Toe nails

[moomie]

Has anyone had toe nails like this.?

Had lots of new things happen this past 18 months. Rheumy Nurse thinks PSA Reg just says inflammatory arthritis or Rheumatoid.

Had a rash on my legs too.

Think I am going for a second opinion now.

[mirren]

It does look like oncholysis moomie - strongly associated with PsA. Has your rheum reg seen your toes?

Other ways to differentiate PsA from RhA - neg rhF (though in v small percentage it can be pos just like general population) involvement of the end joints of fingers (DIP joints - finger tip pain,painful to type, do buttons) possible involvement of sacroiliac joints and spine, uveitis (eye problem) and history of or family history of psoriasis. Its important to know as though many of same drugs the parhways are diferent. PsA is less likely to respond to DMARDs so only have to fail two to get put forward for biologics. You need to have annual eye tests and optometrist needs to know about your PsA.

I have PsA since last may - diagnosis based on family hx neg rheum factor and DIP involvement. I am on methotrexate 20 inj, leflunomide and hydroxychloroquine. I have no skin or nail involvement. When are you next back at rheum? X

[moomie in reply to mirren]

Thanks Mirren thats very interesting. I see the Nurse tomorrow actually. The reg will not listen. I am on 3 dmards 25 mtx 3g sulpha and 200 hydrox.

Neg rh factor , my Sister has psoriasis on her scalp, top thumb joint very painful during a flare last year top finger joints joined in , optician diagnosed bleaphritis and my back oh dear. Many years been told sacro iliac inflammation. Early this year I was in a state could hardly get out of bed. Had MRI which to everyone's amazement didn't show inflammation only osteo and multi level ddd. Rheumy Nurse wonders if they scanned right area. Anyway G.p gave me steroids after reg refused. Within about 3 days I could move again. Like being released from a strait jacket. Plus I was feeling ill started to get better.

Last visit to see reg (Cons on sick leave) he just said if I cannot manage without steroids will need to up mtx or add another dmard ?? Proves how much noticed he took or that he had not read my notes.

Just passes rashes I have had on my legs as rheumatoid. Even the fact my Dentist was concerned aboutmy dry mouth and ulcers. She ref me to dental hospital he just said goes with RA.

Been to dental hospital had a few years. Mouth dry neck ultra sound shows thyroid nodules and ulcers are related to Steven Johnston syndrome. She thinks this was caused by recent colds and cold sores.

Thank you for your reply it was really helpful. I will show my toes to the Nurse tomorrow.

I hope you are finding the combination of drugs are working for you. Sounds like you have a good understanding team. In the end all you want is help to manage things and get on with life.

Thanks again Mirren

[mirren in reply to moomie]

Moomie i would say you definitely have PsA... and you should be considered for biologics if not controlled on 3 dmards, you shouldnt be left to be depending on steroids for relief.

I have had 7 lots of steroids in a year, by oral, intrajoint, and intra muscular, but i am a recent diagnosis abd accept i have to give dmards time and wait to see if increases and additions help.

Unfortunately my bp is climbing and my lfts too. Im probably going to have my lef stopped and then wait to deteriorate enough to need biologics!

I still work fulltime so worried about that period. I have thoracic spine and shoulder pain, elbow, left wrist and right ankle involvement at moment, but all 'bearable' scared to see how i am when lef leaves ny system! Good luck moomie, go in with your facts, and tell her you know by NICE guidelines you are now eligible for assessment for biologics. Even if it was RhA you are not controlled on 3 dmards.

[moomie in reply to mirren]

Thanks Mirren. I am paying for private physio. He is brilliant used to work in rheum. He has said similar things about biologics and is encouraging me to get a second opinion by a rheum he knows.

I really admire you for working full time. I know how hard it is. I am struggling with 22 hours and reducing to 18 next month.

It doesn't seem right that you should be made to wait and get worse before you can get onto biologics.

Do keep on at them. I know only too well how steroids help but like you say not really good long term.

Thanks again I will go tomorrow more informed.

[Sanbanan]

Hi Moomie

I was diagnosed with PsA 2 years ago. My toenails were the same and fingernails not much better.

I didn't realise I has psoriasis as I only had a patch on hands and soles of feet which I put down to dermatitis. I mainly have pain in feet, hands, back and left knee.

I have had Methotrexate and Leflunomide which I had to come off due to bad reactions. I am now on Sulfasalazine and have also tried cimzia and Etanercept biologics which have responded poorly to the joint pain but have cleared nails and psoriasis on hands. I am due to start Stelara next week.

MRI scans of my feet and hands showed bone erosion and inflammation.

I hope you get sorted soon with a diagnosis.

Best wishes x

[moomie]

Thank you sanbannan. That is helpful.

My joint pains are fingers wrists shoulders elbow knees ankles feet and back. Had a red like rash and module on left elbow which cleared after increase of mtx.

I do hope the stelara works for you.

[Seenie]

Yes, almost exactly like mine. I have PsA.

[moomie in reply to Seenie]

Maybe I have a break through at last. Fingers crossed.

Thanks everyone.

[moomie in reply to Seenie]

I am so frustrated. Once again been brushed under the carpet by the reg. It seems like I go round in circles.

The Nurse immediately started asking about psoriasis, showed the reg and he was not interested.

Thank you for your reply it has set me on the right tracks, speaking to myG.p tomorrow.

[Hidden]

You have what looks like Psoriasis on your toe nails, if not already ask your GP for bloodworks to check If you are seeing a Rhumi show her/him your nails.

Part of what you see will show as ridges on your hand and toenails

BOB

[moomie in reply to Hidden]

Thank you Bob. I had my appointment with Rheumy Nurse yesterday. She said my nails showed pitting, went to show a photo of them to the Region I see. She came back and said he wasn't interested and to show my G. P .I am not impressed the other Nurse thinks I have Psoriatic arthritis. It was such a shame she was not there.

I have to see my G. P tomorrow and going to discuss a second opinion.

[Hidden]

Do not let them palm you of with this, I understand you have the rash as well.

You could try Epaderm or E45 on your Rash. Aquatious cream can be applied before washing and after a time wash it of.

With soaps, try honey base liquid soap and Coconut base soaps, they are generally liquid soaps. Try not to use Biological soaps, they can further dry the skin

Keep a hold

BOB

[moomie in reply to Hidden]

Thanks Bob. Very informative. No I think a definite change is in order. On last Dr visit he said if I have problems coming of steroids they will increase mtx or add another dmard. I am on Max dose and take 3 dmards.

[Hidden in reply to moomie]

That is one big push of medications, you watch your white blood cells they bottom out if the are not careful.

Try BioOil on your nails and part of face, it can be expensive although it goes a long way a small bottle about £9.00 a go. It sinks into skin well and is used after surgery and Plastic Surgery. you do not need a script for this

BOB

[moomie in reply to Hidden]

Thanks Bob I will get some of that oil to try. I am hoping though they are like this for when I get an appointment with the new rheum. The hospital never inform me of blood results. Do occasionally white them in my mtx book. Got another cold starting. This will be the 3rd since July.

Thanks again.

[Hidden]

I will be around if needed

BOB

[Seenie]

Moomie, you really do need a second opinion. With nail pitting, negative RA factor, a family history of psoriasis, a history of unexplained rashes and toenails that look like that, my money is on Psoriatic Arthritis. I think the nurse knows that too. There's no question that you have had considerable pain and inflammation (the steroids worked for you). Obviously they believe that if you are on a couple of DMARDs now. But you need as precise a diagnosis as possible, because that's what informs a good treatment plan.

How are your inflammation markers (blood work)? I'm guessing they were normal or only slightly elevated. You need to know that more than half of all PsA patients have bloods that look perfectly normal on paper, even when they have a great deal of inflammation. (I myself was a very extreme example of this.) You might want to mention that to your GP, as it's a an obscure bit of PsA knowledge.

There's another way of going about the second opinion that you might want to explore. A referral to a dermatologist could be very helpful to you as well. If you get a derm that says "Yes, you have psoriatic nail changes" when they know your arthritis history, they will most likely be able to point you in the direction of a specialist in PsA. I don't know where in the UK you live, but there are world class PsA specialists in Leeds and in Bath.

You may need to arm yourself with some information when you go to your GP looking for a second opinion. This may help:

papaa.org/resources/about-p...

I'm so sorry you are going through this, but pushing for a more accurate diagnosis is very much worth the effort, even though effort is not something that is easy for you right now, feeling as you do.

Good luck with this. Let us know how it goes.

[moomie]

Thanks Seenie that is brilliant had a good read. So much fits while swollen fingers and spit on with inflammatory markers . They are rarely raised. I had a toe nails just lift and drop off last year too.

I have beenpaying for private physio. He is excellent and lectures at the university. He also worked in rheumatology. For a while now he has been pushing me to go to a consultant he knows. He feels I am not getting right treatment. I am young (like him for that. 53) and want to get on with life but restricted. Definitely inflammatory arthritis going on in my joints.

I also had a call from my favourite Rheumy Nurse last night. Again messed up with blood forms I should have had. She was not there Monday. Anyway had a good chat and told her my thoughts. She totally agreed said something needs sorting and it has gone on too long. She is also leaving soon. That made my mind up to for a second opinion.

I have to seeG.p anyway this am. He sorts my steroids out. Plus been sent to dental hospital by my dentist? Secondary sjogrens. They have found nodules on my thyroid. Plus the mouth erosion been told Steven Johnston syndrome. Poor bloke will be sick of me.

Feeling more positive thanks to you and everyone ones help here.

I live in South Yorkshire btw.

Thank you : )

[Hidden in reply to moomie]

Yes I have PsA

It does effect the nails although having Psoriasis of the skin can show the same problem. What we have to watch is the nail bed can become infected with Psoriasis, the nail becomes lifted and we can suffer ingrown toenails sometimes infection can effect the nail bed as well, I have lost a nail because of this and have a nail bed exposed with the Psoriasis still there

I am quite lucky I get my nails cut by the clinic and they keep an eye on infected nail beds and associated ingrown toenails

[moomie in reply to Hidden]

That's interesting I have had toe nails removed several times due to in growing and infected..

Sounds like you have lots of problems. Hope you can get some treatment in the future.

[moomie]

Spot on with everything Seenie. I have been to the G.p today. He has taken toe nail clippings to eliminate a fungal infection. Referral has been done for a second opinion.

Thanks again.

[Hidden in reply to moomie]

Hi moomie.

I had exactly the same thing done, nail clippings sent off to confirm or eliminate fungal infection. I have also gone down the second opinion route, it worked out so well. I've recently moved house / area so now have yet another rheumy (you can imagine my dread) but she seems to be very clued-up and proactive too. There definitely are rheumatologists who have a PsA blind spot but there would seem to be an increasing number who are alert to the signs & symptoms and prepared to treat it aggressively.

While you may have a bit of a wait for your appointment with the new rheumy I think the odds of getting a good one are stacked in your favour. Did your GP positively recommend the rheumy you're being referred to and have you subjected him or her to Google? Their profiles often provide clues about their approach at least.

As Seenie points out, there are 2 centres of excellence for the treatment of PsA in the UK. Before the first appointment with my new rheumy I was ready to hot-foot it to the Bath hospital if needs be, either under the NHS via a GP referral or privately if I had to. I don't personally know anyone who has been to the Leeds hospital but I get the impression that the Royal National Hospital for Rheumatic Diseases in Bath know all too well that PsA is often missed or misdiagnosed & therefore positively welcome desperate patients with dodgy toenails.

It is great to hear that things are moving forward for you, can't wait to hear what I hope will be good news in terms of diagnosis & treatment & a rheumy you can have real confidence in.

[moomie in reply to Hidden]

Hi Postie, was at Gp yesterday again. 3rd cold and chest infection since July . Anyway he has got the nail clippings back, not conclusive fungal infection , traces of candida so to repeat the clippings. Hope this is a positive step forward. Had a letter regarding Rheumy appointment. The recommended one is not taking any new Patients other than Lupus ones. Got to see physio later who recommended him and see if he can do anything.

Thanks for advice.

[Hidden in reply to moomie]

I hope it's a positive step too, at least they're really trying to extract some hard evidence from your nails. But what a performance!

My geography's rubbish, I can basically divide England into north, middle and south. But going by that the centre of excellence you're closest to is the Chapel Allerton Hospital in Leeds. I think it's Chapel Allerton, will check. Could you handle the travelling and if so ask for a referral there? Being an interfering busy-body I might give Chapel Allerton a ring today to find out what's what.

[Hidden in reply to Hidden]

Haven't got on the blower yet, but googled Chapel Allerton. Their reputation for getting to grips with PsA seems to be based at least in part on the research they've been involved in:

leeds.ac.uk/news/article/34...

'Aggressive' - that's the word we want! Before I had PsA I associated it with playground bullies but now I like it a lot.

[moomie in reply to Hidden]

Thanks Postie your brill. It would be about 30 miles I think. In a quandary now as to what to do. The physio is doing some delving too to see the best route.

I will do a bit of googling too if time before work.

So hate having to see new people. I worry that they are going to say fibro and take me off treatment. My G . p has said that won't happen and physio today said too much happening and inflammation.

It's just my big worry I suppose.

What was the results of your toenails nail clippings BTW?

[Hidden in reply to moomie]

Did you see my message re. Chapel Allerton? An exploratory phone call about referral wouldn't commit you to anything. Being about 30 miles away from a centre of excellence puts a different complexion on things .... I know what I'd do!

Toenail clippings result took an age to come back as I recall, but result was 'no fungal infection' which left psoriasis as pretty much the only other conclusion, I suppose.

[moomie in reply to Hidden]

Thanks read your reply regarding Chapel Allerton yes. I will ring and ask advice. It is the not knowing if it is PsA that makes me undecided. But you are right if it is a centre of excellence.

Thanks again.

[Hidden in reply to moomie]

My impression is that it's a centre of excellence for rheumatology generally, which might be all to the good in the circumstances. Though from their research into PsA I get the distinct feeling they know PsA when they see it, which for some mind-bogglingly bizarre reason doesn't seem to be the case with some rheumys. I share your frustration .... and trepidation. Getting my PsA diagnosed was difficult enough, what you've been through takes the biscuit.

[moomie in reply to Hidden]

Hi Postie,

A long time replying. I went to see the Cons that was recommeneded privately last night. He was as expected excellent. Unfortunately he cannot take me on his NHS books red tape. I am going to see though someone he recommends next month. This Cons has been on the Leeds rotation so is clued up about Psa.

He gave me a good examination and said I really need sorting. A lot of auto immune things going on. He is recommending I see a dermatologist. As it happened I have an open sore on my head that just appeared in a few hours. It started like scabby dry skin then it opened up.

Also need scans and x rays he says I have a lot of osteo going on that needs sorting. Also when he moved my shoulder it wouldnt and hurt. He says I have an impringement there. A few joints have restricted movement. Just shows how things just become normal or accepted.

He said from an inflammatory view at the moment no activity but I am on a lot of immune supressents plus steroidsso it is keeping things at bay.

Think I feel a lot more confident in the change of team now. Although as you can imagine I will be apprehensive about my first visit.

Another point for changing too was I have been vomiting. Rang the rheum helpline to see if it could be mtx. That was Nov still no call back. My G.p has reduced the dose to 20mg and ordered a C.t scan in case it is my gall bladder. Plus I have anti emetics. So lucky to have such a good G.p.

Well thank you for all your advice, I will keep you posted . Hopefully with positive news.

Moomie

[moomie]

Thanks Postie. I am really pleased you have found a good Rheumy. I have been thinking of you with the move etc and your biologic.

It was the private Physio that strongly recommended the new Rheumy. He is going to speak to him too on my behalf. The Rheumy Nurse thinks he is a good Dr, his interest is connective tissue but obviously does all round rheumatology. The physio says he listens to Patients and treats them as a person. Sounds good to me. When I spoke to the Gp, he asked where I wanted to go and if out of town. I told him what the physio had said. He agreed and said he was a good Rheumatologist. I am as you can imagine really apprehensive, but know I cannot carry on where I am. It is getting a farce.

Today I had a follow up physio appointment after having hydro. Initial appointment I was seen by a student that was June. Sent me to hydro at a local pool. Anyway today saw a physio, he was going to put me into a class in the gym but then said actually there is a lot of work on floor mats and you wont manage. Got an exercise sheet and he said nothing more I can do for you really, cannot cure you. With arthritis and rheumatoid you need to do what you can when you can. I have a swollen knee that is causing bother, he didn't look at it. Never examined my joints at all. Nurse appointment on Monday I mentioned it. She said well we can x ray it again, you have narrowing joint space in that knee, we can see if it has got worse. I was just flabbergasted nothing is being done.

Did your toenails continue with the pitting/ discolour or did it grow out .?

Mine is only about half way on the big toes and tips of the toe next to it.

I just hope the new team will be as helpful as you and the people on here.

Not sure of the waiting timG.p wants me to continue with the current hospital until I do move.The really good Nurse is ringing me with blood results I had to have today for the Sjogrens. She thinks it is that as a secondary anyway. Also said to keep her informed and she will make sure I have enough mtx injections. Oh how I wish she was a Rheumatologist.

Anyway thanks very much again.

Moomie

[Hidden in reply to moomie]

Thanks for thinking of me Moomie. We were travelling around in the heatwave before moving into our new home, so as well as uncertainty about getting the humira prescription re-issued in this CCG I was a bit concerned that my remaining injections might have overheated . But my new rheumy fitted me in pretty quickly & got the humira sorted and I've survived more or less intact!

Wow, it sounds as if you have some really strong recommendations for this new rheumy. Just a shame your physio was so dismissive. The hydro sounds positive though. When my knees were flaring badly to the extent that walking was difficult & even getting around at home was only just possible I was given some very uninspiring exercises to do by my then very uninspiring rheumy. Basically just lift / lower / lift / lower. That was painful and seemed futile but in retrospect I think I should have persevered a bit more, if only to keep the muscles strong as muscle-wasting contributes to secondary OA. And In fact my joint spaces decreased rapidly within a couple of months. Once pain improved a bit I got a second-hand exercise bike & pedalled while watching telly, boring but probably worth it.

My toenails were just grey and rough really. I think they improved somewhat once I started Mtx, they haven't got any worse anyway. But I realise you're on Mtx already. I wouldn't mind betting that your new rheumy will be thinking in terms of biologics, I really hope so.

I think that when we feel stuck, when indeed we are stuck, it's hard to imagine things going much more smoothly. Even though I've had a fair bit of luck so far I half expected my new rheumy to tell me to get the hell out of her office and get a life. I was braced for it! But no, she took my PsA appropriately seriously. People, I mean family & friends etc., tend to look on the bright side on my behalf, as perhaps they should, but she was just looking for what was wrong with me, thank goodness, 'cos that's her job! Still comes as a shock and I hope you get a shock like that too, and soon!

[moomie]

Really pleased you have a good outcome. And you are happy in your new house and location.

I have an old exercise bike too. My problem is my youngest dog doesn't like it. He barks at my feet and cannot work it out. Also been to aqua aerobics, I went yesterday do enjoy it and it doesn't matter if I cannot manage all the things or keep up. I was shattered last night and was in bed at 9.

My toe nails are also rough. Last year I had a lump / module on my elbow with a rash round. Current SPR said rheumatoid nodule .When mtx was increased and switched to injections it has almost gone.

I will let you know when I get an appointment. Looking at the hospital waiting times I think it should be 14 weeks.

Thanks again for help and support.

[MeLliedePena]

Moomie, this picture made me join up for this site because my toenails look exactly like this. My fingernails are weak, but toe nails look like yours and I also have psoriatic arthritis and SA. I have weird symptoms that are not typical. My scalp itches all the time with no rash. I take enbrel and it works for the first 3 days then the itching comes back. I get rashes on my hands but they are red not white plaques. This is all pretty new to me and I’m still trying to navigate. Thank you for posting this. You helped me feel like I’m not the only one, and confirmed that it’s not toenail fungus.