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Living with Psoriatic Arthritis (PsA)

When do I qualify for biologics?


#1

I was diagnosed with PsA a year ago this month (unhappy anniversary!) and so far Ive tried methotrexate injections (triggered asthma attacks), prednisone (gave me terrible mood swings), and a combination of sulfasalazine + hydroxychloriquine, which worked great for about three months. Then just over a month ago I started having a major flare. I was given a steroid injection that did absolutely nothing, so I thought now I’d finally be given a biologic.

Nope. My rheumy has reduced the sulfasalazine to 4 tablets a day, kept the hydroxychloriquine the same, and added 10mg of Leflunomide.

I get the NHS is doing the best it can but do I seriously have to try every single DMARD before they finally give me a biologic?

Sorry to moan. I’m just feeling crappy and after having a couple of months of feeling pretty well and getting back to normal, it smarts to have it snatched away again, and to know I have another couple of months ahead of waiting to see if yet another DMARD is going to do anything.

How long has it taken for others to get to the biologics stage?


#2

Biologics come with a host of issues in and of themselves, the two biggest issues are that most biologic drugs have the potential to cause allergic hypersensitivity reactions and biologic drugs that are used for rheumatoid arthritis, psoriasis and other immune related disorders suppress the immune system and increase the risk of infections.

You could very easily be exchanging the problems of PsA for more serious infections or cancers by using a biologic so caution tends to be practice with this category. With that in mind I would say it would be a good idea to run through all other treatment proctols before moving to biologics. I’m a big fan of “low and slow” when using medications for chronic conditions. You don’t want to out pace your diease and run out of treatments if you can avoid it.

Also, biologics have only been around in semi-common use for about 15 years, side effects are still being discovered and there’s no long-term use information about then since they simply haven’t been around long enough to have actual long-term use information available.

azurelle


#3

The biologics suppress a very specific part of the immune system. Most people do perfectly well on biologics. As an example, last year my daughter and husband had the flu (yes, we all got flu shots). Did I get sick? No. Do I get the stomach bugs that occasionally run through my house? No.

The only thing that I find that I need to be careful with are infections on my hands. I’ve been on Enbrel for almost 5 years now.


#4

I’m with Stoney. I know it’s a bit off-topic, but I also wanted to pile in and comment that biologics do have risks - but so does every medication. It is entirely up to you and your Rheumy what direction to go in, and biologics have had enormous success for many who don’t respond well to traditional DMARDs, which is much of the PsA population, so the risks should be weighed with the potential benefits, as for any other medicine.

I say this as someone who got a rare, perplexing, side effect from a biologic, that had a significant impact on my life for nearly two years, till we figured out it was from the biologic. I still thank the biologics for changing my life for the better, and am now sitting in a field camp in the middle of the Australian bush, all thanks to the biologic (a different one) I’m on now.

So, to steer the thread back to your original question, whilst I’m in Australia, the systems are pretty similar and I’d think about a year would be well long enough, but there are lots of criteria for how it’s all done. Perhaps @Sybil or @Poo_therapy could give you a bit more info?


#5

My take on this is that raging inflammation from PsA is a serious health risk. Those of us who report feeling ‘half dead’ as a result of severe PsA aren’t joking. And currently biologics are the gold standard treatment.
@majorminor, do you meet the NICE criteria which apply everywhere in the UK, i.e. (mainly) 3 or more swollen / tender joints that have not responded to traditional DMARDs?
If ‘yes’ then progression to biologics should happen soon. NICE ‘only’ require failure of 2 trad DMARDs. However you may need to push for this and a few more months of waiting, if unavoidable, may well be worth it. Rheumys do seem to be under pressure to exhaust rather more options than NICE recommends and most of us here seem to wait longer than we’d like. There is a lot of doubt about whether trad DMARDs slow disease progression & therefore protect joints - and that’s the biggie, too long a delay may jeopardise joints.
Can’t easily insert a link, travelling at the mo, can you google NICE guidelines for treatment of PsA, or search function here might bring them up.
Oh, & to answer your question, took me 2 years but that was too long.


#6

Hi @majorminor,

What Sybil said, is as always, perfectly correct, NICE doesn’t fund biologics without the failing of the two DMARDs plus the three swollen joint count.

Now by my reckoning you’ve already ‘failed’ mxt because it triggered asthma. I ‘failed’ mxt as the side effects left me unable to function. I wouldn’t try hydroyxcloriquine as I only focus properly out of one eye and the potential eye issues with that one just terrified me.

Like you I did just marvellous on sulfasalazine at max dose of 6 tablets a day for around 6 or 7 months. And then it just stopped. I wasn’t asked to try Leflunomide and would have probably refused because whilst I’m happy to only drink a little alcohol, I’m not happy to have just no alcohol. And with that one it is ‘no’ alcohol at all.

So really you’ve already ‘failed’ three DMARDs then, haven’t you? I only ever failed just two.

When I finally got prescribed biologics - it took me a year and 3 months - I was told I had 6 swollen joints and 39 tender ones out of the 68 score they do. Incidentally I spent a year before that following diagnosis stupidly taking no drugs too.

So I’d be asking your rheumy to let you know your joint score if it’s not in your letters already and go from there, having looked up the NICE website yourself. ‘Going from there’ incidentally means you have to tell your rheumy that you disagree with his proposed treatment plan and why ask him or her to change their mind. Or show you the evidence that in your particular case, this approach is worthwhile. I’m afraid even with a really good doctor, you still have to be your own advocate too.

A word of further caution though. I was prescribed Benepali (it’s a biosimilar to Enbrel and consequently what the NHS now uses across the board) on 1 June, it took until 10 July to actually get it.I did seriously brilliant on it initially. People were telling me how much better I was walking. In the 4th week I had to skip a dose due to cracking a tooth and having to get it removed. And it hasn’t worked for me since.

I went back in October (12 weeks since I started it) and was told to keep trying it for another 12 weeks. I had other issues with that appointment too, so I just lost my patience really, wrote a strong letter of ‘complaint’ and we’re giving the Benepali till the end of November to make an improvement and if there’s none then I’ll be changing to a different biologic. But of course there’s no guarantee my body will like that one either.

So you see even when you get to biologics, there’s still a risk it might not help either. But certainly getting there can help hugely.


#7

Thank you for all the replies. The main reason I was asking is because most people I’ve spoken to have said biologics have a higher efficacy rate, and while I’m aware that they come with risks, as @Jen75 says, so does every medication. The hydroxychloroquine I’m currently taking can do nasty things with your eyes, so can the Leflunomide they now have me on, and all these drugs leave you susceptible to liver problems and prone to infections.

I just figure that I’m already at risk, so I’m prepared to take a little more risk if it means a better quality of life.

@Sybil @Poo_therapy I’ve taken a look at the NICE criteria and gone through my letters from my current rheumy - who replaced my previous rheumy after he left the hospital. My appointments with the new one have all been very rushed. My last appointment a couple weeks ago, she only checked my fingers, not even my wrists, feet or knees, where I also have problems, and pretty much rushed me out of the room while telling me she was adding leflunomide into the mix, and that she was making an appointment for me to see an eye specialist - but without saying why. I was feeling so unwell and exhausted that day, that I was too flustered to stop and question her. As it was, she left a voicemail on my phone ten minutes later because she’d forgotten to tell me that I needed to pick up the leflunomide from the hospital pharmacy.

In the follow up letter she said I have 11 tender/swollen joints and a DAS of 3.74, I checked and the NICE criteria needs a score of 5. Then I looked back at previous letters. When I was doing well on Sulfasalazine, the same rheumy wrote that the PsA was going into remission - but a month later it was clear that it wasn’t. The letter before that she identified 3 tender/swollen joints (again without checking my feet or knees) with a DAS of 3.38.

I’m not happy about taking the Leflunomide, because it’s another DMARD that can complicate things where my asthma is concerned. But I’m taking it for now.

Maybe I’m being over eager to get onto biologics, I don’t know. But I know my body, and I know how crappy I feel. Most days my fingers are red and swollen and I have to use dictation software so I can still work without causing further pain. My feet seize up at night. I’m tired all the time…

Early next year, I’m relocating from London to Somerset, so I know that’s going to further complicate things because I’ll need to find a new hospital and a new rheumy. But it would be nice to at least have gotten somewhere closer to feeling even a little better.


#8

Well if she’s not even examining you fully, the joint score just can’t be correct, can it? So obviously your DAS score isn’t valid either. Also she should be distinguishing between which joints are actually swollen and which are just tender, versus which are just fine. I don’t get a DAS score, so obviously that didn’t matter for the prescription of biologics in any event. I get the joint count out of 68, a PSAI score for skin psoriasis (mine isn’t there anymore as I haven’t had active psoriasis for decades) and a global assessment done by both the patient and physician showing what each of us thinks.

A proper physical examination should actually start at your head and work its way down with attention to your jaws, clavicals, shoulders elbows, wrists, every single finger joint, your hips knees ankles and every single toe joint. It should check for things like tennis/golfers elbow and issues with your Achilles tendons too. Both your fingernails and toenails should also be checked.

My issue with my appointment in October was due to an inept physical examination by a nurse which told my rheumy (a different one to the one I’ve seen previously) that I was better when it was clear to me I wasn’t given I now had hip problems (new to me) and left foot problems (also new to me). And it was that that made me lose my patience and write my letter. My experience at this hospital which is incidentally the RNHRD in Bath, (a centre of excellence for PsA) up to then had been remarkably excellent. The response to my letter made me cry, it was so abjectly apologetic. So I remain impressed.

I live in Kent but make the effort to travel there. The NHS allows me to be treated there. You’re going to Somerset, which is far nearer to Bath than Kent, I think you might have an excellent chance of being treated there, should you wish.

Each of makes our own decisions about what meds to take and indeed what to do when we feel things are going wrong. If I was in your shoes right now, I’d be making a complaint and holding fire on adding in new meds until you were at least properly and fully examined by someone who is competent.

I’m sad to say it’s down to the patient far too often within the NHS to make it work for them. It’s a fabulous service and we’re incredibly lucky to have it but, it’s certainly got its challenges and issues as we all know. So I’m quite a demanding patient (nicely) and just doggedly persistent. I let nothing go. I’m sure those treating me ‘sigh’ something rotten sometimes when they’ve got to deal with me. But it’s only me living my life so I’m of the view it’s consequently down to me to ensure I understand my treatment and further that those treating me do their very best. And if not I pull them up hard. It’s the only way I can get on with it. I also research as much as possible so I can understand as much as possible. And I question and probe. And if I don’t get to ask all my questions at the consultation, I write an email or letter after asking them. I’ve probably got ‘nightmare patient’ written all over my notes but I truly don’t care.

What I do care about is getting the best treatment I can from the best people I can access. And there’s excellent rheumys, perfectly good rheumys and utterly awful rheumys all employed within the NHS. Get yourself an excellent one as quick as you can.

As you know this disease just keeps on giving if it’s got a mind to, and if I was feeling this,

my poor rheumy would hear me ‘shouting’ exceptionally loudly all the way from Kent that I wouldn’t need to even write the letter.

I hope this helps.


#9

Ok, your reply has just made me feel a hundred times more convinced I have a crappy rheumy. I’ve never had a full examination like the one you’ve described. I’ve had my hands examined and they’ve been x-rayed and I’ve had an ultrasound (which picked up the joint damage in my wrists and fingers). My original rheumy also thought I had gout in my feet, which also runs in my family, but he left before I started any kind of treatment for PsA.

After talking to you I’m now realising I’ve been just going along with whatever the new rheumy says, despite feeling dissatisfied and unsure - and to be honest, not very well cared for - and I know that stems a lot from a previous bad experience where my old GP made me feel like I was making it all up and repeatedly told me there was nothing wrong with my body - even when my hands were swelling in front of him. I didn’t stop then and I got a second opinion - which ultimately led to my referral to rheumatology and my diagnosis.

So now I’m questioning why I’m not doing anything about my current situation.

I guess I’m still learning about this disease and still trying to figure out what’s going on with my body. It still feels so new to me and completely overwhelming, (with a lot of ‘I’m only 44!’ thrown in for good measure). But from what you’ve described, it sounds like I definitely need to step up and say something. Sooner rather than later.

Thanks @Poo_therapy. Sometimes it takes hearing it from someone else to make sense of it all.


#10

Your rheumy’s use of DAS is a little strange, I don’t think that would inspire my confidence. You mention it in relation to NICE guidelines too, but as I recall it is not used by NICE in relation to PsA. It is a measure of disease activity for rheumatoid athritis. And fwiw, NICE criteria for biologics are a little more stringent for RA.
It is difficult to qualify for bios without persistently swollen joints. How many of yours fall into that category? Arm yourself with the NICE guidelines, though not wordy it’s worth reading them very carefully to anticipate all possible interpretations. As @Poo_therapy says, you have ‘failed’ enough DMARDs so it’s about having a very clear discussion with your rheumy, old or new. If they really don’t think you need bios at this point then they should explain their thinking.

And if it doesn’t add up, you move on. I did … I had to wait 6 &%£ing months to see a new rheumy in a different hospital but it was one of the best things I’ve ever done. He wanted to know why I’d changed, I showed him my long-term swollen knees … all went well from there on!


#11

Sybil says just what I say. Although she’s a far nicer person than me, of that I’ve no doubt:grinning: I’m a totally grumpy lawyer who growls mostly to anyone saying ‘what’s your evidence for that?’ before even entertaining them. More so since getting PsA.

Like Sybil, I moved on from my initial rheumy, who diagnosed me fine, but who had zilch interest in PsA and who also never examined me coherently. Thanks to this forum, actually. This forum took it upon themselves to educate me, even if I was nearly impossible then. I probably didn’t help him much at the time either. And it took me a whole ridiculous year to emotionally ‘move’ on too. But I’m glad I finally ‘got’ it. Again thanks to this forum. Moving counties also doesn’t help as Sybil will also say. But hopefully the one you’re moving to should help. Ask to be seen by Dr Korendowych. First at least.

@majorminor for your job pretty like my present one, you need fingers to work typing and your eyes to read screens. Yours being a whole lot more creative, than ever I could be. Enable both and protect both. I’m horrified you’re already using dictation software. Initially my hands were horribly affected. I could still type - oddly - but I couldn’t pull up a zip, close a bra (not your issue) or open a sachet of anything or use a knife or fork coherently or cut up my food. And they hurt awfully anyhow. I can do all of those things now painfree more because my PsA then settled a little more elsewhere. But the knuckes on my right hand (I’m lefthanded) remain swollen since, And for now I’ve dodged the worst of Dupretryns which makes your fingers curl inwards.I’ve just got lumps on my palm instead for now. And I’m so grateful. So grateful. I can’t earn my living unless I can type and read a screeen.

This disease and its potential consequences is awful. It is just overwhelming as you describe. At the beginning even when coherently and quickly diagnosed as I was, it put me to bed for two weeks as I simply just couldn’t cope. More with what it is than how it made me feel then. Even though that was pretty grim then. But I’m Irish (although living in the UK since 1989) and I’m horribly emotional. None of that helps in situations like that. It helps later in making me a nice but ‘nightmare’ patient.

You’ve ‘got this’ now, you just know you have. And Sybil is also totally right on the ‘DAS’ issue too. Hence the reason no one has ever given me a DAS score, despite being RF positive.

Again hope this helps. Incidentally ‘being only 44’ makes not an ounce of difference either. People get this disease as children and all the way up. This is not an age related disease. So it’s a bonus of sorts that you’re only 44. Not a great bonus but a bonus nonetheless. I got this aged 53 nearly 54.That’s a bonus in some ways as it makes me a questioning patient, still, always, thankfully. Older, I might have not been so questioning, who knows. Undiagnosed for years in addition, (as so many are) then really who knows what I might be now.

Hugs as I guess you might need some. :hugs:


#12

@Sybil At my last check up, the rheumy noted I had 1 swollen and 11 tender, but again, she only checked my fingers again, not my wrists, knees or feet. I’m seeing her again early next month, so I’m going to lay it all on the line with her. And I’m leaving London in February, so I’ll be needing to find a new - and hopefully much better - rheumy.

@Poo_therapy Thanks for the hugs - much appreciated. And yes, you’re absolutely right- hands and eyes, enable and protect. Thanks so much for giving me Dr Korendowych’s name. I’m already learning so much from this forum. Now I need to learn to step up and take control of this situation.

All the best to you both.


#13

The move could be a blessing in disguise - fresh start rheumy-wise, no explanations required.
Are you going to ask to be referred to RNHRD? Wherever you go, a preliminary private appointment with the rheumy you’ll see under the NHS can be a great investment. And I think the sooner, the better. There’s the cost & possibly the effort of travel, but at this ‘seeking’ stage anything you can do to get care & treatment sorted is worth it.


#14

Yes I’m definitely going to ask for a referral to RNHRD. I’d never even heard of it until discovering this group. But I’ll be living pretty close to Bath once I move, so it makes complete sense to ask to be referred there. As for a preliminary private appointment - is that something I can I set up myself or would I have to go through a GP?


#15

You can do it yourself but the rheumy will usually ask for a GP referral letter anyway. Phone your chosen hospital and ask what they require and then you can set up it correctly. I went to the RNHRD via the NHS and a GP referral (wait time was 12 weeks but that was early 2017) others do it via a private consultation first and then sort out the NHS aspect. And I so agree with Sybil about just getting on with it too.

Best of luck!