enbrel

tyreon

Hi all.I have been on Simponi for some 4 months. Some of its effects have been positive,but others,not so.I requested Simponi so that I could go away for some month(maybe more)without having to inject myself with Enbrel every week(It sounds strange,but I often don't know where I am staying,and move on every 3 days or so)Now,after the 4 months,I'm not so happy.I think I felt better on Enbrel and feel like returning to it.I did feel as if Enbrel was losing a bit of its efficacy,still,from recollection,it felt better than Simponi.What I'm asking for, besides comment is...what's the longest period of time that people taking Enbrel have remained on Enbrel because of its effectiveness?You were on Enbrel: when did it cease to control your RA,AS...

barbara12

Hi
Sorry I cant offer any help, but I just want to welcome you to the forum,and to say it may be quiet for the weekend but hopefully someone will be along very soon x

frogmorton

Hi Tyreon

I have no personal experience - I just remember a chap being on here who was on enbrel effectively for many years.

In your shoes I would go back to the rheumatologist for some advice.

Oh and Barbara is right - weekends can be rather quiet on here.

love

Toni xx

tyreon

thanks barbara and toni. am also new to this computor thing,so slow with how things work.yeah,really not sure where i should go with this dilemma.just hanging in with this simponi,but not sure if i should continue.will wait and see whoat others have to say

dreamdaisy

Helo, it's nice to meet you. I can't help with the enbrel thing because it did very little for me but I am still taking humira which I began in July 2009. (or was it 2010? I can't remember. :oops: ) I've think that in that time it has worked well (combined with injected meth) in controlling my PsA but by no means has my life been returned to me, viz the life I had before arthritis. I am fairly sure now that what I want doesn't exist so now I tailor my expectations accordingly. That way I can't be disappointed. I do the meth weekly and the humira fortnightly.

Some have had very good results with these meds but we rarely hear from them because of that. My case is complicated by OA (caused by joint damage from the PsA) and of course the meth etc doesn't touch that. I know that the humira will eventually fail - none of these drugs work for ever, more's the pity. I wish you well and I hope you are allowed to return to enbrel if you decide that that is the way to go. DD

tyreon

ta for reply DD.appreciate ur txt.had hoped for good and many replies to my queries.not so.guess i will ask my rheumatolgist for others experiences with enbrel/simponi.be interested to know if there has been others who have taken biologics who have had their condition go into remission...so much so that(with 'permission' of rheumatolgist)have ceased medication...and then have never had to use it again! Guess I am livin in fantasy land:once this arthritis has locked onto you,it never leaves you.Wish I could get a divorced from it tho'.

dreamdaisy

I'm on my third anti TNF and my final, when the humira stops working that will be it for me. Drugs can help greatly (see Mat48's post about meth) but they don't take it all away permanently. Arthritis is the gift that keeps on giving. Those who are doing well don't post because they don't need to. I wish you well - there are no easy answers to any of this and what helps one may not help another. DD

cherrybim

Well the gold was wonderful for me. Total of 20 years in remission. So never give up, that's what I'd say

I should add the caveat that the sodium arithiomalate has to be continuous. In other words if it's worked its magic once and its administration has ceased, one can't go back and have it administered again, more's the pity

cherrybim

Ooops, I should have said I've been on Cimzia and now Enbrel.

Nuffink like the Myocrisin though

scattered

I had 2 and a half years on Humira and almost made it to medication induced remission. Never quite got there though. I had to take it in combination with hydroxychloroquine, azathioprine/MTX and steroids. Eventually it just stopped working. I've been on rituximab, and that did absolutely nothing. My rheumatologist uttered the words, 'this isn't working' and i agreed. I moved onto Enbrel after much discussion and it has done very little. Like DD, I'm on my third and final biologic, after this one there shall be no more unless the NICE guidelines change or I qualify for a clinical trial.

I hope you find the right answer for you. I would caution you to be careful aout switching back and forth between drugs because the supply is not limitless. I would hope that if you swop from Simponi back to Enbrel it will only count as 2 bioogics not three, so you still have wiggle room.

Good luck.

phoenixoxo

Hi Tyreon,

I've had three sessions of Enbrel from 2006 to date, totalling about four years. It's worked well for me, but only in combination with steroids. I've tried other drugs, but in all cases either they've had no effect or the side effects have been too devastating for me to continue treatment. At present I'm waiting to be approved for Simponi.

I agree with Toni: have a word with your rheumatologist and explore your options. I hope you find a treatment plan that's right for you

Best wishes,
Phoebe

tyreon

wow! i thought i knew something about medication,and what woz on offer,but have learnt something new! Are we only allowed 3 goes at biologics?Where are these rules and regs? And how do we gain access to them? Apologies: but my life experience(s)have taught me to distrust any authority. As a review of all newspapers and authorities will reveal,sometimes,unless informed,you can be shortchanged by those who are deemed our betters.Strange to say,those who are deemed "our betters", with power and £££, get what they deny others! Then want MORE!

I don't trust NICE


Leaving the above aside,I think I read Pfizer have developed a new drug which is taken in tablet form.Wish I could remember more about it.On reading about the med. I thought(if it is seen to be safe and effective)would be better administered than current biologices,and easier taken when away from home.

tyreon

xeljanz.Pfizers new drug.

Apologies in advance for new rant but...Does anyone believe in our parliamentarians havin our best interest at heart?Sometimes when I review whats goin on in this world I think I also need therapy...or shootin!

Health must be one of their least concerns.More wars make £££,make jobs...

scattered

The current NICE guidelines are available on their website but it is very difficult to decipher them and none of the information is contained in one single document. NRAS provide a very good booklet with all the information in it at http://www.nras.org.uk/includes/documents/cm_docs/2012/j/j5310_biologics_the_story_so_far_2_hi_res.pdf . Basically the guidance says that you can have 2 Anti-TNFs and then rituximab or tocilizumab. The guidelines seem to say that if you fail the anti-TNFs and rituximab then you might be elegible for tocilizumab, but only if you fulfill certain criteria. I have a feeling that one is PCT related as well. My rheumatologist seems fairly sure I wouldn't get funding for it.

My rheumatologist was telling me about drug companies having developed oral biologics and hopes they will become available in the new year. However, they still have to be assessed by NICE before they will be available for treatment on the NHS. He reckons that once they have entered the field of play the overall cost of biologics might come down, and that would change NICE guidelines on treatment. We can hope!

tyreon

Ta for reply.Good to hear of other medication coming on in rheumatology.Once cost is reduced...yes,may make room for easier prescribing.(Has anyone heard of anyone over 70+ getting biologic medication?!)

With the advancement of these new drugs, and with the condition affecting millions,I can see there's £ to be made in it.There's more hope.

At the same time,hope precaution and regular policing takes place.Remeber Vioxx!!! That got the green light until American investigators cried foul

salamander

Interesting info Scattered. Thanks for posting that.

Yes, I do know someone over 70 who has been given biologics and it has transformed her life, from what I hear.

scattered

I attend an RA support group. 40% of our members are over 70 and many of them are on biologics. Prescribing them is not prohibited by age (in adult RA - it is in JIA as some of them haven't been proved safe for children yet).

tyreon

Again,ta.It's just that when I was introduced to biologics a nurse came around to visit me to supervise my first injection. By way of conversation I asked how many individuals she new over 70 who were being given these new medications.She said she knew none.Forgive my suspicious nature,but I wondered if there was some subliminal age discrimination taking place here.I suspect all authorities would shout out that there isn't or should not be.But from my work experience I know there to be so. Then,the squeaking door gets the oil.
Related: my mother is in her 90s,crippled with arthritis and Ulcerative Colitis.You will know that the two are cousins.My mother wouldn't dare ask a doctor for a review,and I would not be given permission to ask on her behalf...housebound,she's buggered.Was in the 2nd World War too.

Forgive me: for the most part I respect physicians.But once above consultant level you start to deal with management,£ and a different set of priorities.When I look at the crowd that I am supposed to look up to now...Grrr.Arrgh.I've got the screamin' habdabs