Biologic help......

[Raging-grace]

Hi everyone....wondering if anyone has seen/heard/experienced if there seems to be one biologic that overwhelming appears to work best for RD. I've been on Humira for 6 months and not seeing any improvement.....

[helixhelix]

Unfortunately not.... As yet there is no reliable way of telling which drug will suit each person best, which will cause horrible side effects, and which will make no £&€$* difference at all. So it's basically trial and error. I think some experienced consultants can sense some differences that help them choose, but no guarantees.

There is interesting research work underway on this, looking at gene profiling to see whether there are clues, and looking at gut flora to see how this influences what might work best. I've not read that any of these approaches are yet reliable indicators. But maybe one day......

[Raging-grace in reply to helixhelix]

Hate this friggin disease. If we don't die from it, the meds they give us will kill us.

[farm123]

As helix says one day they may be able to find a way to work out which is best for you without all this experimenting trying one after the other. Luckily my first biologic Enbrel worked and that lasted for 7 years and then tried a few which did not work over a couple of years to finally be on Abatacept which is now working for me. Some biologics target different cells. Either NRAS website or arthritis research have information on the biologics available. Farm

[Jillyanne]

Hi, I am on Enbrel and I have to say from the first injection WOW it's amazing, I realise everybody is different but have to say it's the best 👍👍👍👍

[Chrissycl]

I was on enbrel but came off it to have an op, went back on it and it wasn’t as good,then tried humira, didn't last the 12 weeks on it. Rummy decided to enbrel again but in 2 divided doses on 2 days a week. Up to now it works well for me.

[Betzz]

Hello. I was diagnosed 15 years ago and started on a regimen right away. Over the course of many years I have been on several medications from IV's to pills to injections. Everyone's body rejects or accept something different. I can only tell you that as above if you have a good doctor he will try different things till something works. You have to be patient as most meds take time to get into your system. Good luck to you. Betsy

[Fra22-57]

I have tried 3 with no success at all.was only given the enbreak not humoral for 3 months then no success not onto another which was rituximab infusion which I had 2 of then it was stopped.not sure if they leave you on it long enough to take effect but they are the professional so know.I then got another auto immune disease APS and they stopped all biologics for me

[Raging-grace in reply to Fra22-57]

So sorry Fra22-57.

[Leonwp]

Bless you, unfortunately after trying 2 which after the second dose i woke up in recuss both times with both drugs i was offered a 3rd, on reading patient reports on the number of deaths on the 3rd drug due to it being irreversible i decided to pass.

I said no because i am severely disabled already by the disease and unless they replaced 40 ish joints to reverse the damage done what is the point.

Read up on anything they offer you, but if the first line of the warnings begins MAY CAUSE DEATH in large red letters please think carefully.

[Raging-grace in reply to Leonwp]

Mind if I ask what the 3rd drug was?????

[Leonwp in reply to Raging-grace]

No of course i dont mind, i was on Methotrexate and Hydroxichlorquin, , they put me on Etanercept, 1st dose fine but 2nd dose caused an andrenalin criscis or anaphylaxis apparantly i was talking to the medic with almost zero blood pressure and remember none of it, i was given adrenalin and anti histamine and all i remember is waking up in recuss. 2nd time was Etanercept again 1st dose fine, 2nd time same result another swift trip to A + E but this time they said they thought they lost me and were lucky that enough adrenalin and antihistamine and steroids (apparently) worked. After this i could no longer tolerate Methotrexate or solid food. The consultant then offered me Rituximab, so given my 2 previous experiences i looked up USA sites where the drug was available for cancer treatment for some time, but with fatal side effects the main being pnuemonia and menigitis, the problem being that unlike lower dosed spaced out injections Rituximab is given intravenously in hospital and once its in reactions in the main are not reversible. I think there were 84 people out of 1000 that went in for day treatment and never went home and died within 48 hours, now that was addmitedly in early days of the drug but given my reactions to the other 2 and then Methotrexate and now being much worse i am not prepared to take the risk. I have to add that due to chronic and acute disease i have extensive joint destruction which is not reversible, for example i only have use now of 1 finger and thumb on each hand and have not walked for 3 years, no drug will undo that damage so to me the benefits are minimal and the risk massive therefore i declined. Im sure in early stages of disease and with less damage i may consider it but please not all these "bio therapies" are Chemotherapy with another name, they work by virtually wiping out your immune system short term. They can and do wipe you out and put you in bed for days, reactions very much vary and i have been unlucky but you may not be. I can only say do your research, see where it fits in the picture of your disease and make your decision. Please dont think i wish to discourage you, i certainly dont, for the right patient at the right time they can be miraculous, but for the wrong person at the wrong time they are obviously a bad choice. I wish you all the luck and all the very best. Leon x

[Raging-grace in reply to Leonwp]

Wow....I am so sorry to hear that. Bless you Leon. I definitively appreciate your information. The more informed we are, the better.

[Leonwp in reply to Raging-grace]

So sorry i put Etanercept twice but 2nd one was Cimzia.

[Judetheobscure]

Hi, Humira was my first biologic and it had no effect whatsoever on the disease. I then tried Enbel which has been working brilliantly for me since 2008.

It was completely the reverse for a friend of mine - Enbrel did not work for her but Humira did.

As previously mentioned everyone's body is completely unique and there isn't yet a way of working out which drug will suit which patient so it's still trial and error.

Hope you find an effective one soon.

[Aggie83]

I started Orencia one year ago and it gave me back my life! I began to see improvement in about three months, and at six months I could move! I started exercise class again last week! I take an infusion once a month, takes less than an hour.

[shareasmile]

I was on Humira for about 10 months without relief. When I was switched to Enbrel, I felt extreme relief overnight. It was a miracle and continues to work after over a year. Everyone is different, but I would give Enbrel a try!

[Raging-grace in reply to shareasmile]

Thanks, I sure want to change because Humira is not cutting it. I sure appreciate the responses.

[Aless2002]

I have been on 5 TNF blockers over about 10 years, here in Australia-can't remember the first 3, but went off each of them because of side effects or just not working.The 4th was Humira- that worked really well for a couple of years, then, zilch! Doc told me that I was going on to the last available to me (there are some new ones now)- Simponi- and it has been terrific for me. I have to take MTX with it (govt rules), and that took some juggling as I got constant lip ulcers with MTX until my doc worked out timing, dosage + folic acid dosage. I give myself a short MTX 'holiday' (only on 1 tab/wk) if the ulcers are becoming problematic- seems to work for me. I agree that we all have to find what works for us specifically (if at all.....). Good luck.