Saw the Rheumy today. Confirmed that I now also have arthritis in my feet as well as neuromas. He says it is just bad luck that it has now affected both knees and both feet. I’m 41. I said I was worried about other joints and he said the good thing about OA (he is still convinced that is ‘all’ it is) is that it comes on very slowly. Well NOT IN MY EXPERIENCE. My feet were fine and then within a matter of months I can barely walk on them. He isn’t even considering PsA because my psoriasis isn’t very bad (and he’s right) and my bloods are all fine. I’m so frustrated because I am SO sure there is something else causing this and I need it to be slowed down before every other part of me starts crumbling. And I’m so tired of being in pain and living on cocodamol. I’ve looked up the best rheumy in the UK and will try to go there for a second opinion but really needed to rant here because at least you guys will understand what it’s like. I wish I could find a rheumy that actually has arthritis so they have some clue what is going on. Grrrrrrr.
I don’t blame you for the rant! Anyone would be upset! Wow, so you don’t have PsA because your psoriasis is mild and you don’t have the positive blood markers? Really? When/where did this guy get his medical degree?
You’re doing the right thing getting that second opinion! In my opinion —at least from my own personal experience because I have OA and PsA—PsA symptoms are way different than OA. I think you know it when PsA takes over. It’s really difficult to describe exactly how it feels—symptoms can come and go, especially in the beginning. They can be vague and a general feeling of being unwell or acute and severe and a feeling of hopelessness for ever feeling better! I think most of us have experienced all of the above.
I have OA secondary to PsA in my feet. They feel terrible and walking can be very difficult. My PsA is controlled with Enbrel. I can’t imagine how awful I’d feel if I had the PsA along with the OA right now!!!
I hope your second rheumy is more knowledgeable about PsA. Good luck!
Hmm. So how does he explain how you have so much joint involvement if it’s not systemic? Bad luck? At that age? Not only that, but the amount of psoriasis doesn’t matter one little bit! There are people that don’t have any psoriasis at all at the time of diagnosis. Second opinion is definitely called for.
Any individual with many joints showing inflammation, degeneration, etc should be considered for the possibility of systemic disease.
Find a new doc! I have VERY LITTLE psoriasis. Just a little in my hair I thought was dandruff. Once the PSA started three years ago it has progressed rapidly. Now on Cosentyx and had to take a three week break due to flu. Both feet hurt, both knees are in bad shape. Have all over pain and it is in my low back. I have a good Rhuemy. He quickly moved from Otezal, to Enbrel, to Cosentyx,
My question t you is have you been through some body or localized traumas or surgeries over the last few years. My doc feels like ten year sof neck surgeries from car wrecks and a recent major surgery for prostate cancer turned mine on.
Go Rhueumies are hard to find, keep looking. My blood test show nothing, doc said they didn’t mean much unless I was in REALLY bad shape. I am even ILA-27 negative.
My give away symptoms were the rigid fingernails and rotted toenails. Now that the PSA is getting bad I am starting to get a little P on random places on my body. I never had this before.
I can’t tell you how good it is (in a slightly dark way) to read your message. You sound almost exactly like me. Ps is also mostly in my hair. And I have those toenails and shredded skin on top of my toes.
I’m trying to get an appointment at the research centre in the UK. Are you UK based?
I’m in the UK. Where are you trying to get to? Let me know and I could possibly help. x
I hope it turns out that you do indeed have OA and the progression slows considerably from here on. However I can absolutely see why you have difficulty accepting that diagnosis. I wasn’t happy with my OA diagnosis either, nor were hundreds of other PsA patients who have reported similar experiences initially.
Did your rheumy really say that your psoriasis isn’t bad enough to indicate PsA? That’s just nuts! Sigh … I thought that old chestnut had been well and truly abandoned. Any psoriasis past or present suggests the possibility of PsA, if your grandma had psoriasis then that does too.
Well, this stuff does happen. If you’ve got PsA you’ll get a diagnosis soon. You’re doing the right thing seeking a referral to the best PsA-aware rheumy you can find. If you can afford it, pay for a private appointment ASAP, I’ve done that twice and both appointments eased my path considerably. Is it the RNHRD in Bath you’re considering?
Do you feel generally unwell? Flag that up if so. Emphasise the nail changes. Take photos if your psoriasis worsens between now and the appointment in case it calms down beforehand. Is your GP onside? You could ask them for regular blood tests to catch any spike in ESR / CRP.
I’d bet good money (if I had any) that you’ll get a PsA diagnosis within the next 3 months because you’re clued up. Plus we’re behind you now
Trying to get a referral to someone who knows what they are talking about and who isn’t going to keep robbing me off with OA diagnoses. I’ve contact Dr Ellie in Bath but any more suggestions would be very welcome. I’m in Surrey but happy to travel for the right person.
Well Bath is busy, that’s the downside. But then so is every other rheumy department in this country. I’m saying this because of our friend @Poo_therapy’s recent experience. But while follow-ups may sometimes be a little … um … peremptory, I reckon Dr Ellie is the best in many ways, she’s my consultant too.
There are also logistical advantages of going to a centre of excellence if you’re seeking a referral outside of your CCG, to do with prescribing biologics. So that might be an extra reason for choosing the Bath clinic.
Can you get a private appointment? You’ll get much more time allotted to you and there’d be a much shorter wait.
Yes @JJE239 Dr Ellie is also my consultant whereas the one and the nurse I saw there on Monday in the biologic clinic follow up, I’ve never seen before and hopefully won’t again. But Dr Ellie is in my view just marvellous both for her expertise and just humaneness. She does private appointments too, so if the wait is too long - go that route. As least then you’ll be seen by someone of just considerable competence which can make all the difference.
US. It took me two tries to get a good doc. I finally called my personal doc I have had for over 35 years and he pulled some strings and got me in to see my current Rhuemy that wasn’t taking any new patients. Hang in there and keep searching.
And Dr Ellie is my consultant too … are you picking up on the theme here @JJE239 ?
I’d already been diagnosed but needed a second opinion when I first saw her privately and then had all my rheumy care transferred to her specialist NHS clinic in Bath. I can walk again thanks to her expertise and insight. As Poo and Sybil have mentioned there can be the odd hiccup in the ongoing clinic appointments but by and large I feel MUCH happier having my care overseen by a team of specialist clinicians.
Thanks everyone. I have a private appointment booked with her in December and feel much happier now.
This forum is amazing. Thanks for all your support.
Well done you!
That’s great! I hope the appointment makes things much clearer and gives you a way forward.
Need a new rheumatologist! You can have PSA even before any signs of Psoriasis! The sooner treatment begins the better the outcome!
@jje239 I’m glad to hear you’re getting a second opinion. I’m 44, so just a couple of years older than you and I was diagnosed with PsA just last year - even though I’ve yet to show any blatant signs of psoriasis (it is in the family, though). My diagnosis came via a second opinion after my original GP told me there was nothing wrong with my body, even though I’d had chronic pain and inflammation in my hands and feet for months. But knowing my body, I went to a different GP who immediately recognised the symptoms and referred me to my current rheumatologist.
It’s disheartening to hear that it’s a rheumatologist who doesn’t know their stuff in your case, but I’m glad to hear you’ve taken the matter in your own hands - after all, it’s your body and your health, and you know your body and the pain better than anyone else.
I hope Dr Ellie works wonders for you. I’m moving to Somerset in the new year, so maybe I’ll look her up too. Good luck!
I don’t think I would be happy either, very disappointing when we are relying on the expertise of others! I also have mild psoriasis, and my bloods are fine. Like you, deterioration with my feet happened quickly. My rheumatologist said I “clearly had psoriatic arthritis” - meds are working nicely for me.
Very sensible to get another opinion, and hope that goes well.
When your in the UK & you are referred to Rheumatology via the NHS then your basically getting slotted in with the Dr who has a space. It’s pot luck as to whether you end up with a really good one or not. I know from my own career (as we all do) that some of our colleagues are better than others (shall we say). It’s so nerve wracking before you meet them. Will they be approachable easy to talk too & more importantly sympathetic to how I feel both physically & mentally. This thing is challenging on both counts so even following diagnosis you need to be able to offload to them. Thus Poo saying that this lady (apart from being excellent & we all want that) is very human. That’s so important I think
Feet are a bugger & I have had OA in mine. I had to undergo toe fusion for it this summer. That was just a challenge to get over but agony before the op. I have PsA in my feet as well. They swell on the underside (not toes) & that feels completely different from the OA. That felt like toothache in the bone. The PsA is burning nerve pain OA & PsA are in fact two completely different types of pain.
I have lucked out with my Rheumatologist because he’s really good and very kind. That was really just luck & the clinic I was placed in but my diagnosis appointment was totally horrible, I wasn’t sure I was ever going back to see him because he wasn’t that nice to me that day TBH. We have developed a much better therapeutic relationship since then & with this type of chronic decease (they treat the whole person not just the condition) that is so important. Hopefully you have found that now. I don’t present wiith the skin Psoriasis and never ever have. Some of my family do.
So as you know I have an appointment with Dr Ellie which I’ve left until January because of work commitments, but her office asked for a GP referral which I suppose is quite normal. So I went to see my GP to ask for the letter- new GP as my own has left the practice. He asked me why I thought my symptoms were indicative of PsA. I said, errr… arthritis + psoriasis… He said there was nothing in what had been seen in my joints so far that suggested anything other than OA. Is he right? If nothing shows up on blood tests, how do I know whether I have PsA or am just super unlucky with OA developing in multiple joints? Or is there some reason why GPs in the UK do not want to talk about PsA with patients? He, just like the rheumatologist, was not the least bit interested in the psoriasis part and didn’t even ask to look at it.