I’m new here I haven’t done a proper introduction yet, because I have a burning question - is anyone NOT on biologics for PsA and being treated successfully?
I ask this as I have been on MTX and LEF for 4 months now, (diagnosed June 16) with some improvement. I also dont have psoriasis (yet…) I know that rheumy will apply for biologics once 6 months is up IF I qualify. My feet/ankles are the worst part as I limp quite badly. I have young kids and am not really that old myself so I’m kind of reluctant to accept not being able to walk properly, or more than a few hundred metres!
I’m in Australia where the hoops to jump are many and the criteria strict.
I suppose I don’t really want to keep hoping that the mtx and leflunomide will help if it probably isnt going to? Although I know that mtx does help somewhat, as I’ve recently had to stop it for a few weeks due to an ulcerated throat (very very sore) and my feet are much worse and now I have new pain and stiffness in my thumbs (never was affected there before?)
It seems anecdotally anyway, that the only thing that works really effectively though, with few side effects for PsA, is biologics.
Is this your experience too? Thanks in advance, from freezing cold Australia, where Spring has gone into hiding.
Hi Koala, I am sending this message from freezing Spring -less Australia too Good question that you have asked. I honestly can’t be that helpful but thought I would share in the hope that it has some benefit to you. I am currently back in ‘the gap’ which I am sure you will read about on this site. I am in the gap because I have had side effects to DMARDS such as LEF and sulasalazine and MTX. Honestly MTX worked the best but side effects too significant. Without the side effects i think I would have stayed on it. It didnt ‘fix’ everything but it certainly helped a huge amount. In Aust it is unusual to take MTX via subcutaneous injection but after my reactions to the oral meds I requested this and honestly it was so much better with less side effects than anything else. So maybe keep that in mind if mtx is working but causing gastro esophageal problems. I never thought I could inject myself but honestly it gets easy. Good luck
Thanks for your response! It’s very helpful. I asked GP about injectable mtx the other day but he was not really up with the latest - said to ask at my next specialist appt.
I’ve had a sore throat since the very beginning of mtx but the throat sores are new. I have been finding the nausea and flat feeling 48 hours after mtx getting worse, and have had spikes in LFT’s as well. At the moment I am waiting for a call from him to see what he thinks as I havent had the mtx for a few weeks and suffering quite a bit now.
I wouldnt have an issue with injecting as it doesnt bother me. Hopefully that may be an option for me.
Hope you are able to get something that works for you; are the biological dmards on the horizon for you?
Hi Koala, just wanted to say hello & welcome! I’m another one who found that Mtx helped but didn’t help enough, as I think you know!
I don’t think significant improvement does constitute a miracle, though it can begin to seem like that when you’re struggling for many months. As is human nature I started to take the improvement I got from humira for granted, though when moving at all was so difficult I could not have imagined it.
I wouldn’t mind betting that injectable Mtx could help you a bit without jeopardising your chances of starting a biologic, but that is speculation I know.
Great discussion you’ve started, fingers crossed for you.
Good luck. I forrgot to write that I also had two injections in 24 hr periid which also reduced the side effects on the mtx. I am stuck in Aust limbo at the moment re biologics. Long story. Hopefully this will change soon.
Hi MacMac, limbo eh? Doesn’t sound good at all. I’d be interested in the story if you can bear to recount it, as would Aussie members I expect. However I can understand that you might not want to go into it all at the moment. Good luck, hope change is a comin’.
Thanks MacMac. No that doesn’t sound good. I don’t think doctors realise how much we suffer.
I spoke to my rheumy last night. He doesnt think my throat is ulcers (no one could see right down into it) I’ve got another 2 weeks off the mtx and then if no better I’ve got to go to ENT specialist. It’s been 2 weeks already and no better. My left side of face feels swollen like I’ve been to dentist, but its not, just feels big.
In the meantime, I’m getting stiffer and more swollen and my hands are hurting a lot, cant walk properly…
Koala I hope they sort this soon…it’s such a damn process we go through to find what helps sometimes and trying to work out what’s connected with the condition and what isn’t. Hope you feel better soon.
Hi Sybil. Limbo is really just another version of ‘the gap’ I guess but with the added dimension of the Aust rules for biologics. My not so unique story is making it hard to get biologics. I would have been happy to not need them. Also I like the Aust health care system and the beliefs that inform it, but there are always some who don’t fit in and, at the moment, that is me.
At the risk of boring everyone and hyjacking this thread (sorry Koala), my updated story is…this year marks 10 years since I started having symptoms… I remain with a tentative diagnosis of PsA which I have had for approx 4 years. My Rheumy is good but diagnosis remains tentative because there is no clear diagnosis of psoriasis. While I fit all other clinical indicators I am also mostly seronegative. I am lucky enough not to have significant joint damage but I get a lot of ligament and tendon involement, and nerve stuff too. Things are progressing too. There is no longer a day where I experience no pain although I still would not describe it as severe pain it is getting higher. I am lucky cos it’s not severe but it is chronic and wearing as we all know.
The last 12 months I have cycled through all the non biologic DMARDS available in Aust…while they have helped to some extent, I had to stop them because of signifcant side effects with two and I stopped mtx because I kept getting infections (TMI…including chronic irritation of the urinary tract . )
My story is very much like other members here so I know this will sound familiar. All normal gap stuff right? The Aust limbo is about the criteria for biologics for PsA. The criteria, or points needed is very high and my not so unique combination of seronegative, no clear diagnosis of psoriasis, and no significant joint damage means I am yet to make the threshold. A rheumy also has to observe over twenty swollen joints. Add to this that I have to be stable for atleast 6 weeks on a non biologic DMARD and continue to take it while on biologic…which I cannot do because of the side effects. So basically I am a diagnostic dilemma.
Rheumy is in a dilemma cos he trusts his clinical judgment, which I do too. He is concerned that we will have to wait for joint damage before I will qualify but obviously neither of us want that! I am in a dilemma cos everything I try I seem to react to, including fish oil, tumeric etc… I am also in a dilemma cos others are encouraging me to shop for a dr who is willing to sign-off anyway but I am not sure about tjis. Currently I am using a RA tracker on my phone to daily monitor…a good day is about 14 joints and a bad day is around 30. A good day is a VAS of 2 or 3 and a bad is 8. I am having two flares a month. Using celebrex, panadol osteo and wine for relief and struggling with overwhelm. Somehow though I keep doing life, family friends and work…all of which I love…and am building motivation to try and rid myself of the 12kgs I have put on during this medication adventure.
Sybil i bet you are regretting you asked. Sorry for such a long rambling reply. I am having a low day.
…to ligthen things up here is a funny anecdote…on Sunday I had this very strange red indent on the side of one of my fingers. I noticed similar on an adjacent finger but no redness. It was worrying me as my fingers looked weired and elongated and not their normal shape. I showed my partner and he chuckled and said…“that’s what your fingers look like when they aren’t swollen”. I have had this low grade constant swelling in a few fingers (sausage digits) for months now I had forgotten what they used to look like…stressed out by normal haha .
No problems with hijacking MacMac.
Wow, you have been through it, 10 years is a long time! I have worked out I’ve been having symptoms for about 4 years now, with the big flare in March this year that led me to diagnosis.
I dont have psoriasis either! Only a weird fungusy nail, which “could” be related? Plus the classic sausage toes on both feet. My diagnosis is Probable PsA.
I know how you feel about getting “signed - off” I often think to myself - Be careful what you wish for… However as I am young(ish!) and have young kids I am more inclined to push for the most effective treatment that I can get, for their sake too??
Have you seen the guidelines for Initial Application for Biologics? You can also have 4 large joints affected instead of 20 small? Plus ESR over 25 or CRP over 15 I think.
With regard to having to be stable on a non bio dmard, I have a friend whose husband has RA, takes Simponi, and the rules are that you need to take mtx too. He fills a script for it, but doesnt take it … Chemist and Rheumy both know this.
lol at normal being alarming - I often look at my (few) non affected toes and they look so weird and skinny!!!
Wishing you all the best. I’m in the West just FYI.
Oh MacMac … just sorry it’s like this, how frustrating. As Koala says, your story is hardly hijacking, on the contrary it seems very relevant.
Those guidelines sound complex. Some of us UK people have in the past discussed whether or not the guidelines here allow for patients with PsA to try a second biologic if necessary … one person has successfully argued for a new one, seems it all hangs on how a flow chart is interpreted. These things are definitely worth investigating minutely as no doubt you know.
Re. your nail Koala, though I’m probably going into the long grass here, my PsA was initially diagnosed predominantly on the basis of one fungsy nail. I was sent for a biopsy which merely confirmed it was not fungus & that swung it.
Hey, Koala welcome to our world!
One fungus-y toe could nail it! Ask your GP to do a biopsy of the nail and the “stuff”. (Easiest biopsy ever: they clip your toenail and send the bits away.)
The thing that worries me about your situation is this. (Can you hear the collective groan of members around the globe? They know EXACTLY what I’m going to say.)
FEET. Get me going.
The epicentre of my disease was my feet. In the diagnosis and the initial treatment they were kind of ignored and considered a side-issue. I was treated accordingly, that is to say, as if I had mild disease. By the time I got to a super-specialist in PsA (who decided that my disease was severe, not mild) my feet had already sustained catastrophic damage. If your feet are painful, complain, complain and complain some more. Demand MRIs (they will show inflammation, which x-rays don’t). Hound them to treat you aggressively until your feet are comfortable. Trust me, you do not want foot damage: it is extremely hard to repair feet, and you know how important they are.
Best of luck with this, and I hope we’ll be getting to know you much better.
PS: Australia’s a big place. Can you be more specific so that our Aussie friends might be able to share “local knowledge” with you?
That terrifies me, the epicenter of my worst pain and flares has been my feet (and hips). It doesn’t help that they’re the thing one walks on, walking without healthy feet is just not possible, which makes so much exercise out of the picture, which just… Sigh.
Hey Seenie, thanks for that info. I am scared of permanent damage too. My rheumy hasnt really speculated about the severity (to me anyway) and I certainly haven’t had any imaging done.
I’ll ask him next time. I do feel like a nuisance though, as I am pretty sure he has far worse patients - I know it shouldnt matter but you know, I’m a woman, middle aged, invisible etc!
Koala and SF, it takes a middle aged woman to know one. Right? And I know the psychology: “why am I worried if the rheum isn’t worried?” “of course I hurt, I’m getting older” “stop being a whuss and get on with it” “maybe if I lost weight and exercised more I’d feel better” “the doc is qualified in rheumatology, I’m not” “let’s just see what happens with this drug first” "everyone has sore feet"
Yes, yes, been there. When I started getting panicky about my feet not improving after a year of drug trials (my rheum seemed very laid back and unconcerned) my GP got very angry with me and barked "You’ve got to stop worrying so much."
Famous last words. Within a year, exactly what I was fearing happened: my feet sustained heavy damage to the mid-foot, ten joint surfaces destroyed in each foot. I fired the rheumatologist (quite out of character for me). I bolted to a professor doing PsA research. In a teaching moment with a resident he said to her "Don’t EVER let this happen to one of your patients." I sat there slack-jawed. And a quote from my new rheumatologist, “I’ve seen the x-rays. Your feet are a mess.”
I sorely regret not being more demanding in the early days of my treatment. It’s hard, I know, to stand up to professionals who you are supposed to trust. But they won’t be paying for your orthopedic shoes and your mobility scooter. And yes, I have been to one of the top foot surgeons in the country. He really doesn’t want to touch what’s there for fear of making them much worse.
If you have foot pain, ladies, do whatever you need to do to get it addressed. My knees and my hips (3 replaced, one on the list) are non-issues compared to my feet.
Love the middle-aged woman mantra Seenie…know it way way too well. In fact it has been playing in constant reprise this last week
I worry about my feet too and have wondered about mri.
Koala I have seen the guidelines thanks. I am just stuck inbetween…I do have polyarticular arthritis but the blood markers are heavily relied on in the absence of a diagnosis of psoriasis and I am largely seronegative so blood doesn’t have the markers required. Dr has investigated other possibilities but keeps coming back to PsA. Hey Seenie maybe when my feet show damage I might get a biologic… low day today
I am in Canberra …a long way from Perth Koala
We’ve had a few Aussies who’ve got hung up on the fact that they don’t have inflammatory markers out of the ordinary. The sad thing is, 51% of PsA patients have inflammation markers in the normal range. I’m one. I lost my hips and my feet while my CRP and ESR were in the normal range.
The middle aged woman thing is so frustrating. It also plays with your head. Psoriatic Arthritis: wrecks your body and messes with your mind.
Yeah I understand. Mine has said with the dactilytis I have (5 toes currently, with 2 or 3 more that have come and gone) he cant go past this diagnosis of PsA, even with no psoriasis. I guess all rheumys (and people!) are different.
Also, I’ve heard of people going onto steroids for 3 months before blood tests, to get around the blood work being normal.
Did you know 15% of people have the PsA before any skin disease appears? That’s quite significant.
I hope you are feeling a bit brighter soon MacMac.
I haven’t done a proper introduction yet, because I have a burning question - is anyone NOT on biologics for PsA and being treated successfully?
Good question that you have asked. I honestly can’t be that helpful but thought I would share in the hope that it has some benefit to you. I am currently back in ‘the gap’ which I am sure you will read about on this site. I am in the gap because I have had side effects to DMARDS such as LEF and sulasalazine and MTX. Honestly MTX worked the best but side effects too significant. Without the side effects i think I would have stayed on it. It didnt ‘fix’ everything but it certainly helped a huge amount. In Aust it is unusual to take MTX via subcutaneous injection but after my reactions to the oral meds I requested this and honestly it was so much better with less side effects than anything else. So maybe keep that in mind if mtx is working but causing gastro esophageal problems. I never thought I could inject myself but honestly it gets easy. Good luck
. )
