Still waiting

[JayneN]

Hi still waiting for my biologics to start . In real bad pain ATM . I have a great RA specialist now they want to move me as on top of everything else I now have Ankylosing Spondylitis. Has any one else got this as well as RA? Beginning to loose the wil to live atm .

[jim1063]

Hi Jayne ,

I've was in the same place as you from Nov. last year till 4 weeks ago when eventually I started on Etanercept. All I can say is you will get through this Jayne. I can't comment on the A.S. but as I said in my last post there is light at the end of the tunnel. You'll find out you have great support when the guys on this forum start replying to your post. Stick in there Jayne YOU will come through this. Thinking about you and all the best.

[JayneN in reply to jim1063]

Thankyou Jim . I've had RA Nearly 18 months now as well as UC. It's like everything flaring at once . Wish they would hurry up and put me on the biologics . Thank for your kind words and I'd be lost without this site everyone is amazing

[Jora in reply to JayneN]

Hi, I’m in a similar position. I was due to start my third Biologic, tu then there was a suspicion that I had heart problems. I’ve had an angiogram and all is clear, but my next rheumatology appointment isn’t until September. I’ve contacted the nurse hoping that she can activate this. We’ll see. Urgently, I’m on MTX injections st 25 mg and Prednisilone 7.5 mgs.

I have suspected AK. My neck has been very painful and stiff for the past month, but just yesterday it felt a bit better, so maybe it was muscular.

Have you spoken to your specialist nurse about the delay with your Biologic?

Good luck J

[JayneN in reply to Jora]

Yes I've spoken to her she said they're just waiting for the consultant to say go ahead . I think we spend too much time waiting around waitin for things to happen it makes us all worse .

[Fra22-57]

My biologic never worked and I tried 3 unsuccessfully. Don't know how they work for some n not others

[JayneN in reply to Fra22-57]

I've not tried any yet so

Fingers crossed 🤞

[cathie]

I’ve been on biologics for a long time 10+ years. Most of the time they worked. Best with another meds in my case methotrexate and now leflunomide xx

[JayneN in reply to cathie]

I'm on MTX so will he staying on that . Just wish they would hurry up .

[cathie in reply to JayneN]

Do you know what they're waiting for? Could it be funding? Or do you need to show any blood etc results? I hope you get it soon and that it works. It might take a while to kick in though, they'll tell you.

[JayneN in reply to cathie]

I've had all my bloods n chest x Ray n MRI so don't know what I'm waiting for . It's a new biologic called Secukinumab . I can't have any of the others they said because I had skin cancer in 2015 ... it's supposed to be one of the best .

[weathervane]

Hi jayne , try and keep positive while you are waiting. I started on biologics 2 years ago for Sjögrens and when they kicked in they changed my life as i had been in a constant flare for months.

Ps im now waiting again for disc surgery as slipped a disc at Christmas- its a miserable wait but now provisional date for April 27 can’t come quick enough. Best wishes, hope you get a definite date asap 🌸

[JayneN in reply to weathervane]

Thankyou ... and good luck 🌹

[dbestdeb]

Enbrel changed everything for me. It addressed the pain some and really helped the fatigue a lot. I really feel lucky and I have been put on it. Hang in there! Maybe biologics, once you finally get one, will be your answer too.

[JayneN in reply to dbestdeb]

Xx

[Pulfs]

Hi Jayne I've had RA for 24 years been on biological retuximab the last 7yrs every 6mths it works with methotrexate takes the inflammation away. When I've been waiting too long after they say next infusion due I give the infusion unit a ring and ask them to give me a date. Check with them they have had the letter giving them te go ahead to start sometimes the letter is slow being sent over.

Good luck with your treatment and hope it won't be too long x

[JayneN in reply to Pulfs]

I will do that first thing Monday . Glad it works for you and thankyou for your advice .

[Pulfs]

That sounds good.

The days following my infusions leave me very tired but luckily my husband is there to look after me.

Good luck x

[Ouchyjenna]

I was in your exact same position last year. I'm now 12 week on etanercept and there is light at the end of the tunnel. By no stretch is this a miracle cure I'm still taking painkillers and steriods but everything is a easier. the constant feeling of being in a flare has gone and I have a little bit of life again. you willget throughthis and it will be worth the wait

[JayneN in reply to Ouchyjenna]

Thankyou ..... it gives me some hope at least. I know I'm never gonna be 100% my normal self but to just a bit more able bodied and less pain sounds great . I let u know how it goes ... thanx