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Hi everyone hope you’re all feeling good,
Back from our hols last Wednesday. Will see the Professor in the morning.
Keeping my fingers crossed that he will take me on for the trials, and can you imagine going into remission for four months at a time? I must ask though where the BIP comes from. 🙄 😳
Will let you know after my appointment.Love to you all,
Rosemary xxxxGood luck, Rosemary. I’m excited for you!
Take care,
TrudiLyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
all the best Rosey – hope you are feeling good from the holiday and excited about this next step
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Rosey 😀
What a fab few weeks you are having – holidays and hopefully remission – I am so happy to hear your positive news. Sending very best wishes and love your way.
Patricia x
Well to be honest I saw the Professor he examined me and told me about the trials.
He also said one in four would have a placebo. I then had to see another doctor to explain more.
It turns out I would take part in the first phase. I would be one of eight others and the doctor said we don’t know what will happen as its only be tested on rats before. I asked what the side affects could be, he said we don’t know, I said could I die? He said we don’t know.
Well you know I’ve gone all these years frightened of these dangerous drugs that’s available for us, and keeping things more natural apart from the unfortunate preds, and wanting to get well and not do harm. I hardly think I should risk dying.
I was really shocked as I thought it had already passed testing, I really thought that the professor wanted as many patients to get this treatment free while the funding was available. How silly am I.
Sorry I’m a coward and not a gambler.
Rosemary.
@Rosey UK wrote:
Sorry I’m a coward and not a gambler.
Rosey–
I think you are neither. You weighed your options and decided against it. Very smart of you. I don’t like being a guinea pig either!
Take care,
TrudiLyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Rosemary, so sorry that you had such a disappointing visit with “his eminence, ” as well, but agree with Trudi that you were wise to listen to your gut and courageous to act on your overall sense about things.
Early human trials of anything are usually preliminary “safety” trials with a small trial group, first to gauge whether a new drug is safe for human use and, secondarily, to gauge effects on disease process and whether further studies are warranted.
It’s going to be interesting to watch these early trials and to see what outcomes are published. Hopefully, it won’t be years away until this happens.
Well done going and checking it out! It’s good to know “his eminence” wasn’t trying to gloss over anything. 🙂
Thanks Trudy and Maz.
I asked the Professor where the BIP comes from. He said he’s made a copy of our own and mixes it with bugs or something and he ends up with loads of it.it then gets purified at a lab before it’s ready for use. I was told its like insulin which is also a copy.I am really disappointed, the idea I had and the idea they’ve got isn’t what I expected. It’s a good job there are people who will take the chance, or we’d never advance. Just not me I’m not strong enough.
Rosemary xx
Rosey,
Hi, on a flipant note, I would say beware Greeks bearing Gifts. I googled his eminence and he is Greek. When you posted that he had called you, alarm bells started ringing. If anything was that good I am sure you would have had to chase him a lot harder rather than him calling you. Regarding this protein, I thought the main team which discovered this and was the forerunner of this research was a Portugese team. Is this protein anyway connected to the protein in CMO and now used in Celedrin. Anyway I think you have made the right choice not to proceed, do you remember the poor souls who took part in a drug trial and ended up nearly dying, they ballooned up and were literally on fire, wasn’t that a potential drug for RA.
Oh Rosey – so sorry that this didn’t work out for you – but you are to be commended for being true to yourself. Having tried so hard to keep off the ‘heavy duty’ drugs it makes perfect sense that you did not continue any further. I think ablegirl has a point here about the phone call. I don’t know if you remember me mentioning to you that his eminence emailed me enquiring really if I was still interested in the trial – there seemed an immediacy about the email somehow – I just got the feeling he needed the numbers quickly – aswell as the fact that the guidelines for entering the trial were different from his eminence and the other Doctor who contacted me!! One said we had to have been on methotrexate and the other (his eminence) said chose not to take methotrexate. It didn’t add up to me at the time but now it makes sense because a lot of people, myself included, would not have entered the trial knowing it had only been tested previously on rats – so by saying ‘chose not to take methotrexate’ it opened the trial to more people. I think they will struggle for numbers. I for one am happy that you have not proceeded 🙂 but of course that is just my personal opinion. You are a strong ‘un Rosey not a coward. Take very great care….x
Yes I think you’re both right ablegirl and Patricia.
I wondered myself why a Professor would actually take time out to ring me, then email the information to me for we to pass on to my doctor to see.
You would have to stay three days two nights. My husband said can I stay with her because I have to help her. He said no your not allowed in and she’s not allowed out. The first visit back to the trial center will be three days after, then take place every week for the first 4 weeks, then 2 more at weeks 8 and 12 after the infusion date. They may perform an ultrasound of your hand joints at screening and weeks 4 and 12. You are given a single IV dose and that’s it. A lot of traveling involved and in the center of London.
I read more information on the Professor and apparently he’d invented a drug before but it didn’t work.Rosemary xx
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