G-CSF Drug Trial for FA at Bristol Hospital

[Tiggywinkles]

I am currently 2 weeks into the 3 week trial for the drug, G-CSF, at Southmead Hospital in Bristol and am doing a call-out to anyone who may be able to take part as they are still looking for a couple more participants. It is only a short, initial trial of 7 people but could lead to something bigger if it proves successful. It does involve being available for 6 days in the first week and then 2 in the second and 2 more in the third, so you have to be able to get to Bristol quite easily but the actual treatment is very short and not painful. (injections of the drug in the first week, then blood tests in the following weeks) This is a chance to help with vital research, so please do think about it if you can. If you have any questions please ask me or anyone who is interested, please contact Dr. Alistair Wilkins for more details. His email is [e-mail]

[murcia]

I’ve been asked to do this, thinking about it, have you had any side effects.

[Tiggywinkles in reply to murcia]

Morning, Thanks for your question. I have had no side effects from taking part in the trial. The actual drug injections over the first 5 days take minutes to have and then it is just a series of blood tests over the next 2 weeks - 3 weeks in total. I have just one more blood test to have this coming Friday then wait and see if it goes further after this pilot trial. I would encourage you to talk with Dr. Wilkins about the trial, it is the first part of what may prove to be a treatment for FA. Let me know if you do decide to take part or have any further questions.

[murcia]

Afternoon

Have spoke to Dr Wilkins I’m starting trial in October as there is no slots left now.

Do you live in Bristol?

[Tiggywinkles in reply to murcia]

That's great news! I am glad that you have decided to take part. I shall be seeing Dr. Wilkins for my final blood test tomorrow. No, I don't live in or even near Bristol!! I live in North Devon and by the end of the trial will have travelled over 1300 miles. My partner and I stayed in Bristol during the first week as it was daily visits, but the 2nd 2 weeks have been day trips, the driving being shared by him and a very good friend. Hope all goes well in October, let me know how you get on. Heather

[murcia in reply to Tiggywinkles]

Gosh you’ve done some miles, fortunately I live in Bristol,will have to rely on my husband to drive me backwards & forwards as don’t drive now.

Pat

[Tiggywinkles in reply to murcia]

I have, but I so wanted to be part of the trial it will have been worth it, particularly if it proves to work and goes further into a bigger trial and then maybe a treatment. I do still drive, but only short distances as I get too tired. I am still walking, although using a rollator. My whole development of FA is different to most as I had no symptoms until I was in my mid 40's, so now about 10 years on from then. I hope this may prove to help all people with FA now and in the future. Keep me posted on how you get on.

Heather

[murcia in reply to Tiggywinkles]

Ive had F/A since my early 20s was able to walk until 8 years ago,now a fulltime Wheelchair user, my sister also has it.

Will let you know how I get on

How are coping in this heat, wears me out.

[Tiggywinkles in reply to murcia]

Hello Pat,

Had my last visit to Southmead on Friday, which went well. Asked questions about what may happen next and got positive feedback from both Dr. Wilkins and Dr. Kemp, who is the researcher.

How is your sister? I have an older sister who has not got FA. Although she has not had any genetic tests done as she didn't want to.

The heat is not good for me either. It makes me feel exhausted before I've even done anything. Mind you, over the weekend we have had lots of rain and it has cooled down considerably.

Hope all goes well when you take part in the trial, do keep me posted.

Heather

[murcia in reply to Tiggywinkles]

Hì Heather how are you ?had email from

Dr Wilkins about trial we done.

The results are promising, i know a long way to go, but a good start.

Pat x