I posted yesterday about my pressures when I returned home from my penultimate trial date.
Of course it raised interest as I expected it to do that. At that time I could not share any more details of the trial drug with you for reasons I will give below. I do hope that it will explain little more and to stop a particular person from believing that those that trial and do not share too much are not very nice . There are valid reasons behind why they do not share.
I have trialled many many times, sometimes being on two at one time and on each and every paper I sign the forms that say these trials come with risks, side effects and even death. Yet these people continue to trial for the same reason I do, we know too well the devastation of ph, this unseen disease, we need a cure not only for ourselves and our fellow ph brothers and sisters but for the ones that come afterwards. We long for the day a person suffering with this is told that there is a drug that will CURE them. This is why we trial. I do wonder if the person knocking the ones that do not share has actually trialled. I ask because if she has done she should know there are strict rules put in place by the Pharmaceutical companies about sharing information until we are told. If we do so we risk not being allowed to trial again. Lots of money is invested in each trial, how would it be if a rival company took hold of the trial and made their own drug, remember it takes years for each trial to come to fruition. There are loads of reasons why we are not allowed to say too much which is why I only said how my pressures had dropped. Now however I have permission to share as I have spoken to the main man concerning this drug, a guy I have huge respect for and would not wish to go against him in this. You would have seen me write about him before and our regard for him, his name is Alex Rothman. Yes this is a Sheffield Doctor of cardio thoracic and this isis own baby. .
What we all need to remember is that
a} I do not know which dose I was on or even if I was on the placebo, though both myself and my doctor believe it is too much to expect my pressures to have dropped like that, after all I have been on the same meds for 12 years so why suddenly drop in the last eight months since taking the drug if not the drug responsible..
b} We need to remember that I am the first person on this drug to have come so far. There are only another two on the drug and they are not as far on in the trial as I am so they may well not have the same result as I do, who knows in this trial -way too early to tell.
c} If I wish to continue to trial and I certainly do then it is up to me to share only that which I am allowed to, nothing else. I never wish to be taken off a trial or be told I am not responsible enough to take part. This goes for anyone trialling so please respect them, do not knock them for not telling you the ins an outs. Remember they are doing this to benefit us all.
d} Trials are NOT easy. Much time is taken up with hospital visits, numerous tests which lots of people find scary and invasive, right heart caths for instance have seemed to me to be a constant though I know not all trials require these so check them out first. The side effects may sometimes be bad but always discuss again with doctors if this is the case. They do not wish us to suffer from doing these trials, our health and well-being is always at the forefront of their minds when working with us. Remember it is a team effort. There are generally studies around if you wish to take part in one of those. I have been on two for many years.
Who knows if this drug is the game changer we have been waiting for, all we can do is hope, pray and wait. I still expect many ups and downs, life is a roller coaster with ph and for no reason we can suddenly change for the better or the worse. This along with my systemic scleroderma makes life a balancing act of making the most of the ups and just getting on with the downs as best we can.
This trial for me has been very interesting as through it all I battled covid where I tested positive for 20 days, no fun when you are immunosuppressed , and then RSV which after a three week hospital stay I was still recovering from up to two months later, one would have thought my lungs would have called it a day and worsened so I believe as does my doctor that this drug is responsible.
Now I can tell you that the link to the drug is:-
LTP001
https://clinicaltrials.gov/ct2/show/NCT05135000
I do hope you find this of interest. Now for the money shot. Whilst we KNOW pharmaceutical companies make a lot of money out of drugs we all know that before they reach them the work needs to be done to get it to that stage. This is where our specialists teams, our researchers etc come in and actually work to get a drug they believe works for us. Remember this work is not funded at this stage which is why we need money. The following paragraph relates to Colin and it will be the end of the link to Just Giving. We shall then close it down.
Must share with you all, though i suspect a few of you have seen this amazing poem received today from our own Tess Jewson. Colin was washing the motor home when I read it to him and tried to hide his tears cos of the water but the truth was he did shed a tear or two. We were overwhelmed. This lady has quite a talent methinks.
Colin is happily back at home and is getting on with all outside jobs such as edging, not for me to wield those huge electric shears and washing the motor home, blowing all the paths and garden etc. So far he has not gone into any detail of his next adventure though I did overhear him telling Alex my doctor who led my trial he is considering Ireland. Watch this space.
Below is a video - very short - of him coming through the gates at Leeds station where I collected him from after his epic fundraising ride. He tells you all thank you for donations etc.
Link to `Colin's Just Giving Page: -
At the hospital yesterday he said he felt like a media star as it was already known he had completed the challenge and they were so impressed with him - I was too.
So after reading about trials which are so important to us if you wish to donate ( I know many of you have for which a huge thank you ) please feel free to do so.
If you are interested in trialling drugs for ph then ask your specialist who may well be able to put you on one he deems suitable. Remember not everyone can trial, there are some trials which your specialist would deem you unfit for so do not be disheartened but just remember we are grateful to all who at least try and in he meantime there are those who do, all we ask is you not to disrespect us for not telling all you feel we can.
Now I must walk and then return home to clean out a couple of cupboards as I have bought new glass double walled mugs but need to make way for them! It will be odd walking without the watch and phone that I had to keep with me 24/7.
Wishing you all the best day and sending big hugs.
Warm love
Carole xxx
