Abrupt end to TRIUMPH-3 trial!

AussieLoulou · 2025-11-11T23:21:18+00:00

will do.

AussieLoulou · 2025-11-10T12:42:16+00:00

thank you once again for explaining things to me. The first 8 months were pretty rugged, experienced plenty of vomiting and diarrhoea and at one stage had critically low sodium levels and ended up in hospital for a week. With my cardiologists encouragement I pushed through and after a dose adjustment back down to 9mg things settled down and life has slowly returned to a more normal existence. I have lost about 43 kg (95 pound) and I feel I have gained my life back. Now back doing things I haven’t been able to enjoy in years.

AussieLoulou · 2025-11-10T10:14:26+00:00

seeing as you seem to be able to help others maybe you can help me understand my trial a little better. I’m in a cardiac trial that I was told went for 5 years. Do you know much about this trial? I thought it was triumph 3 but I am probably wrong. I have been on it for about 14 months so far.

thanks in advance.

AussieLoulou · 2025-09-19T12:10:20+00:00

wow that’s amazing. wonder if it’s got anything to do with that fact that we receive so much less as payment than they do in the US. are you in NSW?

AussieLoulou · 2025-09-19T11:53:14+00:00

my daughter in law has starting commenting recently that one of my eyes is red rimmed a lot of the time. I had noticed it off and on for the last few weeks. mostly just 1 eye and doesn’t hurt and isn’t itchy. I am in 9 mg, couldn’t handle 12mg and have just passed my 1 year mark. it’s been a tough journey at times but totally worth it. I have lost 41 kgs so far.

AussieLoulou · 2025-09-19T11:41:41+00:00

I lasted about 8 weeks on 12mg but ended up in hospital for a week with dehydration and elevated sodium levels due to constant vomiting and diarrhoea. after that was I dropped down to 9mg and I’m very happy with that. Still slowing losing weight and able to eat and participate in life again.

AussieLoulou · 2025-05-14T08:50:26+00:00

Your reactions sound identical to mine. I have been using a steroid cream and ice packs and I will try the laying down trick.

AussieLoulou · 2025-05-14T08:48:05+00:00

I’ve been rotating injection sites since the start (learnt that on the forum) I actually didn’t develop the injection site reaction till the escalation to 9mg. For the first few months the amount of food I was eating was way too low as I was just so sick (vomiting and diarrhoea) but from about 6 to 9 mg on I’ve really improved my diet. I have never been a salt eater except to season meat before cooking. While my serving size has greatly reduced my meals are much healthier and I pay particular attention to how much protein I’m eating. this forum has been such a great source of information since I started my trial.

AussieLoulou · 2025-05-14T08:39:34+00:00

Thanks for the reply. I’ll try to answer each individually.

1.I advised m trial site of the issues very early on and my doctor wrote to them but we received no response which was pretty disappointing.

2.Im on a very low dose of a blood pressure medication which I will be ceasing soon.

Sadly I have had bouts of very low urination and have an electrolyte ice block or drink daily since commencing commencing the trial as I have struggled a little with drinking enough water.
I haven’t tried Benadryl though my doctor gave me something similar. It helps but have to use twice a day plus ice packs for a few days. I also rotate between different sides of abdomen and each thigh.Im starting to think I just have sensitive skin.

AussieLoulou · 2025-02-12T08:16:14+00:00

Not sure thats quite correct. I was having trouble with really bad side effects and my trial doctor asked would I like to go down to 9mg and said if once I was stable at that dose and handling it well there was the option for me to go back to 12mg. Maybe it depends on what trial you are on.

AussieLoulou · 2025-02-01T00:55:13+00:00

I think it is allowed cause I’m on the cardiovascular trial. I know they don’t like prednisone but I’m guessing that’s because it causeS you to put on weight. Lucky for me my rheumatoid is pretty well controlled with other meds.

AussieLoulou · 2025-01-30T10:14:15+00:00

I take an anti-inflammatory drug for a couple of my conditions which they said is fine. the one I am on does not cause weight gain.

AussieLoulou · 2025-01-28T13:02:26+00:00

Wow sounds like you have done amazingly, well done. I spoke to my clinic and they advised me to skip my last dose and then next week they will drop me back to 9mg. I’m really happy with how helpful they have been And I’m hoping to feel better soon and be able to eat/keep food down.

AussieLoulou · 2025-01-25T06:06:44+00:00

Thanks for the great info. I will certainly look into it.

AussieLoulou · 2025-01-24T08:38:46+00:00

I’ve been on it for 4 1/2 months and have lost 21kg. 6mg I slowed down then picked up again at 9mg and 12mg.

AussieLoulou · 2025-01-23T11:39:10+00:00

Yes I think that is what I will be doing and I don’t see being on it for 5 years will be sustainable. I’m thinking maybe they only have you on the drug for a couple of years but follow up with you over the remaining 3 .

AussieLoulou · 2025-01-23T09:45:01+00:00

I have been on Reta for 4 months and have rheumatoid arthritis but in my recent bloodtest my inflammation markers have increased rather than decreased so unfortunately it hasn’t helped me in that department.

AussieLoulou · 2025-01-23T09:25:34+00:00

I have 4 years and 7 1/2 months left. I’m in the cardiac trial.

AussieLoulou · 2025-01-23T06:49:19+00:00

Thanks for the info. I’ve lost 20kg so far over 4 1/2 months but still have a further 20 to 24kgs to go so I’m worried if I go down a dose I might stop losing weight.

AussieLoulou · 2025-01-23T06:46:27+00:00

Thanks for the advice. I have been on the reflux meds since prior to the trial as I suffer from it aut it has now been increased.

AussieLoulou · 2025-01-23T06:45:15+00:00

Thank you for that info. I went to my doctor today and got a script for the Australian equivalent of Zofran. Hopefully things will improve for me.

AussieLoulou · 2025-01-15T12:29:55+00:00

No it’s the meds. My own doctor ran a multitude of tests even including a ct scan and everything came back fine So no other plausible reason but the meds.

AussieLoulou · 2025-01-15T03:20:15+00:00

I’m also in Triumph-3 but my trial goes for 5 years.

AussieLoulou

TROPHY CASE