Hi I'm a newbie

[LisaB17]

Hi all,

I'm new to the site and joined hoping all you guys with knowledge and experience can help someone like me.

I have been having problems with joints in my toes and fingers for 5 years. My RF at last count was only 48 and CCP was negative.

I was told I have inflammatory arthritis a couple of years ago by a rheumatologist and that treatment side effects out weigh the benefits at this stage. My podiatrist has been helpful as my toes are so painful I can't walk properly. He said it arthritis and one MTP joint is so damaged it needs replacing. I'm having the surgery in July. I have been ill for most of the last year with one infection after the other and am so tired I'm struggling to function. Yet I still don't know if I have RA. I had infection in my chest last week and was hospitalised, on the discharge notes were some medical records that stated Chronic arthritis or Connective tissue disease. How after 5 years is there no final diagnosis? Also if I do have RA surely early treatment is key.

Any help or advise would be great, thanks in advance

Lisa

[helixhelix]

Was the rheumatologist you saw rather old? That strikes me as a very out of date approach to treating any of the connective tissue diseases. Yes, there can be an early point where it's about watching and waiting rather than direct treatment. However even then you should be monitored and advised about things that might help (stopping smoking, if you do, losing weight, removing stress from your life and exercise, eating & sleeping properly). And once there is any sign of activity -like damage - then they should jump on it.

But if your arthritis has got to the point that you are getting damaged joints then it's shocking that you've been left to your own devices. Unless of course the damage is osteoarthritis, where little can be done.

Personally I would go see your GP as soon as you can and ask (even politely demand) to be referred to another rheumatologist.

[LisaB17 in reply to helixhelix]

The joint that is badly damaged is the joint the rheumatologist advised is inflammatory arthritis, some joints she stated were osteo. This was based on scans and X-rays. This was my second referral and was discharged as no treatment. On the first referral they said they thought it likely to be RA but in follow up said I was fine. I will make another GP appointment but won't hold my breathe. Thanks for your reply.

[helixhelix in reply to LisaB17]

This is insane! You deserve to be treated better than this so please be assertive with your GP. Not rude, or aggressive, but just politely standing your ground and refusing to be fobbed off. At the very least you need to be given an explanation as to why no treatment is proposed. We're not doctors, so perhaps there are sensible reasons not to offer you the standard drugs. For example other health conditions or things in your medical history like previous cancer. But you need to be told.

Unfortunately some GPs know little about inflammatory arthritis, but push hard for a referral.

I have an eroded joint in one foot, so sympathise as they are very annoying!

[nomoreheels]

Hiya Lisa, welcome. Sorry if I'm being daft but I didn't have your experience as my results were clear & diagnosed promptly but how regularly have you been seen by a Rheumy since your first appointment? It's just given your symptoms &, at that time, an inflammatory arthritis diagnosis it would have been an idea for you to have been re-tested way before now. Do you remember what your inflammatory levels were? These would be taken at the same time as your RF & would be listed as your ESR & CRP. Blood tests only form part of the jigsaw but given that you'd had symptoms a good while & an RF of 48 (under 20 is negative for RF in the UK) plus showing CCP negative, even though blood tests alone don't prove RD it's not beyond the realms you could be diagnosed & on treatment, maybe even your toe not be in the state it is now. Neither has it been cost effective as you're now needing an op not to say pain elsewhere. Sorry but this just seems prehistoric!

I empathise with you having such pain in your feet, it was walking lame which made me go to my GP who suspected RD so took RF & anti-CCP & I was diagnosed a fortnight later. I also have MTP joint trouble & metatarsalgia, other things too due to being under medicated as my Rheumy ignored my reasons why I wanted to her to examine them. That said probably through being diagnosed so promptly & on meds the same day has served me well generally. I'm sure the worst affected joints early on continue to be your most problematic joints.

I do hope your op helps but I do think you should push to have your GP take your RF & ESR/CRP again, or else seek out another Rheumy. I'm rather cross on your behalf, the signs were there.

[LisaB17 in reply to nomoreheels]

I was referred originally in 2011 with swollen and really painful middle finger knuckle. My RF then was only 12. I have never been given any other results such as ESR or CRP. I was referred by my GP again in 2013 hence the inflammatory diagnosis. At this stage my RF had increased from 12 to 48. Since then I see a podiatrist who made me special insoles for the deformity in the toes joints. Then I was referred to a podiatric surgeon because of the pain, he has carried out X-ray, scan and MRI, although he said it is arthritis he didn't say which type but confirmed there is a lot of inflammation which is causing my foot to swell. Every couple of months I feel totally exhausted to the point I can't get out of bed - not sure if that is related. My ankles are painful and swollen, my knee gets so bad I can't bend it but the Rheumatologist said that is oesto. Sorry to hear you also have MTP trouble, it's so restrictive. Glad you treatment seems to be working for you. I appreciate your response Lisa

[nomoreheels in reply to LisaB17]

Fatigue is a known indication of inflammatory disease Lisa, you should mention this, it's important. If you haven't been on the NRAS site I think you may find it enlightening nras.org.uk & in particular this nras.org.uk/what-is-ra-article

Whilst you may have OA it's a different kind of inflammation from RD, I have both, OA is a harder swelling whereas RD is boggier, softer & often with redness. Joints affected by RD also tend to be, though not always, symmetrical.

[LisaB17 in reply to nomoreheels]

nomoreheels, I have visited the NRAS site several times and I don't have all the symptoms of RA. I also spoke to the help line who were amazing.

They suggested if inflammatory arthritis is present then delaying treatment is not a good idea. I went back to my GP as suggested, he said although each time they have tested RF it has increased it is increasing slowly, 12, 29, 40, 43 and 48. He said as I have had a number of viral infections my results may not be accurate and I have to wait 6 months to be tested again when I am clear of infection. Problem is I am currently getting one infection after another and they cannot diagnose that. I had 6 weeks of being really ill, flu like symptoms but so bad I stuggled to get out of bed to go to the toilet - they suspected Glandular fever and signed me off with that but even that was never confirmed.

I appreciate all your help and I am aware compared to some I have little to complain about, all I really want is an answer.

Many thanks Lisa

[nomoreheels in reply to LisaB17]

It begs the question why you're getting so many infections. Seems your immune system is taking a bashing if you're having repeat infections. Have you noticed a pattern, do your joints worsen when you have a virus? How has he been treating them, have you been prescribed an NSAID or low dose steroids at all? Has viral or reactive arthritis been considered? Apols for the questions but it seems most odd, diagnosis of repeat viral infections, your RF on the rise (maybe your GP isn't considering the correlation & needs to look outside the box). If you've to wait another 6 months to be tested again that could allow further joint destruction if you do have RD. I'm not suggesting he's ignoring symptoms so much as unaware, RD is often misunderstood in primary care never mind viral or reactive arthritis. You certainly shouldn't be just left for this repeat & continue pattern, damage is being caused by something. If you've seen the same GP each time if you have the options of others in the Practice could you see another, he/she may just pick up on something yours hasn't.

[LisaB17 in reply to nomoreheels]

I haven't noticed the joints worsening with the infections. The problem started with the suspected glandular fever, then between Sept and Dec last year I had constant chest infection, triggering my asthma. Needed ambulance several times. I spent almost 3 months on AB's and Prednisone which caused me to gain 2 stone. Then I was fine until another chest infection caused me to spend last weekend in hospital.

Even when I feel well my white blood count is constantly elevated. I think the doctors just treat everything in isolation, I cannot get them to see I am constantly ill and I had 4 months signed off of work last year - that on its own is getting me down. Although I suspected this is not linked to joint problems

[nomoreheels in reply to LisaB17]

Apart from the weight gain do you recall if your general joint pain/inflammation eased any when on the pred? Again you had a 'suspected' condition with the glandular fever, that could also account for the fatigue as it takes a long while for some to get over it if indeed it was GF. There just seems to be to be too many loose ends, nobody is looking at you holistically.

Whatever, as you have confirmed inflammation you should really have been treated, it all just seems so sloppy, you don't say you have inflammatory arthritis & send you on your way.

Do you have a teaching hospital within reasonable travelling distance? If so it may be worth searching out a Rheumy there, they tend to be more thorough & holistic & up to date with the range of autoimmunity/inflammatory diseases. I really feel for you, it must be so frustrating being constantly ill with no label to pin how on you're feeling, existing joint destruction &, more importantly, no treatment.

[helixhelix in reply to LisaB17]

You could ask what relationship an antibody test like RF has to infections? I'm not sure that the link is as simple as they say. Another question to ask is whether you can have an anti-CCP test as that is much more precise. As well as insisting on an ESR to look at inflammation levels.

[ITYFIALMCTT in reply to nomoreheels]

nomoreheels LisaB17 Irritatingly, another option in the mix is (potentially) erosive osteoarthritis - inflammation (doesn't show increased ESR nor CRP) and erosions. More common in hands than feet but that might be because it wasn't looked for in the feet (so to speak): discoverymedicine.com/Allen...

Erosive osteoarthritis can present like inflammatory arthritis. Tho' this doesn't account for the repeated infections nor comment on the increase over time in the RF.

[LisaB17 in reply to ITYFIALMCTT]

ITYFIALMCTT , the problem is there are so many possibilities and even reading NRAS and the NICE guidelines and the link you kindly provided, I only know my symptoms and how I feel. I need a doctor to diagnose the actual cause. As a rheumatologist said it was inflammatory I assumed that to be the case and trusted her when she said no treatment was required. I only found out last week from podiatry how bad the joints in my toes have become. As mentioned it was only on my discharge papers that Connective Tissue Disease it noted under Co-morbidities. Its the fact it says Chronic Arthritis or Connective Tissue Disease that makes me think after almost 5 years they don't actually know!

Its all so confusing and frustrating.

[ITYFIALMCTT in reply to LisaB17]

It's maddening that you had "X-ray, scan and MRI" and the surgeon mentioned arthritis but didn't identify which one. Do you have copies of the reports on them?

It was the mention of the inflammation and uncertainty around the type of arthritis that made me wonder about the erosive osteoarthritis and whether or not it's appropriate to leave you without treatment.

The osteoarthritis research group in Leeds is very well-respected and they're increasing running trials where they offer IA DMARDs for osteoarthritis because of some of the overlap with inflammatory arthritis (in the 2nd link, you'll see that they discuss this with knee osteoarthritis as well).

medhealth.leeds.ac.uk/info/...

medhealth.leeds.ac.uk/info/...

Is it at all feasible that you could self-fund an appointment with someone who is well-regarded? Would it seem like an horrendous waste of money if the answer from that was, "It's unclear" (which would be the least useful outcome but almost everything else might be an improvement)?

[LisaB17 in reply to ITYFIALMCTT]

The X-ray and scans were carried out by my podiatrist, I'm not sure if he would know which arthritis I have. I have pre op appointment with him in June so will ask him. I am going to ask my GP to refer me and I will go private as both referrals previously have been to Orsett hospital. Thanks for all the info

Lisa

[Gigi71 in reply to LisaB17]

Hi Lisa. I also live in Essex, I have a friend who goes to Orsett hospital, her treatment seems very hit and miss. I am under King George's hospital, my clinic is held at Brentwood community hospital. My Rheumatotolist is very good, not my original one, I should add. I was dx over thirty years ago and lived in the London borough of Havering then. I've also heard Broomfield Hospital near Chelmsford is good. Not sure if any of these would be an option for you. Good luck. X

[BlightyFiveStar]

Poor you. This sounds so bad. And seems like wrong advice?! The low RF and negative CCP are not definitive as you can have this and still have RA - I do - negative for both but have it, although took a few months to get confirmed.

I found I had to keep sticking up for myself especially with GP - suggest you insist to see a different rheumy. Also I read and referred to the NICE guidelines for RA which say GP must refer you within 3 days and also gives criteria which I think say negative RF should be discounted and clinical signs which signal referral to check for RA. Once I mentioned these guidelines, things happened......

nice.org.uk/guidance/cg79

The first rheumy I saw I paid for while waiting for NHS because was in desperate pain. He was old and pompous, about to retire, patronised me and said the same thing to me as yours did. When I got to NHS apptmt 2 months later, I saw a junior doctor first who was a bit uncertain so he asked me to be seen by consultant next door and I was diagnosed within 5 minutes by consultant. By this time I was very clear about my symptoms and determined not to leave without an answer!

Also, I called NRAS several times and they give me key advice, told me what to ask/ what I was entitled to, and encouraged me. In fact I would not have got to where I am now, I think, without that info.

It is really hard to keep pushing when you feel lousy - I found it very stressful - but please go back and seek second opinion. Good luck.

[LisaB17 in reply to BlightyFiveStar]

thanks

BlightyFiveStar, I have read through the link you kindly provided and by those guidelines I should be offered a referral - especially as the joints in my toes have deteriorated since my last referral in 2013. I will make a GP appointment and maybe go private as the last two referrals took over 6 months.

thanks for taking the time to reply.

Lisa

[thelmar]

Southend Hospital Rheumatology Dept is excellent. It is a teaching hospital and they are involved in various research projects. I was diagnosed about 12 years ago and have always found them to be very helpful. If you are going private for a first appt then I would recommend Prof Dasgupta who is the senior consultant.

[LisaB17 in reply to thelmar]

thelmar thanks for the recommendation, I've googled the prof and found a contact number.

Much appreciated.

[LisaB17]

After a recommendation from thelmar I have a private appointment with Prof Dasgupta in 2 weeks. Hopefully I will finally get an answer. Thanks for all your helpful suggestions.

Lisa