So my last post left you on such a high note: my hubby’s first dose (the test dose) was a massive hit,
as if our lives were enviably now beginning to move on to another platform. As a recap, the Wave Clinical Trial works by the patient having a first dose then it’s an 8 week wait before you start the 3 single doses of the ‘stuff'. Now the trial is double blind which means that neither doctor or patient know if the injected gene silencer is indeed that or a non drug!
I was rather astounded at the effects of the first dose and noted that after about 6 weeks my dear hubby had appeared to return back to pre-first dose state. As you can imagine having a glimpse of my husband back was like an intoxicating bubble. I never wanted it to burst.
So as September peered around the corner, the anticipation of x 3 doses to be given over a 12 week
period a month apart filled us with hope.
September came and then October 2 doses in and then nothing!! Not a thing happened. My husband’s tiredness seems to be ongoing, his thought processes are still very much impacted resulting in him being unable to generate conversation or to express his thoughts as well as he used to. It feels like we are back to where we were! General consensus is friends and family feel his speech is clearer and there are some days when he isn’t so tired as others. As it's a clinical trial there is no guide stick to tell you if this will be a cumulative effect, or if the reduction of the mutant protein will take a while to build up, or if indeed we would see a result straight away. So if you ask me is he on the stuff or the placebo I still really don’t know at all! Was the first dose the actual real stuff to check he had no reaction? Was it a placebo effect? Is he now on the 2nd, 3rd and
4th dose of a placebo? Is he on the real stuff and it’s not working?? Or is the stuff maintaining his current level and he’s not deteriorating??
The answer is I just don’t know. The trial is due to end in February officially and his last dose is this month in November, followed by 4 weeks later an MRI and x 2 follow ups in January and February just a clinic appointment and the last one a phone consultation. Results of the trial take I think about a year to be published.
I can only jump to the conclusion at this point the clinical trial 1st round (we are on round 2) must have been successful as they have now collated clinical evidence that the higher doses of ‘the stuff’ have resulted in less harmful huntingtin protein being produced showing early evidence that this is having a good impact on clinical symptoms/progression as they are entering phase 3. To what degree it works, I don’t know and for clinical researchers I guess they don’t know either as it would be too early to tell I’m guessing!
If you ask me today whether I feel he is on the placebo or the real stuff I'd say the placebo! In March next year as a participant of this Wave Clinical trial my husband will be allowed to have the real ‘stuff’ as a monthly off label drug via monthly lumbar punctures and therein lies the hope of our future. So I guess what I am saying is there is definitely hope out there for a better future for those with HD and plan to even give the stuff pre-symptoms to prevent even early onset. It certainly is the lifeline all HD patients and families have been praying for.
So from me watch this space... the future as always is racked with uncertainty and ever-changing symptoms which throw us massive curve balls but maybe there is a rainbow coming after all that rain.
This post is dedicated to my husband the bravest man I know whose motivation is to ensure nobody else has to live through this, and to ensure that if his brother does have this dicky gene there will be a cure for him to live a HD free life.
