Experience with clinical trials?

merri

Have been passed on to clinical trial department as have so far tried:

Steroid injections
Diclofenac
Methatrexate tablets
Methatrexate injections
Hydrochloxaquinine

for my RA, pain meds are Tramadol, Cocodamol, BuTrans patch, Gabapentin and Amitriptyline plus others.

They have said that if the clinical trial dept can't help, they will pass me on to the biological dept? and they will take me through the pathway for funding.

My ESR and CRP just keep on rising and I'm getting worse. My CRP is currently at 44, ESR 51 so this is the next step.

Has anyone else had experience of either clinical trials or the biological route?

maria09

Hi
No I never have but would love to have a go
Maria

trepolpen

hi merri

those drugs are pretty standard for RA , been on methotrexate over 15 years & on my second anti-tnf now

your CRP & ESR is very high & think you would benefit from going on one of the biologics

dreamdaisy

Hello merri, many of us are on the biologicals (with varying success rates) and they are the next natural step after meth. I had to try sulph, meth, leflunomide and cyclosporin before I was able to try the anti TNFs but I am aware that they are more flexible in allowing these meds sooner. Your rheumatologist will be the one to sort out the funding, you won't need to worry about that. I have not done a clinical trial but many years ago I took part in the research for the development of a nasal spray to relieve hayfever. It wasn't fun. I wish you well. DD

suzygirl

I haven't personally but an on line friend has, and she had remarkable success. She got the 'real' drug and it worked, unfortunately the trial has ended and she is trying to get it again through compassionate grounds.

I have SLE amongst other things and I would give a trial a go as it can be a very nasty disease and it needs progress made. However it is a very individual decision and you could get side effects.

I wish you well, whatever you decide.

Kittkat

I've never been on a trial but I definitely would good luck if you do

merri

Thanks all My body's been stubborn and refuses to respond to any treatment so here we are My Rheumy nurse has been expecting this, so has been preparing my file but I just hope that there's something suitable and I'm eligible.

fingers most firmly crossed.

dreamdaisy

My rheumatologist once described me as 'treatment-resistant' - dammit, she's right. I hope you will find something that can help. DD

trepolpen

in the UK they use The DAS28 score to workout if you qualify for biologics , with your CRP & ESR being high dont think they will have any problems

sounds like they are trying to get funding for you to go on one of the anti-tnf's

salamander

I wouldn't go on a clinical trial except as a last resort. Certainly not before trying biologics. I wish you the best though and hope they find something that works for you.

stickywicket

No experience, merri, but I hope it goes well for you.

merri

trepolpen - they have been monitoring my disease activity score for a while to make sure that I would be eligible so here's hoping

salamander - thank you for your viewpoint

Thanks for all of the replies

merri

Salamander - would you mind giving your viewpoint as to why you would go for the biologics first?

stickywicket

I can't give you Salamander's viewpoint but I do share it. You've actually only had two DMARDS (meth and hydroxy). I'd want to try the others first, then the anti-tnfs before clinical trials. You might get lucky, and I guess there's a lot of luck involved in which DMARDS and anti-tnfs work for who anyway, but, even so, I'd prefer the tried and tested route.

merri

Thanks for your point of view I think from the Rheumatology point of view it's not been under control for nearly 4 years now, and they're wanting to try more aggressive treatments.

salamander

merri wrote:

Salamander - would you mind giving your viewpoint as to why you would go for the biologics first?

Hi Merri, I don't want to be negative but I am currently experiencing a side effect from one of my drugs that is a known side effect but a rare one, I believe. It has made me wary and I'm not sure I would want to go for a drug that hasn't been around for quite a while.

Ironically, the drug I've had problems with is a biologic but, because it has been in use for some time, the side effect was immediately recognised by my rheumy team and I was taken off it and, hopefully, no more damage done. I know you will be very carefully monitored if you go for a clinical trial but I wouldn't want to take that risk. That's all. I can completely understand why people would go for it though.

phoenixoxo

Hi merri,

Yes, I have experience of the biological route, having been fast-tracked onto it by a previous consultant in 2006, despite having tried only two DMARDs. I don't recall the reasoning for this, sorry :?

I haven't had success with anti-TNFs, though for some they work wonders! Recently my current consultant has agreed to my returning to DMARDs, to try injectable methotrexate, but if he hadn't been open to my suggestion I would've raised the topic of clinical trials. It surprises me that biological treatment isn't the next step for you, but I'm often surprised by things

Just as suzygirl says, hope it goes well, whatever you decide. And if you have time and inclination, it'd be great if you could keep us updated. (I'm often nosy too :oops: )

Best wishes,
Phee

Toots

I have no knowledge or experience lol, just wanted to wish you well x

merri

Update - the clinical trial team called today. My appointment is on Tuesday for initial blood tests, x ray and doctor assessment. If all goes well, they will put me into the group which has 2 anti TNF drugs and one infusion anti TNF.

Thanks all for the replies

phoenixoxo

Hi merri,

Sorry I've only just got round to responding to this – I've had a bit of a flare-up and I've had to rest my fingers more than usual! Many thanks for the update and I'd be interested to learn how you got on at your appointment, if you can spare the time to post

Best wishes,
Phee

bubbadog

Wow the Clinical Trail team didn't take long in getting back to you! So you know which team you will be on, so Tuesday it's the initial tests to make sure you are OK to start testing meds. Hope everything goes well on Tuesday and your OK to starting testing the meds.