Synexus Clinic

[Janzo54]

I have been accepted at the Synexus clinic on 3rd March where I live in Reading, Berks. Its to chat about joining and being part of their study on medications and COPD. They are one if the largest clinical trial organisations in the world. I get reimbursements on any reasonable travel expenses and potentially gain access to new treatments not available to the public.

They contact your GP and keep them informed.

Just wondering has anyone else joined anything like this?

I can share outcomes if anyone interested?

Janzo

[sassy59]

Sounds very interesting Janzo54 and I personally would like to hear how you get on. Good luck xxxx

[Janzo54 in reply to sassy59]

Hi Sassy,

Yes ok! It will be interesting! Will feed back what i can. X

[HampshireLass]

I got invited for this study but decided not to, as I had a bad time last year when I was changed from Sirdupla and Spireva to a new medication called Trimbow (NHS cost saving), which left me feeling poorly for several months. This study would obviously involve changing medications again which I was not prepared to do. Previously I have been to Synexus clinic on an Osteoporosis study. They actually diagnosed this disease (I didn't know I had it) and I was attending and receiving medication for 5 years. They suddenly stopped this study and demanded the medication was returned to them and kept contacting until it was. They told me they would inform my GP of my condition which they never did even when my GP wrote to them. I am grateful that they discovered I had something which I did not know I had but I have no confidence in them to take part in this latest study. Obviously you will make your own mind up whether to join the study.

[Janzo54 in reply to HampshireLass]

Oh really! Oh no thats not a nice experience for you! My neighbour told me recently she was on a study for Osteoporosis for 5yrs but she didnt know if she was on a drug or placebo-which was worrying.

This first meeting is to meet me and gather information then i can decide if i want to continue or not.

I dont really want to change my meds they said i try something whilst im there and see if symptoms improve. Im coughing so much and had hoped to try something new but if it messes me up they say i can discontinue at any time.

I will find out more next week but keep an open mind along with a firm resolve to keep to my own boundaries.

Thanks for sharing your story-it helps x

[RoadRunner44]

Hi, I'd certainly like to know how you get on. Chrys.

[Janzo54 in reply to RoadRunner44]

Yeah ok pleased to help with feed back

[Kristicats]

Well done for volunteering! There are none near enough for me to join. I’ve heard Synexus clinics use add on treatments so if you wish you could continue with your current regime? Also do thorough health checks on their

Volunteers.

Please let us know how you get on. Thank you Cx

[Janzo54]

Yes they do and there are a professional set up with doctors and specialists-I think it all sounds positive and it could help others too which is a big plus.

I will keep posting as and when I progress through the journey!

Happy to help. X

[Jaybird19]

I am sure that many of us will want to know about your experience please.

[Janzo54]

ok! Yes happy to post what I can

[Piper21]

Would definitely be interested in your journey. I must confess I’d also thought of applying as I also live in Reading...but chickened out 😩. I hope it goes really well for you and I look forward to your posts in the coming weeks

[Janzo54 in reply to Piper21]

Hi Piper!

Did you?!! Im not sure why I did it but I felt like seeing if there is other meds out there so its an adventure and i have a bit of free time at the moment as getting other health things sorted.

If you ever fancy meeting up for a coffee sometime ( is this permitted off site) as Im Woodley Reading. I have one other girl friend whom I see occasionally and shes got severe COPD and also interested in the study.

Meanwhile very happy to post as and when.

Its starts next week.

Janzo 🤞

[Piper21]

Well I will be thinking of you and waiting for your updates with bated breath.😀. I really hope it will be an adventure that is beneficial for you. As it turns out , if you start next week I wouldn’t have been able to do it as I’m out of the country till end of March. As for coffee I’m in the Purley area so I’m sure we could arrange somewhere in between at some point. Good luck next week

[Janzo54]

Thank you!

Purley is that near Tilehurst?

Yep thats next stop off the M4 from me.

Well, im keeping an open mind so just have to wait and see I guess!

Happy to post on here no problems.

Hope yr travels take you away from Corina Virus!

[Piper21]

Yes Purley / Tilehurst , must admit not looking forward to the return plane journey with this corona virus floating about, I never feel great when I get off planes, always find I’m more breathless...whether it’s anything to do with the oxygen levels on the plane or not I don’t know.

[Janzo54]

Yeah could be cabin pressure.

Theres great tips on here recently about protecting ourselves in public placed so this is all we can do-good luck!

[Piper21]

Good luck tomorrow Janzo

[Janzo54 in reply to Piper21]

Thanks Piper!

I had a phone call from a nurse from there this morning just asking what inhalers i was on and how long i had COPD but all good to go in the morning 👍