Anti TNF & Biologics - any experiences?

[Sunmoonearth]

Hi
I've been diagnosed with non radiographic axial spondyloarthritis.

The Consultant Rheumatologist I saw is recommending treatment with Biologics ie anti TNF.

Any experiences? The side effects sound scary as hell and worse than those of my condition.

I am due to see the Consultant again but it looks like after Xmas given I need another mri first and it takes a while to turn around the imaging.

I am wondering about the scary side effects. It's all very well reading the stuff online from NICE and manufacturers. But I'm much more keen to hear from those who are on it, have tried it and perhaps have tried more than one.

Doesn't matter if you share my condition or take it for something else. Just keen to hear your experience. Not just on whether it was effective but also actual side effects (ie sometimes your condition is so bad you may find side effects not an issue but I'd like to hear about them!).

Also keen to hear from anyone who tried it and were unable to continue due to side effects.

And clearly very keen to hear from anyone with AxSpa who had good results

I sort want the good, bad and the ugly.

These are really interesting. I upped my HRT dose this week (the one and only thing I could get from the GP) and it has helped. After 3 days on new higher patch I move more easily and much less achy.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5590166/

www.rheumatologynetwork.com/spondyloarthritis-suppressed-estrogen

And this is interesting from a female perspective.

onlinelibrary.wiley.com/doi/pdf/10.1002/art.23321

And this about side effects and deaths.

www.google.co.uk/amp/s/amp.jsonline.com/amp/1206103001

I still can't find anything useful in studies about treating enthesitis. Annoying. The only things I can find point to NSAIDS giving the most relief. Which is what i found.

Any of you try Etoricoxib? I did. Sadly side effects were too bad but it took away the enthesitis pain complete. If you've not already tried it perhaps it's worth a go as you may not have the same side effects I did.

This is really crappy isn't it?

After your post last night I noticed my Etoricoxib prescription packet last night from which I stopped taking was dated 2017. For some reason I chose to keep the pack.

I really should have kept a spreadsheet as to why I was prescribed meds and why I stopped taking them.

I am such an idiot.

Thankyou for the links.

I have my AS rheum appointment a week today so will go armed with more information this time.

Spoonie.

It's my understanding that you can take NSAID along with Biologics/DMARD.

Perhaps you could try the Etoricoxib again? I'm gutted that the side effects were awful and the super high blood pressure part a bit dangerous because it worked for the AxSpa and enthesitis.

Just read through all of the articles and the one in connection with the biologic is incredibly scary.

I know new meds are always being introduced- when did you last try the Etoricoxib, Sunmoonearth? Wondering if there’s a new alternative for you.

Spoonie. They should have informed you of those risks when they asked you whether you wanted Biologics!! Doctors are not to be trusted.

I tried Etoricoxib 3 months ago. This one is the "new" cox2 inhibitor.

There are a whole load of NSAIDs I've not tried so I am planning to work my way through all of them.

I was warned of lower immunity but not to the degree that is mentioned in these articles. Having put 2 and 2 together, I am now sitting here in tears petrified. I basically feel I have a choice of whether I put up with these side effects of blocked ears/ phlegmmy chest/ constant tooth and chest infections OR the inability to dress myself and walk independently like I currently do now (which is the first time in 16 years)

When are you next seeing your consultant?

Spoonie.
This was the point the consultant i saw made to me. He is willing to hand the treatment out but said I needed to research very carefully to see if I wanted Biologics or not. He said he couldn't tell me what to choose. He said it was easy for him to gloss over the side effects so I'd have to make my own mind up.

As the main source of pain is enthesitis and the sacroiliac pain is controlled with prescription nsaid and painkillers, and the enthesitis isn't helped by the Biologics anyway, I've had a really easy decision.

If you are taking Biologics because you couldn't even get out of bed or dress yourself or you were housebound, this is really tricky.

It's about the risks versus benefits. For you the risk profile is very different because your benefit profile is absolutely huge!! For me I'd be better off putting up with minor side effects from an NSAID and still have some pain.

If the difference is being able to get out of bed and get dressed (ie being able to have a life), clearly risks will be worthwhile.

I'm really sorry that I've upset you. And I'm so sorry that you were not properly informed by the doctors who handed this out to you. How are you supposed to make up your mind if they don't give you facts.

Being informed is important. And reading the various studies, manufacturers info etc will also help you identify any side effects as they happen in case you need to switch to a different product which may work better for you.

Spoonie.

My insurance have stopped paying now that they've seen the diagnosis.

The GP finally made a referral to NHS rheumatology but I'll have to wait months.

There has been a whole other debarcle this week about the GP. I've had 3 face to face appointments and 4 telephone consultations where he told me he can't prescribe NSAIDS. Said he couldn't and wasn't allowed to do this.

His suggestion for pain relief while I wait several months, was to pay the consultant £175 so that the consultant could write to him and tell him what to prescribe.

I emailed the consultants secretary who asked the consultant and emailed me back saying it was absolutely the GPs job to prescribe NSAIDs.

So he lied to me about it. He even said this in front of the lady from the CCG who came along to one of my appointments.

So now I'm complaining. To literally everyone.

An hour after I saw the practise manager to tell her what had been going on and to ask her to move me to a different GP and that I didn't want the current GP for obvious reasons. The Gp phones me! Totally inappropriate! Unbelievable really. They clearly have no control over this man.

I had no side effects with Humira -
Made a huge difference to my energy levels. I felt normal for the first time in a long time.

I’m due to start cimzia soon. Curious to know why it’s worse to inject

Spoonie. See what stinky says. You may just need a change of Biologics?