Do you remember an Australian member a long time ago, I think it was @MacMac, or maybe it was @Becstar, who went to a rheumatology prof who made her go through the same thing for, like, three months or something? The same “we need to see swollen joints, lots of 'em” thing, when to most of us here it was obvious that she just needed aggressive treatment PDQ?? It was really hard on her, but she toughed it out and in the end she got the biologic treatment she needed. That turned her disease – and her life – around. (And we don’t see her here nearly as often as we’d like to … boo hoo.)
And you’re right when you say blood work has nothing to do with it. Some docs haven’t read that memo, though. Either that or they don’t believe it. Something like 50% of us have CRP and/or ESR in the normal range.
I’ve been checking the NICE guidelines … they tend to be a few years old. But going by everything I know of at the moment, a UK patient with PsA would have to have pretty bad psoriasis to get a biologic without going through the other medications first.
Spinal involvement, if dx’d as AS, might help speed things up biologic-wise. But the protocols for AS are very clear that NSAIDs are the first line of attack. (I’ve clocked that the AS category is under review but I just don’t know if that has had any impact on protocols as yet over here).
What I see time & time again is rheumatology departments’ resistance to moving on from traditional DMARDs. I don’t believe it is always all about the individual rheumy, there are other pressures making them drag their feet. Even that most esteemed rheumy Dr R, (my Humira hero!), had me try Leflunomide for a while when I trucked up at his door having done both Mtx and Sulfasalazine, with whopping great knees that had been swollen for years.
I would love to hear of any UK PsA patients who have bypassed traditional DMARDs and found biologics through the dermatology back door due to ‘just’ active rather than really severe psoriasis. Anyone?
Not that I’m aware of Sybil. Most even with truly disabling PsA affecting a lot of their body ensuring significant disablement still it appears plod the DMARD route. I’m on a new UK only FB page and that’s what I see or rather hear.
I feel lucky that a) I was diagnosed fast, almost too fast for me and b) this far a DMARD actually works which doesn’t effect me side effects wise.
Hi @Seenie and all. It’s macmac here and yes that is what happened to me. Honestly my rheumy was and is very good but I just didn’t tick all the boxes required. I reacted to every old DMARD and never showed anything interesting or consistent in my bloods. Rheumy was so confident I had PsA but couldn’t tick the swollen joints boxes required for biologics. He prescribed prednisone and we waited. It was very very hard. I tracked my joints three times a day. And we waited. I reduced my work hours and waited. But six months later and after i realised my joints swell and deflate throughout the day, he was able to prescribe biologics. This has made a significant impact on my life. I still have chronic back and Achilles problems but no fatigue which makes the pain more managable. My psa has always been heavily enthesitis and tendon related and slippery so this dramatic road to biologics was not ideal, not preferable, but my only option. PS sorry I have been away, I am in the process of moving me and family interstate. I have been reading but not posting xxx
PPS i should add although back and Achilles not great, my joint pain in multiple other joints is down to incredibly managable levels and has disappeared in many…including no pain in my head!!!
Your symptoms sound very similar to mine. Joint pain but with minimal inflammation. Back and neck pain is continuous, and now chest pains have entered the picture.
I am interested to know how you coped with the pain when you came off the DMARD. I am fully dependent on cocodamol and Naproxen and if I am honest, they only take the edge off. I have had to call in sick this week, yesterday (Monday), I felt like I was hit by a bus and today, it feels like my hands have been through a paper mill, someone’s bashing at the base of my neck, and like I’m having a heart/angina attacks. All this and it’s only been 13 days without the methotrexate. My other half asked this morning quite innocently, ‘when are due to see your consultant’, I replied ‘mid-March’. He looked at me in horror, ‘you’ll be dead by then, I think you better go see our GP’. I think he’s right (for once), GP it is!
Gosh Nicole… I’m so sorry you are having to endure so much It does seem rather bizarre that you need to go through this to be approved for a biologic, sometimes the protocols we have to live with in are just plain crazy!!
I truely hope this gets you the meds that really help, and sooner rather than later!!!
I am wondering if you are able to contact your rheumy to let them know how bad it is getting… they may be able to get you in sooner for that follow up appt.?
It would seem that perhaps the Mtx was doing more than you thought… I have often wondered if I should keep taking Mtx as I wasn’t sure it was doing very much for me either (although I have been lucky and SE’s are not too much of an issue), reading your story has me thinking perhaps the Mtx is actually stopping this from getting worse, even if it doesn’t feel like I’m getting much by way of noteable benefit from it lol
All the best!! I do hope you don’t have to just put up with this for long!!! Hugs
I can’t inderstand the purpose of making you wait until March. I’d take Janson’s advice and call your rheumy or GP and let them know how bad it is. Could they at least put you back on MTX and, hopefully, if MTX doesn’t do enough, start you on a biologic sooner? Ugh, hands through a paper mill—that’s a good description of the crushing feeling in your hands.
Thanks for your advice. I plan on seeing today through and if there’s no improvement by tomorrow, I will be contacting the Rheumatology Advice/Emergency number I was given. If I don’t get any joy from them, then on to the GP. If no joy at the GP surgery then back to the consultant.
I don’t like being a nuisance patient, because sometimes I think it’s in my head and I just have to plod on. I know this isn’t right, but I can’t believe that this condition which I can’t see, just feel, can cause such pain and suffering. This makes me so frustrated at times, as I can’t do the things I use to do, like go on long walks, carry the shopping, drive long distances. I am sure you know what I mean.
I am so sorry for sounding so down. It isn’t the normal me, but today isn’t a great day ️
Hey Nicole, just a head’s up, advocating for yourself and asking for treatment when there is treatment available that isn’t being dispensed to you does NOT make you a nuisance patient, or demanding, or aggressive or any one of the many negative things that you might have floating in your head. It makes you a person with a chronic medical condition who is seeking a course of action to help improve her daily life. It makes you HUMAN!!
Nicole, I know exactly what you mean. I complain and “talk” a lot here, but when it comes to doctors and others I don’t say much. It’s really hard to tell a doctor about the constant nagging “pain”. To me, a lot of it wasn’t such terrible pain as it was discomfort and nagging yuck. Some of it, like neuropathy and severe joint pain, is easy to say my pain is sooooo bad I can’t take this anymore. Especially if it’s a 6 or above on the pain scale. But pain of 2 - 5 is the constant stuff that wears you down but you can keep going–yet at a slower pace most of the time–so it’s hard to really talk about it. I told my rheumy my fingers felt “fizzy”. He said, fizzy? It did also as time went on feel like they were being crushed–that’s why I liked your comment about your hands being through a paper mill!!! Very accurate!!!
Whatever, I guess it’s best to try to tell him about the pain, even if it’s not real bad when you go in…make a list, maybe write down how many hours each day you’re really bothered by it.
You don’t have to be sorry for sounding down here…if you can’t talk here about it, then who? We all understand and care! I hope you do get some positive answers soon, too!
Hi Nicole, I agree with others that maybe you should think about calling the rheumy for an earlier appointment. Even if they want you to stick to the current plan you have at least alerted them to how bad it is getting and I think this is very important knowledge for them to have. They have to know you are getting worse so they know it’s the right call to try biologics. Easy for me to say as I don’t know your rheumy and how supportive they are. I know for me realizing I actually had to let them know how painful it was was very helpful…before then I would minimise alot. I found using a PsA app to track joints throughout the day very empowering and validating as it showed me just how much joint and pain action was happening and convinced me I had to convince them.
I had to rely on prednisone, celebrex, and endep to get through . I also drank on the cusp of too much to manage the pain. The prednisone was the only med that helped but had side effects. I remained in pain and I found the neck and head pain very distressing. I also had to learn to rely on friends and family, give into fatigue and rest, and biggest of all I had to accept that my illness was real. I also worked on ‘how do i tell my story so my dr can understand the severity and feel justified in prescribing biologics?’ So this included letting them know how bad it was, how my mood was affected, how my capacity to work was affected etc. I sincerely hope you don’t have to wait 6 months. I wish I had a magic solution for you. Take care and become your own best advocate.
It does seem rather bizarre that you need to go through this to be approved for a biologic, sometimes the protocols we have to live with in are just plain crazy!!
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