I have seen my wonderful consultant today who is so very understanding.
She took me off the sulfasalazine- and im trying Luflunamide(I hope I spelt it right) if this is not effective or I get side effects she told me I would have to try the biological drugs.
Im wondering if many are acually on these drugs and what there thoughts are?
Hi, I can't take anti-TNF but many of my friends in the AS community have been prescribed them.
Most people say it's the best thing that's happened to them and they've changed their lives, sadly others have had to stop due to severe side effects.
I guess it's horses for courses, like other drugs what works for one doesn't work for others.
Beth xx
My Rheumy nurse says she wishes that the NHS had the budget to put everyone on biologics as she thinks they're much better, and generally less side effects than the DMARDs. Only one opinion, but she does see hundreds of people with RA. Polly
From my Rheumatologist, he also feels the Biologics are better, more effectiove in stopping and slowing the progression of RA. Usually side-effects, if any, are minimal. There are more side-effects to the DMARDS, and NSAIDs.
Personally, I've tried them all, cannot take any NSAIDs as they cause swelling and increase blood pressure. Am taking the DMARD Leflunomide (Arava) along with Methotrexate and the bilogic, Simponi. seems to be most effective, along with the pain med combo of Tramadol, Neurontin and Hydrocodone.
There is an ambassadoreship in Washington, pleading with Senators to get the Pharmaceuticals to produce the bilogics at a more reasonable fee. $3000 per month is totally ridiculous! It is some coverage by insurance, but far from all of it! L.xx
hiya,
I started Enbrel last August and was in remission by xmas 
No real bothersome side effects, have a constant cold but thats nothing compared to the pain ect of RA.
Intresting.
Sound great.
Do you have the injection Wiliby or do you have it introvenous?.
injection, epi-pen, can now inject whilst eating my toast
I'm so thankful for biologics! hope you get there too x
hehehe this made me giggle!!! those pens are amazing aren't they? pity the mtx injections are not like them! the simponi one is a huge one with a big button u push and u can barely feel it!
ill have to try it with my toast next time!
Hi, regarding the leflunamide, I've been on them for some years now but on a low dose, they did try increasing them but my liver didn't like it so the dose was reduced again. They did reduce a lot of the swelling in my hands and feet when they kicked in (a couple of months from what I can remember).
Side effects in the first couple of weeks: needed the loo more often (and had loads of flatulence !) (Other RA meds: mtx. and diclofenac - tramadol for pain relief) and was started on Humira just over a year ago. Humira didn't suit me so had my first course (2 infusions) of rituximab some time last year. Haven't seen any benefit although my blood tests say otherwise. Don't know when I get the next one.
Only real relief I've found has been after steroid injections (had my 2nd one on Friday). How good it was yesterday (and this morning) to be able to get up out of bed first thing in the morning feeling pretty much normal and almost pain free, even managed to walk up and down the stairs normally!
Hope leflunamide (sometimes referred to as Arrava - why 2 names have never understood) helps you. Like I say I did get benefit at first.
Judi
great your feeling much better Judi- gosh, you have been on quite a lot of medication-it amazing what the bod puts up with!
I too had the steroid jab on Friday- has not done a deal for my hands- every where else is hummmm ok.
As for the naming of your meds- the reason why they have two names is one is a brand name-the other is the name of the meds.
Caroline x
Hi there
I have just started a biol drug-cimzia- Had 2x injections wk.1 followed wk later by all over rash for 2 days. This calmed down so second loading dose was halved- and so far so good. I really do feel some benefit already. Having tried lots of drugs; gold;ariva;steroids;metx; for many years - now 61 had RA since 23 - I'm hoping the biologs work, since I've been taken off all anti inflamitories following a stomach ulcer. The trouble is we move the goal posts as soon as we have some relief, I think! Still at my age all I now want is some mobility; strong drugs and an excellent team enabled me to raise two daughters; with a great husband! All effects now showing from damage done to organs!! BUT, I still prefer quality of life to quantity! Good luck and remember its your body and you know best what suits you. Hopalong.
Hi Hopalong,
I cannot understand why you were not offered the biologics when they hit the shelfs?
Clearly you would have been the ideal candidate having suffered for the legnth of time you have.
There is no wonder your organs are under pressure having had all that lot pumping round your system.
I wish you all the luck for getting better lets hope this is for you
Caroline x
hello,
im on methotrexate and recently started simponi which is a biologic and i feel a looooooot better only after a few weeks so i cant wait for the coming months of injections! i really hope you get the biologics as i think they are the best!
x
Hi Laney,
Good to know your on the mend
Your so young having this diagnosis, my rhuem consultant said I was too young (im 41) to get this- but mine is due to my Thyroid- its an auto immune condition.
That what sparked mine off.
Good luck in your recovery
Caroline x
hi caroline,
was it because of problems in your thyroid that kick started the arthritis? like a reaction, ive read that can happen- think its called reactive arthritis. im not too great with anything thats not r.a! i have rheumatoid arthritis which is an autoimmune disease also, but it is more common in women aged 50+ it really can happen any time, even poor little kids! god love them its terrible being so young with it now at 27 never mind being so tiny and not being able to deal with things like an adult 
best of luck with the drugs- my advice would be to push for a biologic, if i could only turn back time i would have saved myself a lot of pain, physical and mental damage!
take care and have a lovely day x
Hi Laney, Yes quite right it was.
I have Sero-negative RA, - which I feel sure I have had for the last 8 years, only diagnosed last June. No GP would consider arthritis due to my age-ha!
I had the steroid injection last Friday- but since Sunday the pain is back with a vengence.
I hope your well and enjoying yourself xxx
jesus! those gps need to get their arses back to uni! poor you 8 years is a long time to have it with no diagnosis. have you tried the steroid tablets? i felt they worked 100 times better than the injection (plus i have a nasty dent from the injection!)
take care x
Biologics. I wish.
I have had RA for 20 years. I nearly got biologics 4 years ago. Then they changed their minds. And again last year. But changed theiir minds again.
Maybe I don't look sick enough. I feel pretty dreadful.
Or maybe it's my post-code. I know they give them out "like sweets" in some places. OK not quite like sweets, but you see what I mean!
I wonder what criteria they use to make those sorts of decisions. It can't just be their budget! Can it?
When I went on Friday Phoebe,
My consultant told me if the drugs I am taking to slow the RA down dont suit me- (I have had problems in the past with side effects) then the only way forward is the biologics. I feel real bad now- cos the way some NHS trusts work - dont make these things fair.
Mind you having said this I have other health issues equally if not more important than this ,which I have been refused treatment for- im no going into detail but I have had a bad time of it this last two years, so my rhueme consultant has more than made up for the greif I have endured these last couple of years.
I wish you luck in your quest for getting the treatment you need- keep pushing for it.
H
First Pill Biologic Drug Approved by FDA yesterday
To biological or not to biologic
Biologic or not to biologic 
Biologic 
