any advice welcome

Gwynedd

Hi all,
I'm new to the site so I might be posting in the wrong place!
For the past few months I've been suffering with stiff painful finger,wrist and elbow joints., my knuckles have changed shape I.e pea sized lumps on them. I'm also extremely tired. I went to the docs last week, was given various blood tests for RA which came back negative. He's advised that I go home and wait another 3 months then come back to be retested. In the meantime I'm in a lot of pain and feeling very frustrated with having my life altered in such a big way.
Does anyone out there have any advice for me, should I wait the 3 months? Or should I push the issue? The doc didn't even examine my hands!
Having found this site has been a revelation to me, so a big thank you to all who contribute.

[Deleted User]

Welcome to Arthritis Care Forums

As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

Best wishes
Mod B

dreamdaisy

Hello, it's nice to meet you but I am sorry that you have had to find us. GPs know a little about a lot - yours might not be aware of is that auto-immune arthritis, such as RA, can come in two different kinds, sero-positive and sero-negative. The blood test that you had probably game back as a sero-negative, i.e. nor positive rheumatoid factor was found, so his conclusion is that you may not, hence the 'come back and see me'. I have a sero-negative kind but this was only discovered after a referral to rheumatology from orthopaedics. Even then it was not given a specific name, I was classed as having an auto-immune inflammatory arthritis : there are many kinds and it can take some time for an accurate diagnosis to be made.

I know that AC publish a range of information leaflets about arthritis in all its shapes and forms but I am not computer-savvy enough to do the blue link thing - hopefully someone who is will come along later today and oblige. My thinking is that you could take some of these info sheets to your doctor, my feeling is that you should be referred to a rheumatologist - they re the ones who know a lot about a little.

The tiredness is a common factor with all arthritics, the body is fighting pain, pain disturbs sleep and other aspects of our daily lives. When an auto-immune arthritis is active that can also make tired. I have to go now but, like Arnie, I'll be back. DD

Gwynedd

Thank you for the advice dreamdaisy. Very much appreciated.
Would you recommend that i go back to GP next week? Would it be reasonable to ask for an Xray?
I asked to be referred to a Rheumatologist, he said that there'd be no point as my results were negative. I will go armed with the info you have suggested re. seronegative arthritis.
thank you again

stickywicket

I endorse all that DD has written. GPs are our first port of call but they don't know much about auto-immune forms of arthritis. Yours has done the right thing by doing your bloods but I realise, from reading on here, that many GPs seem to think that that's that and, without a positive RA factor, there's no point in referring a patient to a rheumatologist. You say yours did 'various' tests. Did (s)he say what they were all for?

Meanwhile you are in pain, worried and frustrated. Were you given any medication such as anti-inflammatories or pain dullers? (Many of us call them that because that's all they do. They take away the raw edges but not the core.) I wouldn't put much by the lack of examination. In my experience GPs rarely do that now. The tests tell them more (provided you are sero-positive :roll: ).

What you do next is really up to you. You are right to want to get a grip on it asap and you can insist on a referral though that might not endear you to your GP. And even rheumatologists are not guaranteed to be able to diagnose difficult cases immediately. Or maybe you could, as DD suggested, read up (http://www.arthritiscare.org.uk/PublicationsandResources/Arthritisbasics/Typesofarthritis ) on the various types of arthritis and then go back to your GP and talk things over with him / her. If ever I have a problem with a diagnosis or medication I always go back to my GPs and find them very helpful and informative just to talk things over with. At the end of all that the ball would still be in your court ie you could still ask for a referral.

As for having your life altered – I hope that (a) you don't have an auto-immune arthritis and (b) if you do then the medication will get a good grip on the disease and slow down its progress. However, there is no cure, our lives have to be continually modified and they do involve an awful lot of patience and waiting.

Gwynedd

Thank you for replying sw , I know some of the tests were crp ( not sure what thats for)and for anaemia ,I'm unsure what the others were.
I was prescribed Naproxen, but with no effect yet. I'm also concerned that these tablets could interfere with any further blood test, or is that not the case?
Thanks for advice and understanding

dreamdaisy

Hello, I am sorry for not coming back before now but arthritic life overtook me (and not for the first time ).

CRP is a measure of inflammation (as is ESR which might have been one of the tests) and as Naproxen is an anti-inflammatory it would hint that it was raised. If the next set of bloods show that your figure has been reduced that is indeed confirmation that something of the inflammatory kind is going on. How much has the GP given you? A week, a fortnight, a month or longer? It can take time before any difference might be felt - these things rarely work overnight. If you have not been prescribed a stomach protector with it then please ensure you take the medication with food, these things can be harsh on one's tum - and always wash pills down with water.

I lost five years of treatment because I believed my then GP that my fat left knee would sort itself out: I have a lifetime of dealing with doctors and had never been let down until I crossed paths with that one! If I could go back in time and advise myself it would be to chase up and keep asking, rather than assuming that she was right. This day and age is very different because, with the internet at one's fingertips, patients can now self-diagnose (and very often do regardless of their lack of medical knowledge and cheerfully assuming that everything they read on the net is true). I daresay the net is sending its siren song to you so do sensible research on sero-negative arthritis, using reliable and responsible sites such as NHS, Arthritis Care and Arthritis Research, and talk to us. Many of us have been in the front-line for years (I am in my nineteenth) and have a good understanding from the patient's perspective of what we are dealing with. DD

stickywicket

CRP = C-reactive protein and measures inflammation levels. It's a standard test for arthritis. Anaemia? Your GP might be testing for other things or it might be because RA (and maybe other auto-immune arthritises but mine is RA so I know about that) can lower our iron levels.

Naproxen is an anti-inflammatory so yes, it could mask your true inflammation levels in a future CRP test but sometimes we just have to achieve a balance between the desirable and the necessary. As DD says, if a future test indicated that your levels had dropped it could simply mean that, yes, they were high but the anti-inflammatory reduced them so you definitely have something going on. If you were told to take the naproxen regularly, rather than just when things were really bad, you should also have been prescribed a stomach-protecting med with it – usually omeprazole or lansoprazole. Naproxen can sometimes take a while to kick in but, if it's doing nothing, you can go back to your GP as there are other anti-inflammatories.

LemonMerigue

Hi there. I does seem something is afoot. I have an auto-immune arthritis so the only things that will show up in a blood test is levels of inflammation. If the Naproxen doesn't work for you I recommend going back to your GP for a different one. I too found Naproxen unhelpful and found that Diclofenac to be much more effective. Are you prone to other auto-immune conditions? Eczema or psoriasis?

In my experience, my GP didn't take me seriously (down to my age), he even suggested I had sciatica. I was down at the surgery every week until they referred me. However, I realise not all GPs are as dismissive as the ones we have here. If you feel you aren't being heard, go back. And keep going back until they listen.

theresak

Hi there, sorry I haven`t said hello before now - not been too good myself lately.

Three months is quite a long time to wait if you are in pain and needing a referral. As others have said, if you are taking regular anti-inflammatories you really should have a stomach protector. I take Omeprazole, which seems to work for me. There are alternatives to Naproxen, though my GP deems it the least harmful of its type.

Hope you can get things moving sooner.

Gwynedd

Thank you all for your advice.
I have booked another doc appointment for tomorrow,
I'm going armed with more knowledge and a determination to be referred. I've had to take the day off work due to swollen hands and elbows.
The appointment is with a different doc so I'm hoping he might be more enlightened.
Thanks again, I'll keep you posted

dreamdaisy

I hope he listens and respects your newly-acquired knowledge . Please let us know how you get on, yes? I wish you well. DD

barbara12

Hello Gwynedd
Sorry I am late seeing this, but glad to see the others have given you lots of advice,I have been going through the same for a couple of years now..they cant make up there minds...anyway welcome to the forum, and I hope you get some answers very soon..

LemonMerigue

If I could cross my fingers for you I would! But I hope your appointment brings a positive outcome.

Let us know how it goes?

dreamdaisy

I've been thinking of you. I hope today was a more positive appointment for you and you have your referral. DD

Gwynedd

Hi all, I can't tell you how touched I am by all your support. It's so wonderful to know that there are such caring people out there.
My appointment went really well. Different doc! He immediately told me I needed a referal. I didn't even need to produce the Arthritis Research guidelines that I'd taken with me.
Has anyone got any ideas how long I'll have to wait for the appointment ? To be honest I'm just so relieved to have been listened to though.
Once again big thanks to you all. This forum is a real gem
Xxxx

stickywicket

I'm glad your appointment went well and thanks for letting us know. Remember you can see any GP in the practice so, if you have a better rapport with this one stick with him. It's important to have a good relationship with the docs when you have something that necessitates regular visits.

I'm sorry, I don't know how long it will take for the appointment to come through. These things vary from one hospital to another. I hope you can get some answers though. Please keep us informed and remember we're here for support in the meantime.

dreamdaisy

I cannot remember how long it took for me to be first seen by a rheumatologist and, as Sticky says, it varies from area to area, hospital to hospital. From reading people's threads on here I estimate it could be anywhere between a month to three months, maybe longer. The main thing is that you are now 'in the system' - welcome to our appointment-based world.

I cannot remember if I've told you this before (so if I have I apologise) but now is the time to start keeping a diary (nothing too lengthy!) charting the levels of pain and tiredness (or general fatigue), what exacerbates matters and what helps. This is not to establish a pattern because there isn't one but to give the rheumatologist a better idea of how you are being affected on a day-to-day basis. DD

LemonMerigue

That's fantastic you got the referral!

As the others have said, appointments can vary. I had to wait about 5 weeks for mine. It seemed like a long time but the thought of actually getting somewhere was comforting.

LynneS

Hi - I'm newly diagnosed with zero negative arthritis, so I have a lot of empathy with you.

I'd had a number of negative blood tests too. The thing that seemed to lead to a diagnosis for me was when the consultant asked for an ultrasound of my hands.

I was quite daunted when I was first diagnosed, but I started on methotrexate 3 weeks ago (with no ill effects so far) and was given a steroid injection to tide me over until the meth starts to work.

My fingers are still 'sausage like' but they are less painful.

I hope your appointment comes through soon.

ps - If you've found a good doctor my advice is to try and stick with them. My consultant was very clinical primarily focusing on my treatment, but my GP has been fantastic answering all the questions I had following my appt with the consultant!!

Gwynedd

Hi guys,
It's good to know I'm in the system now. My Gp called me yesterday to say I was anemic, I've read that can be symptom of RA as well. I've got an appointment on Tuesday with him where I presume he'll prescribe iron tablets .
Thanks Dreamdaisy I've started my diary of symptoms,good idea. It's a good way of reflecting on how the pain has been.
Thanks again all. I'm not alone

dreamdaisy

I used to keep a diary after my first open synovectomy but now, 19 years in, I can't be bothered. It can be very tempting to blame everything that happens to us on our arthritis but I had bouts of anaemia before the disease rolled up. An easy way to improve matters is to increase the iron in your diet (liver, various veg and some nuts are a good source) and perhaps talk to your GP about a course of iron tablets - it's best to do that rather than get some OTC (over the counter). Anaemia can exacerbate our tiredness levels so it's worth sorting ASAP. DD

stickywicket

Yes, he may or may not prescribe iron but I'd leave it in his hands rather than a DIY approach Treating an iron deficiency can mask other problems so, unless it's dangerously low, he might prefer to just leave things as they are for now. As DD says, though, going for the dietary approach might help. It seems as if the wheels are in motion and I'm pleased for you.

theresak

I'm so pleased you have your referral, and hope you don't have to wait too long to be seen. As others have said, it varies from place to place.

I have a hugely supportive GP, who kept me sane after the early days of diagnosis, so now you've found a good one, stick with him.

I need a course of iron tablets from time to time, I think it's fairly common in RAers.

Gwynedd

Wow! Great news. I've had a referral already!
I can't quite believe it, my appointment is in just under 2 wks time. I've been having a bad few days so this is very welcome news.
Must be quiet in the rheumatology department of North Wales, whatever the reason I'm happy.
Any advice on what to expect would be greatly appreciated. Thanks x

stickywicket

Excellent news

I'm afraid I can't help on the 'what happens next' front as it's so long since I was first diagnosed. I remember one newbie wrote a very helpful, detailed thread about her first visit but I can't remember who she was :oops: and she no longer posts as I believe it was decided she didn't have arthritis. You might get more replies if you start a new thread with a more explicit title.