a short one, of 48 weeks of Interferon & Ribavirin treatment. My next injection, my 28th, is tomorrow at 23:30pm as it has been every Thursday since February.
Lets go back a bit. but don't worry, i will bring you right up to date in due course.
I have had Hep 'C' since i was a small child. Sometime during the 70's i was injected with some bad blood during treatment for my Haemophilia.
I didn't know i had Hep C until the mid 90's when i was told by my doctors. For some reason i was more concerned about having Hep C than having HIV. Obviously when i was first told i had HIV i thought it was the end of the world and wouldn't even see the next Christmas! But gradually i have learnt to live with HIV and more recently Hep C. But For a long time, whilst i could almost forget about the HIV i could not do the same for the Hep C! I was managing my HIV very well for the most part and still am but always in the back of my mind was what my liver was doing, how big it was getting and when will it turn nasty!!
And all this time i was doing absolutely nothing at all to treat it. I was probably making it worse with all the meds i take for my HIV. But i just kept it there in the back of my mind and tried to ignore it but it would always come back. I had been told about Interferon at my hospital and maybe i should think about starting it in the future. But again i just swept it away. But early this year was told by the same doctors that i should really consider starting treatment and now is the time to start!
So i did!
I had read nothing on Hep C and treatments available. I was given information in the past all about it but just chucked it away without even looking at the front cover! But now i had to start treatment i was looking up all that information again on the internet and reading up on possible side effects etc. I was still worried about starting but had nothing to loose. Infact it was probably the best time to start since i had been going to the gym nearly every day for nearly 1 year keeping fit and mountain biking too in between. So i started my treatment of Pegylated Interferon Alpha-2A 180 micrograms in a syringe once per week and Ribavirin 200mg x3 twice per day and a tiny little Folic acid tablet once per day.
My fist injection was done up at my Haemophilia center in London, i did it myself in front of the nurse just so they could see that i could do it. It happened to be the easiest injection i have ever had. I felt nothing! It just slid right into my side in the fold of flesh i had squeezed together. Infact every injection since that first one has been the same. I do keep changing from side to side every week incase of bruising since i have severe Haemophilia too.
As soon as i took the fisrt dose i was waiting for something to happen, but obviously it was far too soon to expect any side effects. Bearing in mind i started 6 months ago i will try to remember what kind of a time i have had during treatment. But for now i will finish because it is getting late and i have been mountain biking all afternoon, but i will be back tomorrow to continue.
Jason
(C) JPT 2006
I am getting used to this i think. Blogging that is. I have absolutey no idea if many or any people will read this. Maybe it doesn't matter really at the end of the day. As long as i am getting this down at all is the main thing, then at least it is 'out there'.
Well, right now in my life i am halfway through a journey, albeit a short one, of 48 weeks of Interferon & Ribavirin treatment. My next injection, my 28th, is tomorrow at 23:30pm as it has been every Thursday since February.
Lets go back a bit. but don't worry, i will bring you right up to date in due course.
I have had Hep 'C' since i was a small child. Sometime during the 70's i was injected with some bad blood during treatment for my Haemophilia.
I didn't know i had Hep C until the mid 90's when i was told by my doctors. For some reason i was more concerned about having Hep C than having HIV. Obviously when i was first told i had HIV i thought it was the end of the world and wouldn't even see the next Christmas! But gradually i have learnt to live with HIV and more recently Hep C. But For a long time, whilst i could almost forget about the HIV i could not do the same for the Hep C! I was managing my HIV very well for the most part and still am but always in the back of my mind was what my liver was doing, how big it was getting and when will it turn nasty!!
And all this time i was doing absolutely nothing at all to treat it. I was probably making it worse with all the meds i take for my HIV. But i just kept it there in the back of my mind and tried to ignore it but it would always come back. I had been told about Interferon at my hospital and maybe i should think about starting it in the future. But again i just swept it away. But early this year was told by the same doctors that i should really consider starting treatment and now is the time to start!
So i did!
I had read nothing on Hep C and treatments available. I was given information in the past all about it but just chucked it away without even looking at the front cover! But now i had to start treatment i was looking up all that information again on the internet and reading up on possible side effects etc. I was still worried about starting but had nothing to loose. Infact it was probably the best time to start since i had been going to the gym nearly every day for nearly 1 year keeping fit and mountain biking too in between. So i started my treatment of Pegylated Interferon Alpha-2A 180 micrograms in a syringe once per week and Ribavirin 200mg x3 twice per day and a tiny little Folic acid tablet once per day.
My fist injection was done up at my Haemophilia center in London, i did it myself in front of the nurse just so they could see that i could do it. It happened to be the easiest injection i have ever had. I felt nothing! It just slid right into my side in the fold of flesh i had squeezed together. Infact every injection since that first one has been the same. I do keep changing from side to side every week incase of bruising since i have severe Haemophilia too.
As soon as i took the fisrt dose i was waiting for something to happen, but obviously it was far too soon to expect any side effects. Bearing in mind i started 6 months ago i will try to remember what kind of a time i have had during treatment. But for now i will finish because it is getting late and i have been mountain biking all afternoon, but i will be back tomorrow to continue.
Jason
(C) JPT 2006
The Mighty 'C'
Me on the first day of my BlogHi everyone,
I am very new to all this blogging and normally I have absolutely hated keeping diaries in the past, but I really do think that I am in a very important position to share my experiences of Hep 'C', HIV & severe Haemophilia 'A' and also anything in between too.
My name is Jason and have been HIV positive since 1985, Hep 'C' mid 70's and I am 35 years old.
I have already been on Interferon & Ribavirin since 23rd Feb 06.
In my next post I will introduce my self a bit more and kind of give you a run down of events since I started Interferon.
I hope you find my blog an interesting and maybe helpful place to visit in the future and feel free to post comments etc
Jason
(C) JPT 2006
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