Just read this document, creakyjoints.org/eular-2019...
I found it really interesting and answered some of my existing questions. I certainly feel a little better informed. Found the part about cardio- vascular risk very interesting as it is something I am very concerned about.
Thought I'd share. Hope that's OK since I'm a newbie. Perhaps let me know if it's useful to you too.
It didn't tell me anything I didn't know from the NRAS site. nras.org.uk/
RD is a very complex disease which should never be under estimated, it can make us more prone to other illnesses and it can affect our internal organs such as heart too. Always good to keep informed RosieA as a newbie or as someone like me who has had it a fair while.As poemsgalore says the NRAS site has good information on it. Take care
Yes. Have read NRAS site over several times. It is a great source of information. I suppose old habits make me look at several sources. What I found reassuring was that once in remission the risk of heart disease reduces by some 75-80%. Something I hadn't gleaned before (perhaps just didn't take it in). Sometimes reading other 'styles' enables me to take in more.
Totally agree reading other sources is fine and other styles too, I think you have to keep an open mind and make informed choices about your health and well being.
Rosie, I had a mild heart attack about 15 years ago. When I asked the cardiologist if my RA was to blame, he said no because it was inactive at the time. An angiogram showed no obvious issues and no explanation for the heart attack was offered. Oh, other than the cardiologist nigh on accusing me of snorting cocaine, 
but that's another story. 
Several months back a blood test arranged by my GP showed high CRP markers, which was no surprise as I was flaring like a good un at the time because I'd stopped my meds. When rheumy picked up on my CRP results they phoned to tell me to restart my meds straight away because they were concerned about the high inflammation affecting my heart and lungs .Thankfully my RA is under better control.
Keep well.
I am so sorry you have suffered like this. I have mentioned my concerns re -CV disease to my GP and fleetingly to the consultant, whom I have only seen once. They reckon my risk is low, although my mothers family has a history of very significant heart disease over two generations. One of the papers in the article cited above argues the need to go beyond a simple cholesterol test etc as an indicator of risk. Something I'm going to discuss with the consultant, even if it's just to put my mind at rest.
It's all so tricky really, I know that at the moment I am an 'conscious incompetent' in my understanding of RA. It's a bit like painting a picture - the trick always seems to be knowing when to stop. Is knowledge like that? Thank you for your reply and I do so hope that things improve for you. All the best.
Ask your GP to do an annual CV health check on you, that is supposed to happen with RA patients but rarely does so you might have to insist. And you can also do the Q risk calculation, here..
I like creaky joints, it is refreshingly un-American as many of the US sites tend to be alarmist. Also like EULAR conference. I went once as a patient and it was fascinating....thousands of rheumies all in one place!!
Oh thank you for this. I was wondering if I was paranoid but I agree. Reading the creaky joints web certainly suggests that it would be beneficial given family history. My mother had quadruple by pass in her 60s, her brother died of heart attack in his 50s, so a significant history. How fascinating to go to the conference. I have been impressed by the website, easy to navigate, succinct, informative. A good add on to the NRAS site. I feel a bit like an information junky at the moment. As newly diagnosed I wonder if inventually I'll run out of steam, but I doubt it. There is some good stuff out there, but as you imply some how shall I put it some 'less than helpful'. Have you heard of Arthritis Power?
Have done the Q risk and so far so good.
Arthritis Power is the US equivalent of Rheumabuddy? Did try Rheumabuddy and gave it up quite quickly. To much faff. I keep careful track of my blood test results, and have a piece of old fashioned paper in my RA folder where I write down anything I think I need to tell rheumy at next visit. That’s enough for me.
And not convinced that self selected and un-verified registers have any great reliability.
Must admit to the same. Keep blood records, handy for other professionals (got to have lump in my mouth at hospital checked so will take results etc) + keep notes of discussions / concerns in my diary. I'm a bit of a low tech girl by preference. Had a quick look at Arthritis Power and seems more US driven - potentially great from the research angle. Thanks for the advice
How do you even know your blood test results? I'm never told anything about about mine despite having been tested every two weeks since March.
I just call for results at GP or the nurse is happy to given them to me when I go for my next blood test. Alternatively, you have the right to ask them to print the results out for you, I have done this before to. I then put results in my 'methotrexate' booklet. Good if travelling in Uk or abroad. Plus lets me know on straight and narrow. Although, Dr would let me know if there was a concern. Hope that helps.
Ask! Even if your bloods are taken at the hospital your GP should be sent a copy. Some GPs now also have online access to your records and results.
My GP is not sent a copy, even though I get my MTX prescriptions from him and the surgery pharmacist wants to know the results. A receptionist at the GP surgery recently asked me to get blood results from the hospital and take them to the surgery, even though it takes me over an hour to get to the surgery and back.
I have mentioned to the nurses who take the blood at the hospital that I never get to know the results and they say there are just too many patients to give them out to everybody! Maybe I'll try PALS.
The practice manager has told me that the GPs can now see hospital test results, so I don't know why they wanted me to take them in. (See my previous reply.) I have started the process of being able to access all my hospital records and results from the start of 2019. Had to send copies of passport and proof of address. Processing my application may take from 1 to 3 months apparently (Data Protection - grrrr!)
I've always been relatively healthy until RA was diagnosed a year ago. In the last year no one has checked my BP, height, weight or BMI which I find odd considering all the hospital appointments I've been to 🙄
I also have close relatives that have or had heart disease (GF, dad, brother). The last time I had a CV health check was about 6 years ago, it was ok at the time pre RA.
Time to nudge my GP me thinks!
Me thinks you are right. Like you I was as fit as a fiddle prior to this disease and in my case took it for granted. Each time I go to the hospital, weight, height done automatically. Once I was diagnosed, I phoned my GP and asked for cholesterol check and discussed my CV concerns. They were happy to do so. Sometimes we have to be pro-active and put ourselves in the GPs minds. Alerting them to your concerns and nudging support where appropriate is fine. I hope it goes well for you.
Things are ok thanks, the best they've been for a while.
No harm at all having a chat with your consultant if it helps reassure you. Difficult I know, but try not to worry. I was anxious for a long time after the HA that I'd have another one, especially with RA, but it gradually diminished. Thankfully no problems since, at least so far as my heart is concerned.
Good luck
Thanks RosieA, good to read something up to date x
Yes, it is a very interesting doc, well-written and easy to grasp. Many thanks to you.
Thanks for posting x
I found this really helpful & to pass ok thank you x
Do you think any of this works
Interesting Rheumy Appointment
Just need to let off some steam
