What is his right to a rheumatology referral - Psoriatic Arthritis?

[CarGirl]

Please help, are we being unreasonable with this request?

Dh is fairly certain that he has psoriatic psorasis. He had sudden onset of extreme stiffness and then pain in his fingers, toes, balls of feet, ankles. 2 toes became very swollen and now one of his fingers has started doing the same thing. He has been in so much pain some mornings he has struggled to walk at all, during the day the stiffness and then pain levels improve. The strong anti inflammatory drugs seem to helped as well although not completely.

After 4 GP visits and his blood test results showing slightly lowered Vit D results the GP now says it is Vit D deficiency and refused to refer. His Vit D levels are 27 and the normal range is 30-74.

On the CASPAR score for diagnosis psoriatic arthritis he scores 4

CASPAR Criteria

More recently, the ClASsification of Psoriatic ARthritis (CASPAR) study group has compiled a more sensitive and specific criteria set. This consists of the presence of an inflammatory condition in a joint, the spine, or entheses (the point where tendons or ligaments join to bone), plus at least three points from the following:

Current psoriasis (2 points)  - this 

Dactylitis(swelling of digits) (1 point) - this
Nail dystrophy (pitting or ridging of nails) (1 point) - not this

Negative rheumatoid factor (1 point) - this

Radiographic evidence of new bone formation (1 point) - not yet tested.

He fits all the classic symptoms of PA and NOT those of Vit D deficiency. His toes and fingers are being damaged and the only treatment in addition to anti-inflam drugs are steroids which ccan only be pescribed after seeing a consultant.

What are his rights to insist on referral and stop being fobbed off by GP???

A private appointment is £260 excluding xrays, not money we can really afford

Either way he needs to get his vitamin D up - has the doc offered treatment for this?

I have looked at those criteria and I also score 4, but I definitely don't have PA. Can you be certain you are not making 2 and 2 make 5 here?

Does he already see a consultant for his psoriasis? If not, can he do so and get this looked at that way?

Otherwise, I don't think you can insist on a referral if the GP's judgement is that it is not necessary.

If all else fails, could you change your doctor?

D

Yes he started his Vit D.

So what does cause your agony, that means you can't walk (you hobble around instead), can no longer exercise when 6 weeks ago you were playing football and tennis and your toes are become mis shapen before your eyes?

Vit D pain is described as being generalised pain to the bone or muscles, this is very specific to his toes, fingers, ankles and knees, his 2 worst toes became like big fat sausages - the specific thing that happens to PA sufferers plus he has just been through a hugely stressful time - very very likely the thing to kick of psorasis episode or a PA episode.

My dh is not a wimp he really is in agony with burning pain, unable to use the mouse on his PC because his fingers are so stiff in the mornings he can't bend them for the first few hours.

Also if you have psoriasis you are very likely to have lowish Vit D levels as they are linked yet Vit D is not a cure for P or PA at all.

The damage to his digits is irreversible

He's never seen a consultant for his psorasis, he definately has it though as does one of my daughters

Anymore advice from anyone...

Sorry I'm really fed up and cross with the run around we've been given. Same sort of issues when he had pneumonia - his chest sounded clear so he was very very ill by the time they bothered to xray!

You need to get bloods done. Specifically ask for the inflammation markers ESR and CRP. Also ALT (liver functions). If arthritis then the first 2 should be elevated. My DS who is 4 is suspected of having juvenile arthritis. It's painful. Hes on steroids now. And was on naproxen for pain relief in the hospital.

I know you're worried but you're making a lot of assumptions. You don't know that he yet has damage, it's not overly likely if it's recent onset. It's worth getting a referral to a dermatologist as well as rheumatologist. It was thought I had psoriatic arthritis so was referred to a derm who said it was a different skin condition. My consultant says her clinicians won't comfirm PA without a dermatology opinion.

Anyway, the bottom line is that with those symptoms, he should be referred. Have a peek at this:
www.arthritisresearchuk.org/arthritis-information/inflammatory-arthritis-pathway.aspx

He has raised ESR - I can't see CRP on the blood test results, but unlike rheumatoid arthtritis PA can't be diagnosed by any test.

You can already see the damage to his worst toe, the swelling has reduced on it over the last 3 weeks but it won't straighten anymore etc.

It is definately psorasis, GP has confirmed, dd sees dermatology and it is identical to hers - 2 different kinds of lesions too.

Juvenile onset arthritis can't be diagnosed by a specific test either. We went through a myriad of blood tests to the v exotic to eliminate any rare infection and cancer. You need to get specific bloods done. ESR CRP ALT, ferritin.

I have PA and during a flare up - well it is agony, I cannot imagine it without propper pain relief. I also have Vit D deficiancy.

Is your GP's a group practice? If so see another GP, otherwise go to the dermatologist and they can refer your DP to Rhumatology - they can also order the blood tests.

I've had steroid injections from my GP, but I know not all do it.

So go back to GP and insist on a referal, say you will go to GMC if not.

On a practical level DP needs painkillers and antiinflamatories, has he got these from the GP?

Other things that can help

Camomile tea - antiinflamatory properties.
Hot bath - just to soak.

If his hands 'claw' over night you can tape a large ball of cotton wool to the palms to stop them clawing in the night.

Well, confirmed psoriasis is a step in the right direction. I still think he should be referred to dermatology, they will be used to seeing psoriasis patients and PsA is fairly common. Well, not common but it won't be alien to a dermatolgist.

Also, to reassure you that swelling will distort joints and it still may not be joint damage, so don't stress on that area. It look a long time for my hands to look less deformed. They are not damaged at all, fortunately, although at my worst, they looked like it.

Can your husband see another GP?

He can see another GP so will go back.

He has Naprosyn anti inflam and has been taking paracetamol.

He truly is in agony and his Vit D levels are only borderline low hence thinking that alone could not be the cause.

He doesn't drink hot drinks at all and we don't have a bath

Is the burning sensation something you suffer from sassh?

The flare up is definately calming down (as is the major stress causing issue at work - conincidence not I think) and where he gets the worst of the pain does move around between toes/fingers/knees/ankles pretty consistant burning sensation and pain in the balls of his feet though.

We would be happy with a referral that even ended up ruling it out tbh.

The bottom line is; a GP must refer him to a rheumatologist, so keep pushing!

Keep pushing. I knew I had PA 2 years before it was diagnosed by my GP. Unfortunately I already had joint damage by the time I saw a consultant (and I was only 26).

I am now 37 and finally have a treatment that works. Keep pushing. Really hard.

All the best to your DH.

Thanks Bombastic, it is so frustrating, the pain at it's worst was excrutiating for him, he just had to hobbling - so different to how Vit D deficiency is described not to mention his 2 sausage toes .

He is going to make an appointment and I guess I'll go along too and state the facts that his symptoms fit PA, not Vit D deficiency although that could be contributing.

Diagnosis will mean us make some life changes now rather than leaving it for another decade or so.

Update:
DH got referred by a different GP sort of by accident, his notes said if the pain didn't improve to refer - didn't mention he was supposed to give the vit D 3 months to work.

Saw consultant this week. Is def PA, his ESR levels in the bloods meant it could never have been Vit D deficiency. He has to take NSAIDs and if he cant tolerate them will probably be for the rest of his life, he is pretty devastated . Side affects of drug combo is pretty scary and he's not allowed to exercise if it increases the pain.