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.

Ankylosing Spondylitis / Costchondritis /PlantarFasciitis / Sacroilliitis/ Enthesitis /Tendonitis / Sjogrens / Prolonged hormone induced migraine & bone-spur sufferer here!

(Am on a LOT of medication)

Tried Cosentyx which did absolutely nothing. No side effects apart from a swollen tongue which gave me little white very painful hard lumps under my tongue. I pursued the drug for about 8 months from memory with no positive effect at all.

The fear of the side effects massively put me off. I discussed it over and over again with my fantastic rheumatologist repeatedly, then with the nurses at that clinic, then with the physiotherapists within that clinic...you get the picture.

It took a lot of convincing for me to start, on the basis I have lost 7 family members to cancer and the biologic lowers your immunity. I was totally anti and VERY vocal about it. Their argument was that any concerns, symptoms, pain etc that came with taking it would be taken seriously, investigated and dealt with immediately without question or hesitation and that because I was already suffering with my pre-existing conditions, I needed help with those and a Biologic would help. The rheumatologist explained that the ANK SPOND/AxSpa was bad enough on its own so any other symptoms that came along as a side effect could then be treated as an extra, which to be honest DID put me off.

I also work with someone that also takes a Biologic and he spent a lot of time off work once starting it due to being wiped out with every bug going around.

After my DH joined me at a consultation, we agreed I should try the Benepali. You have to meet a strict criteria I believe to obtain it.i have been taking it now for almost 2 years and am absolutely dreading the day they stop it.

No symptoms and I’m a different person in relation to pain and mobility. I can walk better (apart from the hardened thickened tendons) but it’s the basics that are noticeable....I can roll over in bed at night, I can put my own shoes on, I can pull my trousers up now, I can pick a shopping basket up now....

My AS rheum appointments have gone from quarterly to once every 9 months.

Yes I currently have a chest infection but whose to say I wouldn’t have had that anyway?

I only have to call my GP with a query and BOOM, I’m having an x-ray, or I email the rheumatologist and RING RING, my they’re calling my mobile to get me in for an MRI or blood test if needed.

Mine get delivered whenever I request which is usually every 3 months & so far it’s been free of any hiccups. You can choose your own schedule. You have to be in to sign for them or you can give a designated name within your home address or designated name and address and they have to be stored in the fridge but taken out a little while before use. The sharps bin is taken away and replaced by the courier too.

Probably bored you to tears - sorry!

Spoon. Thanks for all the info. V useful.

How come you stayed on the first one so long even with side effects and no reduction in the AS? Did the medical team talk you into that? 8 months sounds like a long time with side effects.

Do you have other side effects such as high blood sugar, high blood pressure, muscle pain etc as in things you did not have before that are brought on by the drug?

I've been on humira for over 5 years and it changed my life.
I went from being housebound to swimming 50 to 100 lengths every day of an Olympic size pool .
Ok I had to take painkillers and my old joint damage still hurt but I did it.
No side effects for me at all.
Unlike the 6 previous drugs they'd tried that made me really unwell ( liver failure, kidney failure, hair falling out, mouth ulcers and vomiting thankfully all resolved within a few months of starting humira )
I'm not in the best of health at all.
I have a blood disorder, hemiplegic migraines, post thrombotic syndrome, hypertension, lots of nasty joint damage from psoriatic arthritis ( the reason I take humira ) I had a brain stem bleed and have been left in a mess because of that and now my neurologist thinks I have MS.
Every test points to yes but they failed 6 times to do my lumbar puncture because my spine is also damaged due to the psoriatic arthritis.
I'll need to go through that again in the new year to get the confirmation but my consultant has said it's a formality.
What side effects are you worried about?
Is it the increased cancer risk ?
For me I thought I had no quality of life, so I'd value quality of life with my primary age kids.
It wasn't and isn't something I think of.
Both of my kids are disabled, one severely so I just get on with it.
I'm 44 now and I have to say it's one of the best choices I made to start humira.
The pain from the constant psoriatic flare ups was just unbearable and was pushing me over the edge.
I've gone from being on a high dose morphine to taking a couple of 15 mg codiene a day .

Yes I catch every bug going and I've had chicken pox twice whilst on humira and shingles twice !
I didn't think that was possible but apparently if you are on any anti tnf you need antivirals urgently if you come into contact with anyone with either of the above and the antivirals are awful !
Is it worth it ? To me yes every time.

The mix of humira and mtx keeps my RA under control but is so bloody hard on the rest of me.
Just out of hospital from flu.....

Was kept on the Cosentyx because apparently it takes 3-4 months to start showing any benefits.

I have absolutely no side effects with this Benepali Etenercept. For me it literally it has been life-changing.

I do have blood tested quarterly but that’s because of other medication I am taking.

There is one last Biologic I could try if needed but that would be my last chance.

With this current one and the tendonitis/tendonopathy I have, they have said that if I need any more steroid injections I will have to stop the Benepali. I’d rather stop the Prednisone (steroid) and continue moving around like I do.

I also know of someone who’s takes Humira so will ask them for their opinion and get bac to you later.

Mzpumpkinpie. That sounds like a dramatic change! Are you not worried that the humira has caused your MS? Biologics have demyelination disorders (MS) listed as a side effect??

Chickenpox and shingles x 2 each. That sounds like a lot of time off work and time where you've not been able to look after your family. Yikes. And you still think this is worth it?

Ronald. That sounds hard. Don't know if you have DC? If you do, you must need a lot of help when you're ill because of the humira?

Spoonie. You mention tendinopathy .
Do you also happen to have enthesitis??
I have this pretty extensively (according to consultant who say is isn't tendinopathy.
Does you enthesitis go entirely with the benepali?

My enthesitis hurts way more than the sacroilitis to the point where it keeps me awake. Assuming it isn't tendinopathy which clearly isn't affected by Biologics.

This is all very useful information! Thanks so much.

My sacroilliitis has more or less been ‘cured’ by the Biologic. The over-riding pain is now more or less caused by the pain in the ankle. It’s a very sharp stabbing and throbbing. Feels like a straight knife is down the back that won’t allow me to bend or flex my ankle at all in any way, shape or form.

It stops me from sleeping and more or less keeps me awake for pretty much 20 hours a day.

The physio advised me to keep Naproxen levels maintained and to add Paracetamol into the mix, to use a crutch to bear the weight and then use a graduated physio programme. I also have an in-sole from physio for inside my shoes which helps.

The enthesitis is by no means helped by the biologic. If only it was. In fact I would go so far to say that because the biologic has worked so well in all other areas, it has highlighted to me the areas that are now not reacting to medication.

Hi Spoonie. I'm sorry to hear about the ankle. That sounds horrible.

That information was so helpful. I've really got a clear view of what it won't be able to do for me.

As it can't help with the enthesitis, it's not for me. I have enthesitis in 10 areas and as I said it hurts way more than the sacroilitis.

Anyone have enthesitis and found something which works?

Have you looked at Sulfasalazine? Has this been mentioned to you?

I’m on this as well. It’s a DMARD aimed at inflammation.

I asked my friend about the Humira but that’s stopped and she’s waiting to hear which Biologic her friend is now on as the alternative. As soon as I hear something, I’ll report back.

I’ve been on several Anti TNF and Biologics over the past 12 years and they have given me my life back. I have gone from being barely able to move due to RA to being able to do everything except run. I had one (can’t remember which) where I got lots of small skin infections where I bite the side of my finger but apart from that I have no side effects at all.
Good luck with it - I hope they work as well for you as they have for me.

I've just gone back on Humira after a 6 month break; it's absolutely changed my life. I'd been on it for 6 years before that. A very well respected rheumatologist told me recently that when biologics (and Humira in particular) were introduced, some people thought they were too good to be true but they have turned out to be miracle drugs. They are very well studied and there is a huge amount of research about them and side effects are very rare - even the ones which sound scary and are mentioned frequently have turned out not to be anywhere near as prevalent as expected. I have had absolutely zero side effects other than actually being able to get out of bed and go to the loo without help!

I have Ankykosing Spondylitis and started Simponi in 2011, took it very successfully for 7 years. No noticeable side effects and a big reduction in flare ups. Monthly self injection not difficult.
I switched to cimzia in 2018 in order to try get pregnant as it was the only one licensed for use during pregnancy. This was more painful to inject but no change in side effects. Unfortunately I was diagnosed with unrelated breast cancer in 2018 and had to stop all biologics as you know they are immune suppressants.
It is not an exaggeration to say it changed my life, the movement and certainty I regained was incredible.

I’m so sorry you’re all in so much pain - huge hugs
The ongoing march with it becomes a bit much as literally no one is interested.
I do have children and luckily a very lovely xh who helps when things get too much.
I’d recommend a good therapist- I found I had internalised a load of nonsense about being weak and a failure for having to rest or sit things out. I had 20 sessions altogether and they really got my head straight ( shamefully I’m a counselling psychologist but couldn’t help myself or identify the problem)
I hope you’re all enjoying good days

To be brutally honest Ronald, the ‘pretending to be ok’ is what’s killing me. It’s so much easier for everyone in my life for them if I just I’m ok thanks when actually all I want to shout is that I’m sick and tired of being sick and tired. But that’s a whole different thread.

OP...we all react differently to medication. I know of your history and your reactions, your past ‘professional’ healthcare for want of better terminology. But because we all react differently, is it worth considering trying some you have ruled out on what we have said? You have dismissed one because of my words only. I’m just one small person against so many more knowledgeable global practitioners on many levels.

I’m concerned you have put my words over and above what could help you. We ARE all different and what hasn’t helped me may be a game-changer for you.

Ronald. I'm sorry to hear that. That sounds hard. I do wish I had something useful to add.

Spoonie. I'm sorry your sick and tired. That's not nice.

I've not ruled it out because you or anyone of this thread had dismissed it or described side effects. I've ruled it out because I've been reading the manufacturer's research results along with a variety of other research papers.
The reality is that the side effects are serious and heavy duty. They appear to be played down by rheumatologists and I expect it to be because they simply have nothing else to offer us. Not their fault.

I wanted to hear direct personal experiences as well and it confirms the things I worry about as well as confirming that it's very unlikely to actually do anything useful for me apart from more than likely make me really unwell.

Enthesitis is major cause of pain for me and it looks like Biologics don't at actually work for it.

Furthermore according to the manufacturers testing and NICE, if your C Reactive Protein test is normal, you're unlikely to benefit from or see any improvement from Biologics or DMARDS. My C Reactive Protein is always normal on tests.

My ESR is on the top number of normal. Again if your ESR isn't quite high, you're unlikely to see an improvement from Biologics.

I'm not risking endless hospital stays, more pain, cancer, liver failure, kidney failure, MS etc for something which isn't likely to help.

That makes total sense, thankyou for taking the time to explain in the detail you have. I personally very much appreciate the information you have given.

It is so hard with science now & all the hidden information combined with what the various practitioners believe. Then throw into the mix that different practitioners believe in different meds and treatments....

Inflam arthritis here, possibly a side of effect of crohn’s, we’ve never been able to confirm the crohn’s diagnosis as I’ve been on the arthritis meds for nearly 20 years. My ESR and CRP rarely go up much at all but Humira changed my life; it’s given me nearly 9 years of solid remission, from barely able to walk and in constant pain to playing squash (and having 2 kids). Have had to come on and off the Humira a few times for unrelated surgery, which increases your chance of developing antibodies to it, which is what appears to have happened to me. Making the switch to Cimzia at the moment, which is much worse to inject but hopefully will give me another decade of having a mostly pain free functioning body. The side effects sounds scary but I’ve barely had any. I have low levels colds a lot in winter, but that was also true before starting biologics (when I was just on mtx). I’ve had the flu once since starting it and one or two chest infections, which considering I have 2 young germ covered children and regularly take public transport isn’t bad I think!! ;)

If you’re in awful pain and struggling and your specialists recommend the biologics, I’d give them a go. They have changed my life for the better so much, I’d be wheelchair bound without them at this point. Instead I am active, have kids, an allotment and play sport. They have been miraculous for me. You can always stop them if they don’t work for you.

I have been on adalimumab for 4 months for Psoriatic Arthritis. The impact on my symptoms has been extraordinary - my rheumatologist who I saw last week said that she’d consider my disease inactive currently. Other than pain at injection I have had no side effects. I have had a cold, but it passed in the same way any cold I’ve had previously has passed.

I had Etanercept (Benepali) for a short time but had to stop it due to recurrent chest infections. I also had terrible nasal congestion and consequent sinusitis and deafness. It seemed like a generalised respiratory mucositis/mucosal streaming. Very unpleasant.

My rheumatologist wants me to try Otezla (apremiast), but the side effects bother me. Has anyone had this?

*Apremilast

Rumboogie That is VERY interesting. I was literally about to call the GP surgery when they open at 2pm to talk to the nurse about blocked sinus/ear issues as I assumed it was seasonal-related. Wow - what an eye-opener. Thankyou so much. Interesting as I mentioned up-thread this week is a write-off as I’m currently off sick with a chest infection and am on Benepali.

@Sunmoonearth

Enthesitis is major cause of pain for me and it looks like Biologics don't at actually work for it.

Furthermore according to the manufacturers testing and NICE, if your C Reactive Protein test is normal, you're unlikely to benefit from or see any improvement from Biologics or DMARDS

This is really interesting. Have you got references, or can you post links?

Like you I have mostly enthesitis with normal CRP. I have been on Sulphasalazine for some years and it is difficult to know if is doing anything. I was also on methotrexate for years but had constant trouble with it and eventually had to stop. My rheumatologist wants me to try another biologic, but no point if unlikely to work, given the possible side effects.

I have the additional problem of sacroiliitis, but also very severe osteoarthritis of the spine secondary to a spinal fusion.

8@Spoonie22*

To be brutally honest Ronald, the ‘pretending to be ok’ is what’s killing me. It’s so much easier for everyone in my life for them if I just I’m ok thanks when actually all I want to shout is that I’m sick and tired of being sick and tired

I really sympathise with this. I think that it is often very difficult for people to understand this sort of condition, and especially how utterly exhausted it can make you feel.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3582305/

It's a long but fairly illuminating.

You also need to read the full 200 page NICE on AxSpa.

www.nice.org.uk/guidance/QS170

Another fun read.
www.io.nihr.ac.uk/wp-content/uploads/2018/02/13008-Secukinumab-for-axial-spondyloarthritis-JAN18-V1.0-NON-CONF.pdf

More later. Sorry can't do clicky links

Sorry this is the full NICE

www.nice.org.uk/guidance/ng65