So frustrated

Was told in early Oct that I was going to be started on a biologic. Had another appointment today which I thought was to start it. Turns out the "order" only gets started after today's appointment and could take up to 4 weeks to be delivered! So frustrated, had hoped that this appointment would be the start of me getting my life back, when in fact I've just got yet another wait on my hands. Aaarrgh!!

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  • How frusterating!!! Is this normal procedure?

  • Not sure. Just hoping it doesn't get more delayed with the "Christmas rush".... fingers crossed.

  • That is how life will be now. Waiting, waiting waiting. It can be very frustrating. I hope they end up coming sooner than you expect.

  • Thanks, so do I.

  • At least u have a date to start ask for a steroid injection to see u through. I know it's frustrating and heart breaking there alway another hoop to jump through. I've been fighting since August. Finally got told yesterday I could start them. Try to be positive. Good luck xxxx

  • Hi Mhairi54

    It seems that with RA, 'waiting' goes with the diagnosis, so I understand how you are feeling. I'm in Australia, and its no different here; but count myself lucky that I have a good specialist. What a contradiction in terms: 'lucky" & RA.

    Keep strong..you are in good company. Dawn

  • Yes think that's the norm . you would think you would be assessed the day you're told you are going on it.It's all wait wait wait.I tried 3 and none even started working. Now I am neurologically damaged . Said could be due to some many I have had.

    I know you try anything to help

  • It's a slow process I'm afraid. There are all sorts of hoops to jump through to get Biologics...not least the funding question!

    I was told I needed to try Biologics in June & had my first infusion late October....which I understand to be the average wait.. I existed on Depo injections whilst I waited.

    Thankfully it seems to be working.......but with RA it seems it's a waiting game as there just aren't enough clinical staff to. cope with the high numbers of people with RDs ....of all sorts.

    Good Luck....hope you live in an area where they can get all the 'T's crossed very quickly.

  • Don't read about the side effects. If you're anything like me you'll imagine you have all of them!

    I read one side effect of the Biologic I had infused last month "this drug has caused death" .

    I'm glad to say it was not true in my case!

    AC

  • Thank you for your responses. It's Benepali that I'm being started on (the cheapest of course!!). Does anyone know how effective that one is in the treatment of Ankylosing spondylitis? Desperate to get rid of the pain.

    Any by the way, they like to scare you by telling you all about the possible side effects you could have don't they?! I now have a weird feeling of part relief of getting the right treatment and part complete dread!!

  • Hi Mhairi54

    I'm sorry I can't give you any insider knowledge onAnkylosing spondylitis but what I can tell you is that Etanercept ( active ingredient of Enbrel and now the Biosimilar Benepali )

    Is probably one of the best Biologics out there. I would say hands down if you surveyed people even on here then Etanercept would beat Methotrexate into a cocked hat when it comes to side effects or with Etanercept zero side effects, honestly I mean zero!

    No tiredness, no lethargy, no nausea, etc etc etc

    Etanercept has brought me back from the brink in less than a year to now operating at 95% pain free.

    The 5 week wait from being given the green light by a consultant to start Enbrel last November was as you say very frustrating, but in the back ground a lot is happening.

    You will probably hear from the TB screening team who will decide if your risk for latent TB is high and the delivery method will be being set up and a Biologic nurse will be organising a visit to you. The prescription has to be written by a consultant and funding has to be applied for. Benepali though cheaper than Enbrel still has a cost.

    I was exactly where you were at exactly this time last year. My sympathies go out to you as I understand the uncertainty and all the terrifying information you are presented with.

    My consultants words were precisely this.........

    Don't worry anymore we are going to get you on the 'good stuff' and all this will be a memory.

    Just ride out the next few weeks and come back and tell us how you feel after three months on Benepali. Chances are you will be a new person!

    Mx

  • Thank you for taking the time to type that response. That makes me feel much better. I know of two people with AS who were put on Humira and it's literally given them back their lives, so think I was really hoping they would prescribe that one for me, but that opinion is based on the very limited information I have!!

    I was given my training" on how to inject myself at my appointment yesterday (yet another NHS cost saving initiative!). I would have been just as well sitting pushing a pen into my thigh whilst watching a you tube video of how to do it. I thought I would have been given the opportunity to practice actually injecting myself maybe with a water filled syringe/pen.

  • I started Benepali 10 weeks ago having waited 3 weeks for it to be delivered. Don't think I've had any side effects so far except an irritation around the injection site which only started in the last couple of weeks. I have more energy but still have painful feet which I'm wondering whether is osteoarthritis - having hammer toes doesn't help! I've been taking steroid tablets (prednisolone) and am now down to one (5mg) which I'll stop taking in 2 weeks when the hope is that the Benepali should be working! I've found that the steroids helped me to keep going whilst waiting for the Benepali and for it to help.

    Sorry don't know how it effects AS as I have RA. Hope you get a phone call soon about your delivery of Benepali.

  • Hi, I have been on methotrexate since June and now it is not holding thru the week. My rhematologist had now given me the pen Otrexup, an jnjection form of the mtx. Is this considered a biologic? Is the why she order a 2 week supply of prednisone because it will take a few weeks for the new med to work?

  • No Mickeysmom it's not a Biologic but just a different way to administer Mthx.

    Might work better for you than orally.

    Mx

  • I think with RA we really have to be the patient patient. It can take up to twelve weeks for the drugs to start to work, so we are told to be patient and wait and see. If we get side effects, again be patient and wait to see if they subside. If we get really bad and we start the process of seeing if we qualify for anti tnfs we have a DAS score done and then patiently have to wait and have another one done and then finally when we are told we can have them we have to wait again, for the funding, then the delivery and then the visit by the nurse and then what?.....be patient again to see if it works.

    All that to one side though I am on enbrel (expecting to be put on the cheaper one in the near future) and its been marvellous!!!!! I started to feel the benefit of it the next day and went into remission with it. Four years down the line still am no side effects at all. Consultant did say that it's the best one to take because you build up less antibodies against. Taking Mtx along side helps to stop this from happening.

    If it works like it did for me it's well worth the wait. Good luck. xx

  • So many are for so long suffering before they get the med that works or relize that meds just don't work, and have suffered in vain from all the side effects of the trial and error process­čś× Hopefully in the future there will be ways to identify what meds work for different patients.

  • The powers that be are looking into some sort of I think DNA screening to give the right drug for the individual. I think they called it designer drugs or something similar. Did read about this a year or two ago, not read about it recently. Hopefully in time they will be able to put us on a drug tailored to the individual and not take pot luck with these drugs.

  • I too am wsiting to go onto Benapali I have emergency appoint for my dic seee in flare up before they will prescribe it. I have had severe allergic reactions to MTX and Sulfasalazine so I am a bit worried about this biosimilar. Fingers crossed it will work I just want my life back.

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