BiP trial

[martha]

Hi everyone,

I haven't posted for a long time but read through the posts most days. I just wondered if anyone, like me who went on the first phase of the BiP trial is waiting to go onto the next phase of the BiP trial at Guys hospital?

[JuneRose]

Hi I went on the 3rd phase in May last year and completed all the follow ups in August. I contacted Guys to ask what would happen

Next which was 2 weeks ago to be told all trials had finished and the results would be published soon I was hoping they would say

Something more positive.

I was told I would receive a letter soon after the 3rd stage had finished but I havent.

Please message me as I don't post on here much at all you might know more than me.

[martha in reply to JuneRose]

Hi JuneRose,

They suggested I contact them at the end of this month, so will let you know if I hear anything. I am hoping to participate on the next stage of the trial. Will let you know if I hear anything.

[JuneRose in reply to martha]

Did you hear anymore about Nest phase of BIP .

[martha in reply to JuneRose]

Hi, not yet, will contact the prof again this week. Hope that you are doing okay.

[JuneRose]

They told me at Christmas it had finished so I've agreed to go ahead with Embrel not keen but have been an almost constant flare since Christmas.

[martha]

I know just what you mean, I have waited in hope but am deteriorating now. The steroids have kept me going but the fatigue is bad, am no good after 4pm. I have a Rheumatolgy appointment late April, if the trial isn't scheduled by then I think the time has come where I must give in and take the biologic (Humira) which they wanted me to start several years ago. I have been fortunate not to have too much joint damage. If you live anywhere near London and would like to meet up for a coffee and chat just let me know. I live in Kent but come into London frequently.

[JuneRose]

I have only just seen your message I haven't been great no news fromGuys so l have agreed to Enbrel got the funding and due to start in 2-3 weeks have you heard any more.

[martha]

Hi, no news yet. I too am moving towards taking Humira, I am not sure how much longer I can wait. I have been agreed the funding and they have been wanting me to start it three years ago. I have a rheumatology appointment on the 20th. I think that I need to know by then where they are on the next phase of the trial so that I can make a decision. I hope you are feeling kind of okay today.

[kamaluppal]

Hi Martha, Did you get the call back from Guys? A lot of us might not post, but very keenly follow your "reports" How are things now. Should we hold out any hope on BiP?

[martha in reply to kamaluppal]

Hi Kamaluppal,

I heard back re the BiP trial, that I had the real thing opposed to a placebo. I had a really good result two days after the infusion, hopefully it will be approved and become available ASAP. Take care, Martha

[kamaluppal in reply to martha]

Thanks Martha. It's actually for my wife. Fingers crossed we hear good news sometime in the near future. But it is comforting to know that there are people working to solve the issue rather than just contain it. Best Regards, Kamal

[Metal-legs]

How did the BIP trial go and what did it entail? I really hope this becomes available as after 15 years of aggressive disease I have only one more drug option available. I would be interested to hear what you thought of BIP.

[martha]

Hi Metal legs, I was on the trial for BiP. The trial was an infusion of anti inflammatory drug which targeted specific cells. I was informed approximately six months later, once the trial ended that I had the real thing, opposed to the placebo. For me, there was no question that it worked. I think I would need a higher dose. On the day that I had the infusion and a couple of days after, my inflammatory markers increased but I woke up on the Saturday, two days following the trial and I had no stiffness, no swelling or pain, except in a couple of joints which have erosions. I had one day where I would not have known I had RA, and it lasted approximately 3 weeks, the symptoms gradually came back over this period of time. I really hope that the treatment was successful for others taking part in the trial and becomes available. I will email the professor to see if there is any news and will let you know. Take care, Martha

[Metal-legs in reply to martha]

Hi Martha Thanks for your reply, how often did you have the infusions and did you have any side effects? Did you take any other other drugs while you were on the trial? That sounds really promising that it worked so well for you. Have all your symptoms come back since you finished the trial? It must be really frustrating knowing there is something out there that can work for you but is not available. I really hope BIP becomes a possible treatment for RA in the future.

[martha in reply to Metal-legs]

Hi,

The trial consisted of just one infusion. I was taking sulpha, paracetamol, stomach protector and anti sickness drugs and 10 mg of steroid, before, during and after the trial. I was recently due to start biological but have an open wound on my leg which keeps getting infected so I cannot start the biologic. Although it has been painful I keep thinking that maybe it is meant to be! I had 15mg of the infusion which was amazing for one day, just like pre RA days, then ever so gradually it wore off over a three week period. I am guessing that a slightly higher dose if permittable, if it becomes available would last a month.

[martha in reply to martha]

I forgot to say that apart from a headache after the infusion I didn't experience any side effects, the headache could have been the lighting in the room which was really bright. Three days after the trial I didn't need to take such regular doses of diclofenac or paracetamol, but continued as advised with the other drugs.

[Metal-legs in reply to martha]

I am sorry to hear about the infection on your leg, I hope that heals up soon for you. Thanks for being so open about your BIP experience. It sounds a very promising treatment. Can you post again if you hear any news from the Professor?