Hi Everyone, I am new here!

Welcome Greetings and Introductions
1

Hello, a very nice lady from NRAS forum introduced this site to me and here I am.

I have psoriasis for years and been struggling with joints pain for nearly three months, also with proper checking up and referral.

All my blood tests are in normal range but my feet (ball) in series pain whilst walking, and my finger joints are painful if I try to do anything with them. one of them looks swollen although my ESR and CRP are normal. and the colour of the joints looks a bit darker than before.

My GP said there is no inflammation in my body so he had referred me to a physiotherapist, he also said he doesn’t have any evidence can be used for a rheumatologist referral? The appointment for physiotheropiest is on this Saturday
The GP also said the physiotherapist will be able to make a referral to rheumatologist if necessary…

I have been reading posts on this site and you guys seem very kind and helpful, very info sharing. Can I get some suggestion what should I do.

I rang the Bath Royal Hospital for Rheumatology today as the nice lady mentioned above has told me they are the best in the field, and I was told I have to get referral letter from my GP and the waiting time is 15 weeks! So I called for a private consultant and been told that the cost for consultation is 220 pounds without any tests or scanning. I can accept this price but not sure how much does cost to get a proper scan?

I had X-ray on both of my feet and knees a month ago, GP said nothing wrong. But after a lot of googling I learnt that X-ray doesn’t tell much. Do I need to get a MRI or ultrasound done before making appointment with private consultant? Or can I ask my GP for this? I guess he is getting bored of me… Ahhh, Bath said I also need referral letter for private consultant.

If unluckily diagnosed with private consultant, I will need to pay for the first medications, what is happening next? GP will prescribe the pills and monitor my blood? what if there is a need to change medicine?

I also noticed there is a clinic called early inflammation arthritis clinic. But didn’t find one for PsA.

Do you have any good recommendations? I live in Bexley, Kent.

This is becoming too complicated now. I believe the earlier get treatment the better in case of PsA, but it seems everything is trying to make this harder…

I also noticed that there is a disease called neuropathy in feet, the symptoms look same as my feet, but will this spread to hands and fingers? I currently don’t have any sausage fingers or toes. But do have 3no funny looking nails.

What would you do if you are in my shoes?

Thanks guys.

2

Hi!

glad you have joined us. Many people with PsA have no inflammatory markers in their blood (I’m one of these) so my blood work always looks perfectly normal. And often people with PsA don’t (yet) have any deformities or marked erosion of their joints (I’m one of these too) so my Xrays and scans look pretty normal. But that doesn’t mean you’re nuts or that you don’t have a serious inflammatory disease. PsA can be determined by a variety of factors, including history of P, joint swelling, nail funkiness, etc.

While, yes, we believe that early intervention is the best, this means treating the disease once diagnosed and treating it aggressively. Of course waiting for appointments is NEVER fun, don’t despair. We’ve all had to hang around for our consults and initial diagnoses can take a while.

It seems to me you’re doing the right thing trying to chivvy along the doctors. Others based in the UK (i’m in the US) can chime in about the specific clinics and protocols they use–we have some great local help for you here. Hang in there and don’t despair!

3

Hi there dahongbudong, welcome to LWPsA.

I travelled the private then NHS route myself locally and then did the same to have my care managed out of Bath even though this is a 2 day round trip for me.

The Bath clinic is fantastic (private and NHS) and are, as you’ve been told, the experts in the PsA field. It is well worth you paying for a private appointment (just “tell” your GP who/where you want the referral) … they will get to the bottom of what’s wrong and if you tell them, when you make the appointment, where you had the x-rays done they will get copies for the consultant ahead of your visit … and take copies of your blood tests too.

If you’re dx’d with PsA (or anything else) they will write to your GP and liaise with them concerning medications and monitoring. Most of the first line treatments are “cheap as chips” if you have the first few months on a private prescription anyway. If you need further investigations (don’t get hung up on needing MRI’s … they don’t rely on them!) talk to the doc about any cost considerations you face and the possibilities of moving across to the NHS clinic.

Take that first step, you will be in the best hands.

4

Glad you’ve joined the site, welcome!

As I see it the most immediate problem is that your GP is unwilling to refer you to rheumatology but as Jules says, a referral for a private appointment should be a formality, after all, it’s you that’s paying, not the NHS!

At the same time you could also ask for a referral to Dermatology, if the GP says ‘no’ then at least you’ve tried. Unlike some GPs, dermatologists should see arthralgia in a psoriasis patient as a red flag for possible PsA, according to NICE protocols, and they can organise a referral on the NHS.

Incidentally, did you know that if you do get a referral on the NHS you have the right to ask to see a consultant anywhere in the country. This could be as well to know if your physio thinks you need a referral.

I’ve recently moved to Kent too. I’ve only seen my new rheumy once so far but she seems great and is interested in ‘early, aggressive treatment of inflammatory arthritis’ according to her online profile. So I can let you know where she is if necessary at some point but I really think going straight to the experts at Bath is the best way to break the current deadlock.

5

Hello again, dahongbudong. I was one of the people on NRAS who suggested that you come this way.

Sybil and Jules_G are both in the UK and they are our UK local knowledge specialists. I’m in Canada and Janeatiu lives in the US but both of us are familiar with the UK system.

While you are sorting out how to consult a rheumatologist, I would be asking for a dermatology consultation asap as well. If you have used dovonex for your rash, does that mean you already have a dermatologist? If so, get yourself an appointment to have your nails looked at, and while you are there, explain all your other symptoms. The dermatologist can also refer you to rheumatology if they think that you may have PsA, and I’m guessing that they might be able to get you in faster than your GP can.

We know about the “early treatment” mantra vs the long waits for rheumatology. It’s the same in Canada. Just ride it out: keep at it, either via a dermatologist or by asking to see a rheumatologist again. Never mind if your GP is getting bored with you. Trust your body: swollen fingers and painful feet are NOT normal. And you might like to point out to your GP that 51% of people with PsA have inflammatory markers in the normal range. Normal blood work means nothing with this disease.

As for the early inflammatory arthritis clinic, being suspected of PsA should get you in there. Although PsA often fails to raise inflammatory markers in the blood, it IS an inflammatory arthritis. Weird stuff, I know.

Please keep very good records of your symptoms. If you get anything that can be seen, like visibly swollen joints, fingers or toes, take pictures. Without a doubt, they will not be swollen the day of your appointment.

We’re pleased to help you through this very difficult phase. For many of us, the day we were diagnosed was the day we started to get better.

Best of luck.

6

Hi dahongbudong, Nosey Parker calling … just wondering how your physio appointment went and whether you got a referral out of it?

7

Hi Sybil

Been to the Physiotheropy last Saturday, the physiotherapist noticed couple of swelling joints and said I need to see rheumatologist. She said she will refer me to a rheumatologist also a podiatrist, so here I am in Queen Mary’s Sidcup seeing podiatrist today because someone has cancelled his appointment. I believe the rheumatologist appointment must be a bit waiting.

I have been trying to avoid grains, dairy and nightshade for couple of days, my feet do feel a bit better, don’t know if this is the cause.

I am thinking to go somewhere warm and sunny for a month, wondering if that will help to get remission. Need to discuss with my boss though.

I mentioned Bath Royal Hospital for Rheumatic (which is th best to treat PsA as I told) to the physiotherapist but she said that will take me a lot of travel, so I think I will stay in Bexley for the moment unless the waiting time is too long.

8

Result! At last, a referral! That is great news.

Warm & sunny sounds just the job. Some find that hot weather does not agree with them but if that’s what you fancy then I reckon you might well get some relief from a break in warmer climes. Hope your boss cooperates!

Have you checked out rheumys in Bexley? I go to the QEQM hospital in Margate and they seem really good. I’m going to check out the Bexley department now, out of interest. Please keep us in the loop if you get time. Well done!

9

First, OMG, what disappointment–I mean, the long waits, the doctor saying you didn’t have inflammation, etc. Jeez…

I had neuropathy in my feet and nerve tests several years ago only revealed nothing other than it could possibly stem from my back. No further tests were done after that. If your pain–burning, prickling, stinging is in the bottoms of your feet, what helped me was ice packs applied for about 15 minutes at bedtime (or whenever you have a chance to sit or lie down and do that). Then, my doctor prescribed 10-20mg daily of nortriptyline, which stopped the neuropathy altogether. Yes, it can be in the fingers/hands. Mine was less painful in my hands and it basically felt “fizzy”, which is the only way I could describe it (my fingers were stiff and sore, too, but that wasn’t neuropathy). In hindsight, I’m pretty sure the neuropathy caused the serious damage I have in my feet that I deal with now, and it definitely was a symptom of PsA. So, the sooner you treat your PsA, the better. AND, yes, an MRI will show the inflammation and damage in your feet better than X-Rays will. My foot doctor didn’t see much damage on the X-Rays, but after seeing the MRI he had great sympathy for me!