What am I to expect?

[Suki63]

After 30+ years of ra, dmard, painkillers etc, etc, I was placed on biologics(etanercept). 1st week as amazing. Virtually pain-free almost everywhere. 2nd, 3rd week the same. 4th week pain returns inside and out of elbows, hands not too bad. Spine flaring up. 5th week, spine shocking. All down leg and ankle blown up 2x normal size. Along with hands elbows etc. In other words from 4th week I've reverted back to how I was before biologic. Difference being at moment can still walk. My question is, what can I be reasonably be expecting? Is this as good as it gets. Would love to know other folks experience and thoughts. Hope you are all coping OK and many thanks for listening. Much appreciated. Suki63.

[AgedCrone]

Have you contacted your doctors

As is often mentioned here....if you don’t tell the rheumy team things aren’t going well..they will think you are happy with you meds.

Pick up the phone & ask for help.

[medway-lady]

It had more or less the same effect on me great for a couple of weeks then side effects but without doing anything to relieve the swelling and pain in my hands. I contacted RA team as I don't normally get side effects but this med does not suit me at all. Frankly I'd rather ache than not be able to taste anything, with sinus issues and a rotten headache. I can taste it like garlic crossed with iron fillings and chuck in a bit of cat urine all the time, even a drink of water tastes like it.

[Suki63 in reply to medway-lady]

Dear medway lady

Thanks for your reply. Funny you mentioned about the catpee. I was convinced about 3 weeks ago a cat had somehow got into my flat and died somewhere without me knowing (live alone). Convinced I could smell it, also fed up with eating me dinner and tasting nowt but cardboard 😝are you still on the same drug I don't think you said. I also got sinus probs and headaches. What did your team say to you? Who knows maybe I'll get out the shower one day and I'm Bobby ewing and it's all been a bad dream, and I'm married to pammie ewing and I'm an oil baron... If you can remember that😉. Take care

Suki63.

[medway-lady in reply to Suki63]

I remember Dallas and was in hospital having a baby when JR got shot. My husband only had 1 job to do record it needless to say he forgot. Anyway I've tried twice now with the Benapli and got onto RA team yesterday and am waiting to see what they say. I don't usually give up easily but this is foul and affects everyday life. Nothing works to get rid of it I've had a steroid nose spray a course of antibiotics and a break from the Benapali. Back on it the taste and smell returns. Also tried eating parsley, chewing gum drinking more everything I could think of or doctor recommended. Nothing works and its like eating garlic with everything. Its not done much either so might just be I'm resistant to it I suppose. The taste is making me feel sick and brushing teeth is very difficult as it seems to enhance the taste.

The locum GP thought it was acid reflux and that wasted a couple of weeks as I said but I don't have indigestion and so I saw regular GP who agreed taste was coming down not up from stomach. So hopefully the Rhumy gets back today or tomorrow as really no rush it'll last for a few days now and so nothing they can do.

[Silverpixie]

I had exactly the same with the first 2 biological drugs. CIMZIA was incredible for the first 4 weeks, almost miraculous. Then simponi-again 6 weeks relief and then back to square one. Rituximab infusions had absolutely no effect whatsoever. Then orencia which gave about 65% relief. My consultant thought she could do better and wasn't prepared to settle for that. My marriage had broken down and the constant pain and steroid injections were really affecting my mental health as well. I was down to less than 8st ( I'm 5 feet 7) and frankly a mess. I'd had what she called unremitting ra for 6 years. Then I had tocilizumab. Wow for me this stuff rocks! Two and a half years later ( unlike the others this took 3 months to work) I feel amazing. I was so scrawny and unfit I hired a personal trainer for 6 months and now work part time walk miles and do two advanced Pilates classes a week. I'm 9st 7 and look and feel much better. I hardly drink (I was diagnosed with autoimmune hepatitis at the same time as ra) and have not felt this well in years. This "journey" through the biological minefield took 7 horrible years. I'm 59. I hope my story gives you hope that things will get better. Go back to your ra team. Each biologic works on a different part of the inflammatory pathway they need to find the right one for you. All the best.

[Suki63]

Dear siverpixie

I'm so heartened to hear you are now eventually doing so well. Good on yer. My problem I think is partly me. What I mean is I'm struggling to know how I'm supposed to be. Am I supposed to be totally pain free? I took gold. Injections for 5 years and was getting along pretty OK. Had the odd flare which lasted max 1 week then went. I was prepared to put up with that. Not getting any younger either you see. Anyhow taken off gold. Took xrays, bloods etc and found to have tb. So 3 months of no treatment whatsoever. You can imagine the pain. Now I am where I am. I've talked to nurses. It's been hopeless. In my part of the world maybe the routine is different. Just to talk to nurses is an achievement and when I I've managed to, they just say you're due in June to see you're consultant. To use there words "he'll be on your case". Sorry to moan, but just don't know what to say when I do see him. I'm back to constant pain everyday, but can't go back to gold cos not available anymore. What I'm saying is the pain is not as severe as when I 1st took etanercept,when I couldn't get out of bed! Do I accept that or is there better future? From your story I believe I should have something to make my life better, and for that I thank you. Best wishes, all the best for the future.

Suki63