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Been there, done that. Lived to tell about it.:roflmao:
 
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Discussion Starter · #164 ·
Well, that's it. I had my final infusion of benilumab / placebo last week. As it was the final one, I also had an ECG and half my blood drained for testing.

The usual side-effects followed for the next 2 days - fatigue and headaches. Alas, I didn't get that energy rush I had after my previous infusion.

So, how do I feel after the year-long trial.... A hell of a lot better than I did over a year ago. I don't feel as fatigued as I did. My joint pains aren't as severe as they were previously. Red cheeks are still there, but that's no big issue for me. I must add though that I've remained on 5mg of preds and mycophenolate through out the year, so not absolutely sure how I'd feel without them.

If I haven't been on the real thing and have in fact been on a placebo, my gosh would I be shocked!!! That would be one BIG mind trick for me to feel this much better than before!

Downsides:

* I lose 2 days each month - 1 whole day for infusion. 1 day due to severe fatigue, where I really can't do much.

* Recently I had a lot of hair fall out at the back of my head, eye brows lost a bit of hair. Not absolutely sure whether this is to do with the infusion or down to the Lupus.

I now need to go for a final trial consultation next week, where there'll be more tests... and maybe they'll tell me if it was or wasn't the real thing!

I'll keep you guys updated :thumbsup:
 

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Thanks for the update! It will be interesting to know if it was the placebo. I highly doubt that it was. I remember having the same exhaustion after my infusions. Well, keep us posted. Hope all is going well in other parts of your life. Peace!
 
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Depending on how the trial was done it is also possible that you could have been on a lower dosage of the real thing. It will be interesting to find out once all the results are in.
 

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Discussion Starter · #167 ·
I'm more nervous about the final consultation and knowing the results than I have been throughout the infusions :lol:

Throughout the year, the lead Professor has mentioned several times that my Lupus markers have all been headed in the right direction - down, down, down, down, down! But hopefully all will be revealed on Tuesday.
 

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Discussion Starter · #170 ·
Well, guys, it's all over. The trial officially for me ended last Tuesday, where I had my final consultation. Both consultants who were running the trial and the trial nurse have been absolutely magnificent through out the year. They have had to put up with my initial absolute fear of my kidney diagnosis. My incessant questions. And my warped "sense of humour" :lol:. The only thing I can say is Saints have the patience of these guys :roflmao:

It's been an interesting trial for me for many reasons. I must admit, I'm a bit of a risk taker / dare devil. When I was offered the trial, everything sensible in me was saying "don't do it. don't do it. don't do it.....". But then I had 2 other voices in my head also. One saying "do it. do it. do it!" to take a risk. And the other saying "do it. It may not only benefit you, but may also benefit all those who are or will go through the same things as you". As you all know in graphic detail, I did "do it", so I won't torture you by going in to the details of my year all over again. I will though give you details of what happened on Tuesday.

It was a quick consultation to take my final bloods, review the results over the year. And that was it. I was going to take down the results but was told I can access them online. Unfortunately, the actual Lupus results don't come online. C3, C4, DSDna etc. I will ask for them at my next appointment.

I do have my protein results though, which may give a small indication as to the possible effects of Benilumab (or the power of the placebo effect) - my protein a year ago was around 300. The PCR now is - 52 (albeit with the effect of my Mycophenolate and my blood pressure medication). Anything below, and most consultants consider it a remission.

My C3 and C4 results are around the 3ish mark, but these are from memory, and my memory is awful. But they were around the 3 mark. Next time I visit, I will get the results.

I will and won't miss the infusions. I will miss them as I did enjoy having the total relaxation time away from all the stresses and pressures of my life. I could just sit there for a couple of hours and relax. And I won't miss them as I lose 2 days of my life each month. 1 day for the infusion. And 1 day to recover from the fatigue.

I'm sure I've forgotten things to feedback. If I remember, I'll be Arnie and I'll be back..........

I don't know if I've done this yet or not, but I'll do it now just in case I haven't.... I want to say thank you to all of you lovely people on here who have advised, supported, reassured and put up with me since I've come on this site. In my days of absolute panic you guys are the only folk who have managed to calm me down x.

If we ever meet, I owe each one of you a milkshake :thumbsup:
 

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Congratulations on your improvement. Now what happens? Will you be put on Benlysta in the future if you had the real thing to keep the kidneys in check?

You have thanked us but I would like to in turn thank you. It takes people like you with the courage to participate in medical research to further the advancement of treatment for the likes of us. Also your posts may have helped others considering doing trials or trying to make a decision on trying the drug.

Take care,
Lazylegs
 

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Discussion Starter · #172 ·
Congratulations on your improvement. Now what happens? Will you be put on Benlysta in the future if you had the real thing to keep the kidneys in check?

You have thanked us but I would like to in turn thank you. It takes people like you with the courage to participate in medical research to further the advancement of treatment for the likes of us. Also your posts may have helped others considering doing trials or trying to make a decision on trying the drug.

Take care,
Lazylegs

Thank you for your kinds words Lazylegs. And from a rather selfish point-of-view from me at least, as I've said before a fair few times before, I'm one of those tree hugging, hemp wearing, hippy vegetarian types who are against all forms of violence against all creatures, so I feel like a hypocrite when I take the many many pills I need to take as I know that they've been tested on animals at some point. It truly does pain me to know this. But, maybe, just maybe, a small vindication to my hypocrisy, at least I'm prepared to take that risk of being a "guinea pig"! But that's just my personal view guys.

I'm sure I've forgotten things to feedback. If I remember, I'll be Arnie and I'll be back..........
And there we have the proof. I forgot to let you guys know what happens next. :lol:

At this moment, the consultants don't think I need further infusions as my bloods and urine results have shown a marked improvement from a year ago. If things begin to deteriorate again in regard to joint pains or the kidneys, the first action may be to have another Rituximab infusion. If things still are the same after that, the consultants will consider me going back to the Benilumab infusions or even the Benilumab jabs.

Not so sure I want the jabs as my elderly mother lives with me and she knows nothing about my condition (although she's very switched on so most definitely knows something isn't right somewhere!). The jabs would need to be stored in a fridge and therefore would be difficult to hide anywhere. Likewise, my 2 little girls know nothing about my condition and I most definitely do not want them to know until absolutely necessary.

I think I also forgot to mention that I won't know if I was on the real thing or placebo until the final patient in the trial completes their year, which will be in around 10-11 months. Arghhhhh! I need to know :eek: But I can understand why the trial consultants must do this.

I have another appointment in 1 month, but from now on they'll just be normal consultations. The usual 10 minutes, "wham, bam, thank you, sir. And we'll see you in 4 weeks time". :lol:
 

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Thank you so much for letting us to go on this journey with you.
I hope and pray that you continue on with all your good results. Living with lupus stinks in so many ways!
Maybe you could buy a small dorm refrigerator and keep in your bedroom or closet?
Take care of yourself!
Lyn
 

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So happy to hear of your success with the Benulab Trial. That is such wonderful news to read of your remission!
I hope you continue feeling so well and that all goes well for you in the future.:flower:
 

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Discussion Starter · #175 ·
Alas, no remission.

A very quick update. Unfortunately a negative one. This morning, for the first time in almost a year, I woke up with agonising pain in my right wrist and it's middle finger :sick: Prior to the trial, this was a regular occurance. But since the trial began if there was any pain it was very minimal.

The good thing is, a couple of paracetamol reduced the pain well.

I'm.hopong this was just a one off.

Maybe another Rituximab jab is needed. I'll see how I go till my next appointment at the end of this month.
 

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A log of your painful days might be helpful for your upcoming appointment. The type of pain, how long it lasted and what you had done might be helpful to the doctor.
 

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Discussion Starter · #177 ·
A log of your painful days might be helpful for your upcoming appointment. The type of pain, how long it lasted and what you had done might be helpful to the doctor.
I always make a note on my Notes app on the phone. Date, effect, level of pain etc. My consultant finds it funny, but understands why i do it. I have a terrible memory :confused::lol:
 
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