Hello everyone......


I know its been a few weeks since I last posted, but I have been enduring a massive flare. I went for my 12 week appointment after starting Humira in May. My consultant said that he hadn't got the results he was expecting from the drug, however as I had experienced some moderate relief we should keep going for a couple of weeks longer. He did however reduce my oral steroid intake to 10/7.5 mg alternate days for 2 weeks, then supposedly 7.5 mg for two weeks etc....... Needless to say that after only 8 days I started in a massive flare causing my CPR levels to increase from 19 to 43 the highest since January

I was a little dismayed that nobody from the clinic contacted me however I was given an emergency appointment today. They have asked me to participate in a new study called "Switch". Its for people who have not responded on the first TNF. I just wanted to know if anybody else is partaking in this study and if so what I should expect.

Ta very much

Donna confused.com

Hi Donna!

I am sorry to hear, you are feeling so poorly and becoming despondent about the lack of effect of the humira.

I really don`t think, that 3 months are enough to know, if it will be right for you, so hang on in there, as the doctor has advised. I have been on Cimzia for 18 months, and it has been quite a roller coaster with very high CRP in between very good readings. At the moment my CRP is 16, which for me is fantastic, but not great for others.

I have read about others on the Forum having flares after a few months on a anti-TNF and then settled down feeling better. I think, that is what is maybe happening to me, and hopefully you will get through your flare quickly and start feeling better.

Merete

Thanks for all your responses.

Because my disease is still very active, they have decided to take me off Humira. In order to participate in the new SWITCH trial I now have to go through a cleansing out period of 6 weeks hence the depo injection.

The weird thing about the switch trial is that you really don't know what drug they are going to try next. Apparently I go back to the hospital in 4 weeks time and have some screening test, ie. bloods, Xrays, ECG. Then 2 weeks later I go back to the hospital and will find out what treatment I will receive next, it could be another anti tnf or Rituximab or abatacept.

if I dont participate in the research the NHS would give me Rituximab (not sure of the spelling as its not in front of me) as my next course of treatment as NICE does not recommend another course of anti tnf if the first one fails... Apparently my new treatment will be selected randomly via computer, not sure I am keen on a computer deciding my treatment but hey in for a penny and all that.

The outcome of the research is to help consultants have a better understanding of which treatment route is best for patients and then hopefully get NICE to approve different treatment methods instead of the long drawn out process that we have to endure whilst deciding which treatment is best for each individual need. If anyone else is partaking in the research i'd love to hear your views on it.

I will keep you all updated on how it goes. 25th September is my next appointment so lets just hope the depo injection kicks in soon and lasts 4 weeks. I have only had 3 of these before and to be honest I didn't get much benefit.

D

Hi Donna

I always cringe when I hear of people with active disease being invited to participate in these various programmes. I have no problem with the research, it is after all very necessary, but what concerns me is that you are not being treated in accordance with a specified drug regime which will aim to control your disease. You are not the number one here, the study is number one!

My understanding of the NICE guideline is that if you have failed on one anti-tnf you can switch to another before being tried on something like Rituximab. I was about to start my third anti-tnf (heart problem put paid to that) and now being considered for Tocilizumab instead. In Rheumatoid inflammation can be caused by a number of different factors such as tumour necrosis factor, inter-leukin 6, too many of certain B-cells or T-cells. The biologic drugs work on these individual areas to bring inflammation under control. We are all different and respond differently to the treatments. Normally a choice of drug is made from your joint symptoms, levels of fatigue and inflammation, one drug may be more suitable than another.

There was a lady on the forum a couple of years ago who took part in an anti-tnf study. She believed she was jumping the queue for a more effective treatment that others were waiting up to 18 months for. She was newly diagnosed and skipped the normal DMARD treatments completely to enter this study. It didn't work and after months of uncontrolled disease now has irreparable damage to some joints and is now on DMARD therapy.

What I'm saying is consider YOUR position carefully. It's great to be altruistic and consider the benefit of the study for the overall good BUT is it necessarily the right thing for you right now? Is it perhaps better to have your own specific plan for treatment laid out so that you know what to expect in the future? I don't want to confuse you but at the end of the day you want controlled disease not a set of stats on a researchers computer and damaged joints requiring surgery.

Lyn x

P.S. Remember, you have been chosen because you meet the criteria for their research NOT because it's the best way forward for you!