The Numbness Continues...

My hand & My numb little finger

The numbness in my little finger on my left hand is still very much there. I have had it a while now (since Aug 25th) whilst on Hep C treatment. It seems to feel much more obvious in the evenings (the evening time is when I experience my side effects from my HIV drugs). I have had my HIV sides for several years. My finger is numb all the time. It is worse just after i take my evening HIV & Hep C pills, it usually lasts until i fall asleep which is always around 3am. I thought it could be something to do with my bike riding. But i am not so convinced! Yes; the fact that i have been cycling every other day during my Interferon & Ribavirin treatment could have contributed to the numbness, & yes; the fact that my right arm has pretty much had it where strength is concerned, rendering my normal left arm with twice the work it deserves, i have this to say; I have been cycling this way for some time now over the years, and most importantly i was doing so the whole winter leading up to treatment in Feb this year & the whole Summer before that too! I can honestly say i have never experienced this numbness before! And my arm has been this way for years also. I am therefore almost certain that the numbness is mainly, if not wholly a side effect of my Hep C treatment!
My Doctors have said; It is almost certainly numb as a direct result from my mountain biking & to not to exert my self!
I have said; Bollocks more like;)
I'm not complaining though. I just think i know my body & my limits more than anyone else! Plus, it is just a numb finger. It could be so much worse!

Jason

Numb finger & other side effects

Yes, i still have a numb finger. Well, when i say numb, i don't mean totally numb. I can still feel it if i stroke it or put it under the cold or hot tap, or pinch it. It is only the one finger at the moment and i expect it may go to the others in time.
My next hospital visit is on the 15th September. I will wait until then i think, unless it starts to hurt or go totally numb!
I don't think i have mentioned before that i also get mild side effects from my current HIV drugs. I have been on some sort of HIV medication since 1987 (yes, i wasn't even told for 3 years!). Firstly i was on the Concorde Trial for AZT and then another trial where the name of the drug has escaped me for now. But really, since i first started HIV treatment my side effects have been very mild, almost unnoticeable. That is to say until i started a drug called Indinavir!! It was a very potent drug for me for some reason or another. I can't remember how long i took it for but i think maybe for a year and a half. I remember going to Tunisia for a 'Star Wars' location finding holiday whislt on the drug and i still can't look at the photos of me! During my time on Indinavir (circa 2000) my face changed shape (lipodistrophy), the hair on my head went very thin and light. I lost all the hair on my arms and legs. I got kidney stones and dry, itchy skin all over my body which wasn't very nice. But the worse thing that the drug caused was i had these tiny red bubble type things growing out from the sides of my nails on both my big toes, They got bigger and bigger and very painful! The doctors hadn't seen them before and even sent me to the hospital photographer to have them documented. I had 4 of them, each the size of a large kidney bean. And red in colour. I had to wear sandles for several months so my toes could stick out and not be touched by anything. Just thinking about it now makes me cringe! I had to wash them and re-bandage them every day. They kept bleeding and discharging some kind of fluid too. In the end the RFH decided to cut them off. So i had them cut away and half my nail too. But after a month they had grown back and were worse than they had been originally. So, in for another op and cut away again, this time all the nail too and this did the trick. My goodness, those things were horrible!! It was called 'Chronic Paronychia'. Obviously, by this time i had been taken off Indinavir and put onto something else.
I used to say to myself at the start of my Hep C treatment that if i coped with all that, i can cope with this. I think it has helped me a lot thinking that way.
The only side effects i get at the moment from my HIV drugs are a really odd feeling of being out of my body so to speak. I feel that if i cut my self or punched a wall really hard, well, i feel as if i wouldn't feel it!. It only happens in the evening a couple of hours after my evening drug gulp, which is and always has been at 20:27pm every day since about 1987. Some evenings are worse than others. It really seems to depend on what i have eaten. And if i am out mountain biking at the time i take them i don't hardly feel it at all. Maybe because my heart rate is increased? I am fine in the morning because i have a slightly different concoction, & i am lucky enough to be able to go back to sleep after my morning drug gulp at 08:27am for about 2 hours as i don't work.
I was out on my bike this afternoon, cycling around Leith Hill & Holmbury Hill on the North Downs. It was very quiet and it sometimes get a little lonely all on your own. But i do come across other mountain bikers during the day. I even fixed a puncture for a fellow MTB'er whom was pushing his bike down a very steep track. My good deed for the day:) I needed the rest anyway. Oh, and at the top of Leith Hill, i had a slice of date & marmalade cake that my mum made me. Lovely!

Jason

1st to 27th injection quick summary...(Side effects and general well being)

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