Soon after I was given Inflamm Arth diagnosis I saw a Rheum specialist nurse who proceeded to tell me that the Rheum Dr had asked her to explain all about RA and to be aware that I'm at risk of heart disease due to this. I was put on Hydroxychloriquine.
Why does Rheum Doc say, 'Probable' in letter? I'm a bit confused
I was told I had inflammatory arthritis probably RA and started in sulpha then mtx. Also had the chat and info from OT and rheumy nurse. However after a hellish 3 months on these meds I was told not RA and have now tested positive for lupus. So I know how you feel. I think it can take months for a proper diagnosis so try not to get bogged down and keep an open mind until you are seen again. X Jo
OK that's helped thanx Jo. I couldn't understand why I was told all about RA so that I understood the disease but then the letter said 'probable'. I guess I'd rather they take their time really. Was diagnosed Feb/Mar this year. 4 yrs ago my GP saw how red n swollen my knees were, blood test pos for Rheum Factor and she wrote in notes RA. Had mean Rheum Doc couple years ago who was just plain cruel but she's left now and I have a lovely Doc now. Lupus is worse than RA isn't it?
I was first seen in march too and only found out today that it definitely looks like lupus. Starting on hydroxy tomorrow. I think from what I have read that lupus can range from mild to severe. So far I only have intermittent sore/swollen joints, raynaud's, fatigue and sometimes skin flares up too. And depression that came on over past few months. (That makes me laugh as it sounds like quite a long list of symptoms.) I am hoping to have a mild form as I don't appear to have any renal or cardiac involvement. If anyone else has any more info I would appreciate it too. x Jo
I think there may be a Lupus Health Unlocked too - or certainly there will be a Lupus site Jo. Poor you it must be hard to be diagnosed with one disease and then to find you have another in a way because it's so hard to come to terms each time.
When my rheumy diagnosed me last November (the last time I saw him face to face) he said "for now we will make a working diagnosis of RA - but try to keep an open mind as this diagnosis may change and it's early days". Looking back now I realise that it was my swollen and painful knuckles that gave the pointer to RA because it's quite special to this disease.
I think RA can be as severe as Lupus but for many both diseases comes in a milder form so here's hoping yours is in that category. My late mum had a friend with mild Lupus and she seemed very active and well when I met her despite having had it for many years. I know that the Spoon Theory was invented by a woman with Lupus but can just as easily be applied to people with RA or MS. It's worth googling and reading it and sending to your close friends and family to help them understand the variability and systemic nature of these conditions.
I take Hydroxichloraquine and MTX and find after 8 long months that I've reached an even keel so I really do hope the same happens for both of you. The term inflammatory arthritis covers RA, Lupus, Ankylosing Spondilitis and although they differ in how they affect the joints and which joints are most commonly affected it is best to try and keep an open mind because all are autoimmune and there are many overlaps and some people get more than one of them. Good luck. Tilda xxxx
Hi there,
RA can be a bit of a #%>€$ to diagnose, as there are lots of similarities between the types of arthritis and there's no single conclusive test. sometimes it's only when the docs see how you respond to treatment that they can be sure what you've got. Also, you can start with general symptoms that then develop into more specific symptoms of one of the types and for the lucky few it goes away again! So many docs do seem to stay on the fence. But treatment often starts the same, so shouldn't make a huge difference, although it is nice to have a name to put to your disease!
For the vast majority of people, RA can be relatively mild and/or responsive to the drugs. For a bunch of people it's worse and hard to control, and for an unfortunate minority it's dreadful. (i'm in the slippery category I think as it keeps sneaking past the drugs, but not in the dreadful group thankfully) So chances are that you'll respond well. And really don't fret about heart disease. Yes it's more of a risk for us in theory, although with all the new drugs it may not be as much as it was. But knowing that it's a risk gives you the chance to keep an eye on your blood pressure and cholesterol, so you can take action if needed. NRAS have a useful article on this. Polly
Thanks Polly and Tilda. I am going to take this all in my stride. Since coming off mtx and prosaic kicking in I am feeling human again, much to the relief of my husband who was beginning to think his fun wife was a thing of the past. Thanks guys. X Jo
(* prozac) sending this from my phone as teenager hogging the laptop. X
Sorry all but what is mtx?
It's the abbreviation we tend to use for Methotrexate. x
Aha! Thank you Beth
some shorten it to "meth". But that makes me feel that I'm at risk of having to lurk in doorways trying to buy illegal drugs.....Px
Yer, meths was band from use in chemistry lessons back in my school days - I did wonder what you all were on! was gettin' jealous! LOL!
Exemption from hosepipe bans.
University College London Hospital
hydroxychloroquine - what's the point?
