FIrst Rhumey nurse appointment and feeling very conf... - NRAS

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FIrst Rhumey nurse appointment and feeling very confused

Jaxine profile image

Had my first Rhumey nurse appointment today. I was actualy looking forward to having all my questions answered, however I came out feeling worse than I went in!! I've been made aware of the risks associated with RA, namely heart disease and risks to other organs, obviously it's important that I'm aware of the other detrimental side effects of RA, but it did make feel somewhat overwhelmed. However I have low blood pressure, cholesterol low, low weight, healthy diet (although i do need to exercise more) so hopefully I'm in the right place in that regard, but i was surprised to hear that RA sufferes are at a higher risk of cardiovascular diseases. I also learnt What my RA factor score is, in my case 513 which neatly blasted me off my chair! Does anyone know how high the score can go to? In my shock I forgot to ask! I assumed i could get this score down but was told i couldn't which I'm rather dubious to believe. I asked for advice on supplements to compliment my drugs but was advised not to take any just the methertrexate, surely this advice seems somewhat strange? Any thoughts very much appreciated guys.

19 Replies

There is so much information to take in! Welcome to this band of (slightly nutty - well me anyway) people!

Firstly - have a look at the information on the NRAS website as that will answer many of your questions.

2. Raised cardiovascular risk is documented for Rheumatoid Arthritis sufferers, but it looks as if this may be linked to our raised inflammatory markers - if you can get those down to normal levels with medication there may not be a raised risk, especially if you keep your personal risks low (life style etc as you detail).

3. Levels of Rheumatoid Factor (is that what you meant by RA factor?) are fairly irrelevant apart from confirming you are sero-positive. Higher levels don't seem to translate into a more aggressive disease, and sero-negative people can have as severe a disease pattern.

4. Many supplements raise your immune system activity - you don't want to do that! It's too active already and you don't want to take something that counteracts your medication to suppress your immune system. But that doesn't rule out all supplements - if you put the word into the search box you will find lots of posts, some helpful, others less so!

5. Remember most people post here when they are having problems - and loads of people are just getting on with their lives on medication and don't post. It's hard at first, but the likelihood is that you will get there too.

Jaxine profile image
Jaxine in reply to oldtimer

Great reply! Exackly what i needed for reassurment. Thank you.

I would have have said very similar to Oldtimer! I think this nurse was perhaps a bit over enthusiastic, and lacking in skills necessary to see that she was overwhelming you. One step at a time works best with this disease.

Anyway the Rheumatoid Factor is an antibody test, so is just recording that your body has built up these specific antibodies. In a similar way, once you've had TB you will always test positive for TB antibodies. Sometimes with RA the levels can change, but it really makes no difference as it's main use is for diagnosis. And once diagnosed it is of little value and interest. I've been diagnosed 9 years now, and never been re-tested and see no reason to ask.

As for supplements, ask your GP to check you for vitamin D. But apart from that one step at a time. Eat well, try to sleep well, exercise if you can, and give yourself time to come to terms with all this.

Jaxine profile image
Jaxine in reply to helixhelix

Thank you, means alot that you're taking the time to reply, you don't know me as I'm a complete stranger but the fact that you want to offer solice and reassurance is very kind.

It can be overwhelming especially when told things that weren't but should have been discussed at your diagnostic appointment if you haven't read up on your diagnosis. Certainly I would have expected it to be explained about the comorbidities but maybe your Rheumy sensed your diagnosis was enough info for you to process at that appointment. Maybe have a look through the NRAS site, there's lots of info you can read at your own pace, nras.org.uk. Cardiovascular disease is the most common one, I wouldn't concern yourself too much about it if your BP is low (not too low I hope) & your cholesterol is ok or if you don't have family history of heart disease. Low weight & eating healthily is also good but do try to exercise more if you're able & the nurse thinks you're not doing enough. Even swimming or walking in water helps as it supports the joints better than running or similar if you're not used to such exercise. The sooner you get the disease under control is helpful as raging inflammation is never good for joints or comorbidities & why we need the meds we do.

Rheumatoid Factor can be higher, mine was over a thousand (can't access the file at the mo to give exact figure) when I was retested by my new Rheumy after 3 months off my meds. Yours is

high enough though it's not an overly helpful test once you've been diagnosed & only as part of other tests or unless felt required. That said mine was done at each drug monitoring blood test when I lived abroad but not here in the UK. It can lower though as you become more controlled so I'm not sure why the nurse said you wouldn't be able to unless she meant you wouldn't change from being seropositive to seronegative.

Supplements are a moot point. Some can help, others definitely can cause problems such as those that say they support the immune system, we,re taking meds to need to dampen an overactive one. While you're newly diagnosed unless you've been tested deficient in something specific there's little point wasting your money or risking taking something that says it supports your immune system. I take 3, 2 are prescribed, a Vitamin D/calcium & folic acid as I'm on methotrexate. The one I buy is Omega 3 Fish oil as the comorbidity I have is borderline osteoporosis, also the reason for the VitaminD/Calcium, as well as being on steroids long term. You can always ask your GP or Rheumy if you think there really is something you should be tested for & benefit from.

I hope this answers your queries. If not just ask.

Jaxine profile image
Jaxine in reply to nomoreheels

Thank you, I've found your advice very helpful. Again kind to reply to offer solice

Jaxine profile image
Jaxine in reply to Jaxine

I've always been active up until diagnosis 7 weeks sgo. I lost my father a few months ago, moved house, renovated a house then shortly after became ill with a huge flare up ( not knowing what was wrong with me) so the last few weeks I've had to rest. So what I meant to say was I've not exercised much in the last 7 weeks.

nomoreheels profile image
nomoreheels in reply to Jaxine

My condolences. It's a tough time. You've had a long going on & there is the thought that RD can be brought about by stress. I wouldn't push yourself to exercise just now, as I said if you're able. Maybe if you'd like with being used to exercising & feel ok some mild stretching but again only if feel you can, but when flaring it can help. Best to ask for professional help though, your GP or Rheumy can refer you to Physiotherapy.

Jaxine profile image
Jaxine in reply to Jaxine

Oops that last reply was to you not myself!!

Jaxine, just to ease your RA related cardiovascular concerns a little... I had a mild heart attack approx two years after I was diagnosed with RA. The cardiologist at the time told me it was not related to my RA as that was inactive at the time. (those were the days!) That was about 15 years ago during which time I've experienced very long periods of raised inflammation due to poorly controlled RA. Despite this I have had no further cardiovascular issues...yet anyway! :-)

Jan101050 profile image
Jan101050 in reply to wishbone

I have psoriatic arthritis and had a heart attack last June and a stent fitted. I was deemed low risk but it happened anyway. Cardio consultant said more or less due to my arthritis and inflammation . I am on Methotrxate and a biological drug. I watch what I eat also try to exercise as much as possible. Just try to get on with my life and at least now I know the signs if things are not right. I also have long periods of inflammation .

Keep well 😀

wishbone profile image
wishbone in reply to Jan101050

Anxious times Jan!.. obviously when you realise you're having a heart attack, and for a some time after.............................

One of the first things I asked my cardiologist was could my RA have been the cause. An angiogram could detect nothing obvious either.

Am I correct thinking that, unlike mine, your inflammation levels were raised at the time of your heart attack?

Jan101050 profile image
Jan101050 in reply to wishbone

My inflammation markers not raised and very rarely are. Seemingingly this is common in psoriatic arthritis. ECG did not detect anything it was only when I got to hospital and had a blood test the results came back positive. My symptoms were excruciating pain in my jaw especially on excertion. I thought I had angina !

What did your cardiologist say. I was told high inflammation does affect the heart arteries but that was about it. My rheumatologist said the percentage of having a heart attack was very low so I must be one of the low percentage ! I do get anxious sometimes especially with everything else going on in my body. All I can say now my body is controlled by chemicals ! Loads of medication. My heart wasn't damaged so it could have been a lot worse. As they say just keep smiling .😀

wishbone profile image
wishbone in reply to Jan101050

Glad to hear that your heart wasn't damaged and you're doing ok. :-)

I just had intense chest pain. All my cardiologist had to say was my RA was inactive so that was not the reason for my HA, and could offer no explanation why it happened. I suspect the reason was more to do with anti-inflammatories.

Something else that may be of interest is that during my hospital stay I had an ultra sound scan of my heart.. the result being that there was some slight scarring left from the HA. I might well be wrong here, but I thought that scarring of the heart did not disappear, but a few years ago I was admitted to hospital with a serious infection. The docs were concerned that it may have reached my heart so I was given an ultra sound scan to check. Thankfully I was given the all clear, which was a huge relief obviously! :-) The radiologist at the time added that neither was there any visible scarring and she would never have known that I'd had a HA if I hadn't told her, which did give me a few crumbs of comfort considering the circumstances, and this was with what looked like a much higher tech scanner than the one used on my heart some 15 years ago.

May both our hearts continue to beat strongly for many moons to come. :-)

Jaxine profile image
Jaxine in reply to wishbone

Ah thank you for offering reassurance, especially given your difficult journey.

Always good to have a nurse with a sunny disposition 🤔. Hopefully, the methotrexate will work well for you and your life will carry on as normal with just a little prick every week 😂.

The research done more recently into comorbidities is much more positive than say, 15 years ago even. Live your life and if you find your dwelling on the negatives, look at seeing a counsellor. I did as I was raging against it and it worked.

There are some well known supplements that reduce inflammation such as curcunim and black pepper, omega 3 oil (not the same as cod liver oil), boswellia, flax seeds. You could try CBD oil/paste too. None of these will have any detrimental effect so worth a try. If you’re very disciplined, you could try Keto/elimination diets or similar. I’m not! I did attempt vegan for 3 months, did nothing and made me miserable anyway.

I know it’s worrying as you wonder how this happened. I did take Pred which sent my BP sky high, but we’re dealing with that now. I take mtx, sulfa and biologics. I run a business, have a social life, travel to Portugal for a month at a time and general live much as I did before. Walking is still a bit dodgy though.

Life will still be good. The danger is dwelling on the negatives as the last thing you want is to add anxiety and depression in the mix too.

All will be fine 🙏🏼💐💪🏽

Jaxine profile image
Jaxine in reply to HappykindaGal

Yes I agree, I'm actually doing really well comingvto terms with RA given its only been a few weeks. I think for me it's mire of an interest into the condition of RA and the importance of awareness to give myself a fighting chance. I have a counselling background so I'm rather good at giving myself good talking to!!

HappykindaGal profile image
HappykindaGal in reply to Jaxine

Haha - I also have friends that are there to give me a swift kick in the proverbial if I get too doom and gloomish!

Sounds like your nurse gave you way too much depressing information all at once. There’s a difference between being well informed and being scared to death. I’d be happy if my cholesterol was low enough to stop doctors nagging and trying to prescribe statins and my BP was low as long as it’s not so low that I couldn’t stand up.

I went totally gluten free when I was diagnosed with inflammatory arthritis about four or five years ago - yet another autoimmune condition - I’d had enough and decided I’d try anything, besides I was also catering fir a couple of people who were coeliac and was confident in cooking GF. That greatly reduced my high thyroid antibodies - I’ve got an autoimmune thyroid disease - to the extent that I wouldn’t go back to eating gluten - my CRP has also reduced so you could give that a try. I joined CoeliacUK and got their wonderful handbook that lists every GF food known to man - well it feels like that. I eat a really healthy diet - just without the gluten.

So as well as reducing my thyroid antibodies has massively helped with my IBS although I’m not sure about the arthritis although I’m still on the same amount of hydroxychloroquine as when I started it and it’s only now I feel I’m getting a bit creakier so I suppose it must be helping that.

Find an exercise that you like. I do Pilates which keeps me mobile and I go to a gym that is full of old creaky people like me plus I walk as much as I can. My father was 52 when he had his final heart attack. I’ve reached 70 in spite of a load of autoimmune conditions, I work on the theory that I could spend my life worrying about health issues then just as easily get run over by a bus.

You’ve had great advice from others here so use the bits that suit you, try and keep moving and good luck.

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