PAD/CAD treatment

[Wheelee]

Hello everyone,

I'm new to this, from London , UK,38 years old, male with PAD symptoms pointing to a aortoiliac oclussion. Because my symptoms are considered mild ( does not stop me from walking any distance and improved with walking exercise) I will only see the vascular surgeon in September for Duplex scan, treadmill, and other tests to see where I stand.Pulses still palpable, warm feet but claudication sets in, with muscle burning and heaviness in legs ( less in buttocks and thighs after starting the exercise routine).

I would very much like in the mean time to start sharing some info and as much as possible get in touch with other people, in same situation and also to see if BHF has knowledge of this.

I would like to know if anyone else is aware of the new study on cyclodextrin in the treatment of atherosclerosis and the clinical trials for Trappsol Cyclo. I will post the link below for everyone to read. Trappsol Cyclo is the name for the cyclodextrin CTD Holdings in Alachua, FL produces and which is being used in the treatment of Niemann Pick Type C- the disease causes cholesterol to build up in the child’s developing brain and other organs. After reading the article and the study you can make the connection between cyclodextrin, NPc and atherosclerosis.

google.co.uk/amp/s/arstechn... s-cholesterol-reverses-heart-disease/%3famp=1

ncbi.nlm.nih.gov/pmc/articl...

npuk.org/ctd-holdings-initi... tudy-europe-trappsol-cyclo-treatment-trial-niemann-pick-disease-type-c/

Have a read, share your ideas and opinions and lets see if we can push for the use of cyclodextrin in "compassionate use", "named pacient" or similar programs for vascular disease same as Niemann Pick patients did.

I am not here to promote any product or company, I am here to try and do something constructive.

Best of wishes

[BHFnurse_Julie BHF Nurse]

Hello,

We read your post with interest here at BHF and discussed it amongst our medical team.

Clinical trials are needed to understand whether cyclodextrin treatment would be safe at the doses needed and any more effective than statin treatment. Patients with the rare and fatal Niemann-Pick disease are in desperate need of a treatment, and so there are beginning to be proper trials in these patients of safety and efficacy for cyclodextrin – which has to be infused intravenously or, in the case of the mouse experiments referred to, injected subcutaneously (under the skin) twice a week.

We will wait to hear the progress of these trials and comment further as/if/when evidence of effectiveness is proven in humans.

In the meantime we would stress that everyone take their usual medications for PAD/atherosclerosis as prescribed by their doctor.

Best wishes,

Julie

[VeganSelfExperiment in reply to BHFnurse_Julie]

Hi Julie and BHF,

It's been 7 years since you said you would comment. There have been many experiments with cyclodextrin on humans, animals, in vitro. What is BHF comment now?

Thank you and hope you are still around, or a human from BHF can answer.

[BHFnurse_Julie BHF Nurse in reply to VeganSelfExperiment]

Hello again - I do hope this post finds you well.

I forwarded your query as above to our Research department and here is their response:

We haven’t found any BHF-funded research looking specifically at that compound, but have found a few animal atherosclerosis studies using Cyclodextrin generally:

europepmc.org/article/MED/3...

They are using cholesterol-methyl-b-cyclodextrin to deplete cholesterol as a model of reduced atherosclerosis in mice.

Cyclodextrin as an atheroprotective is in animals only at this stage, and we have also found a few studies suggesting harmful effects:

pubmed.ncbi.nlm.nih.gov/344...

pubmed.ncbi.nlm.nih.gov/291...

There is some pre-clinical/ex-vivo human evidence that Cyclodextrin might help with atherosclerosis progression, but not much conclusive evidence from clinical trials. This small trial shows a slight reduction in small LDL from 12-14 weeks of Cyclodextrin :

clinicaltrials.gov/study/NC...

So, in conclusion, there still is an evidence gap in terms of human data supporting any beneficial effect for atherosclerosis, and a need for randomised controlled trials before anyone should be advised to take it as a supplement.

All the evidence the below company give in support of their product is also in mice and there is even one study where they just placed the compound onto a person’s plaque biopsy, so definitely far off the type of evidence we’d use to advise actual people.

Home (remchol.com)

I do hope this information is useful and very best wishes to all.

Julie