Feeling ropey!

Hello

Can I just say thanks to everyone that replied to my first blog, the support was amazing!

I took my first dose of MTX on Saturday and laid off the folic acid after being sick when I took it Friday, took another dose of folic acid and stayed determined to get on with day and forget about it however had the same symptoms as before gurgling tummy, sickness. I did some googling and found that you can get these side effects especially in high doses anything over 1g is considered high, I'm on 5g.... Maybe it's just a case of my body getting used to it but if it carries on I will stop taking it.

Rang my GP this morning for advice they have nothing yet back from my Consultant so know nothing about what I'm on but they are going to get duty doctor to ring me....so rang my consultant's secretary and got an answer machine but did get the RA helpline number which was also on answer machine and to ring back this afternoon....Grrrrrrrr!

I've not gone to work today, maybe I need to take some time off to adjust to diagnosis and the meds and I have worked all the way through before all this .....I will have to see.

My friend texted me earlier to say that she had to have her 9 month old puppy put down over weekend....so that bounced me back down to reality, he was gorgeous.

Thanks again for the support, sorry if I'm a bit whingey and I hope you're all having a good day.

Maddie xxx

15 Replies

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  • Hi, You are not having a great time at the moment, I am a bit unsure of when you say you were taking your folic acid, as you do not take that the same day you take your MTX. When I was taking MTX, I was still at work so to help combat everything I would take the MTX on Friday nights to enable me to have the weekend for recovery if required. Maybe you could try that, speak to your GP first though, before changing the day as they may have other thoughts on it. You may have caught your rhumey team on the morning they have clinics, I have done that in the past, it is very upsetting when you want urgent action. Maybe try again later.

    It's awful when babies and young children die even if that happens to be in the animal kingdom, the feelings of bereavement are the same. I have had cats all my life so I can emphasise with you and your friend.

    Don't apologise for stating all your troubles here as we all do it, and it's better us than your family members. One we are away from your situation, two we know how you are feeling, three it means your family can still see the sunny you. Take care. xxx

  • You might find it easier to take your mtx in the evening and don't take the folic acid until the next night. By taking these drugs at night you are asleep if there is anything going on with them re;side effects. Hope this is of some help to you and i hope you soon feel brighter.xx

  • Hello Georje

    Thanks for you reply.

    I was told by the Professor to take the Folic acid 7 days a week, I didn't take it on Saturday the day I took MTX as I didn't want to be ill and risk throwing up the MTX, took Folic acid again on Sunday but haven't yet taken it yet today until I've spoken to my GP for advice. I did give it a thought that the Rheumy helpline team maybe in clinics... So thanks for that :)

    It was good to read to that you stayed working when you were taking MTX as I'm thinking that may be the best option for me so not at home dwelling and keeping to my normal routine as much as I can.

    It is devastating for my friend, he'd been unwell with epilepsy that they couldn't get under control and he was so young...bless him.

    Thanks so much for support and advice Georje and I hope you are ok.

    Maddie xxx

  • Meant to say did'nt give it a thought! Sorry to bang on about a folic acid "supplement" when we are also taking much more serious meds, but it does make me feel urrrrrgh. X

  • Just to say Hi, I was away last week and hope things settled down for you. xx

  • Hi Allanah

    Thank you for the welcome.. interesting to read your "about me" I too love concerts and theatre and have always wanted to go to a festival especially Glastonbury which I'm not far from....have only watched from the comfort of my sofa so far!! :)

    Hope you are well.

    Maddie xx

  • Just a phone call from a lovely Rheumy nurse, she answered all my questions, told me all about my results, explained more about my condition and said to lay off the folic acid for now. Yay! :)

    Seems like I'm one of the few who can't tolerate folic acid.

    Thanks again for support.

    Maddie xx

  • It possible that it may not be the folic acid, but one of the other ingredients in it. Funny you are getting sick from that, and not from the MTX - its usually the other way round!

  • Maybe.... I know it is but everyone is different and has different reactions to things and its not unheard of.

    Thanks for reply :)

  • Did nurse have any suggestions about what you should do instead? Although maybe not necessary as you'll probably take to MTX like duck to water with zero side effects. Perhaps you are naturally so stuffed full of folate you don't need any extra.....we're you brought up on spinach and pomegranate?

    My last dog was an epileptic, and was a bit hard for both of us but luckily we did manage to get it reasonably controlled. Although I do remember rather long nights having to hold onto her for hours and hours to stop her fitting. Can't imagine what it would have been like if it had been uncontrolled, so sounds as if little choice. Polly

  • Hi Polly

    I said to the nurse should I take the folic acid just the day after my MTX and she said no leave it for now as I'm on a low dose of MTX at the mo the side effects should be minimal but any problems to ring helpline again, she was lovely. I managed to get the helpline number after I bit of ringing around as the GP didn't ring back!

    I don't know about being stuffed full of folate but I'm a veggie and spinach is one of my favourite veggies???!! When I first started getting pains in my hands my hubby would say "it's coz you don't eat meat". He put most of my problems down to that :)!!

    I don't know the full details about my friends dog, he'd been unwell since Oct and was fitting pretty regularly, he had a massive fit on sat and never came round properly will find out more tomorrow. That must have been tough for you with your last dog but they are so much part of the family.

    Thanks Polly

    Maddie xxx

  • Sounds as if you've got a good nurse, that really helps. And yes, do take it easy while you adjust so don't feel bad about staying off work if you feel tired. Getting a diagnosis of a chronic condition does take a bit of getting used to. But I think looking after yourself to start with makes a huge difference long term, and you'll soon be back to normal (apart from the pill bottles of course...). Polly

  • Hi Polly

    The nurse I spoke to was yes...very good, she explained things in a way I could understand as I don't understand any of the jargon yet but I'm learning, she did mention about being seronegative and my inflammation marker just above normal, but the scan had picked up inflammation in my hands....any help about in understanding all the different tests they do would be appreciated.

    Went back to work today and my line manager was great, she was away last week so today was the first time I'd seen her since my diagnosis.

    Thank you Polly :)

    Maddie xx

  • Hi Maddie21

    Being seronegative means that you have tested negative for two proteins that often appear in the blood of those with RA. These proteins are called the rheumatoid factor, and anti-CCP antibody. It can make it more difficult to diagnose RA if these proteins are not found in the blood, but the treatment for seronegative and seropositive RA is essentially the same. The only difference is that one of the newer biologic drugs appears to not be as effective for those who are seronegative. We have an article that goes into a bit more detail (and hopefully is not too full of jargon!) that you may find of interest: nras.org.uk/about_rheumatoi...

    Two other blood tests, ESR and CRP, measure the levels of inflammation in your blood. Usually in active RA inflammatory markers will be high and as treatment begins to work will hopefully begin to drop. What is 'normal' will vary between individuals and so often it can be more helpful to look at patterns in your blood tests. Inflammatory markers are not specific so levels can be raised for reasons other that your RA (an underlying infection for example). We also have an article on the different blood tests used in the monitoring of RA that might be helpful: nras.org.uk/about_rheumatoi...

    An ultrasound scan would be able to show up any inflammation in the joints. Sometimes inflammation will not result in visible swelling of joints so a scan would enable your rheumatology team to obtain a detailed image of the structures and any inflammation beneath the skin. Again we have an article on the imaging techniques commonly used in RA which might be helpful: nras.org.uk/about_rheumatoi...

    I'm glad to hear you were able to speak to the nurse about your folic acid dose. I hope you continue to get on well with the methotrexate and enjoy using HU!

    Kind regards

    Sarah Kate

    NRAS

  • Hi Sarah Kate

    Thank you for you reply...it's VERY informative!

    I will check out the links also.

    Maddie

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