Hello!

I have arrived at this site after taking to the internet to seek other people with Rheumatoid Arthritis - I thought I was the only one and clearly I was so wrong. I've sort a lot of comfort from reading all of your posts (even the less positive ones) - it's nice to know you're all out there (as morbid as that sounds).

So it seems I should introduce myself, I'm Natalie, I'm 23 and I have only just been given a diagnosis of Rheumatoid Arthritis. With my pain felt worst in my hands, feet and shoulders. I take Naproxen and Hydroxychloroquine daily and have just been prescribed Methotrexate and Folic Acid as my blood tests show no improvement. Needless to say my prescription is still sat on my desk - I am totally terrified of it all.

Whilst being a vegetarian for 2 years previously I've started on a vegan diet which I have found to help tremendously with energy levels. It also helps to manage my weight since I find exercise too painful at the moment. I supplement my diet with daily vitamin D and B12 shots.

I'm sure many of you will identify with my feelings of anxiety, terror, denial, even anger at times when you're first diagnosed - I've had a truly overwhelming last few months.

Any advise from your early stages of this terrifying condition is all gratefully received.

Kindest Regards, Natalie

13 Replies

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  • Hello Natalie,

    I'm so sorry to hear of your diagnosis at such a young age. You don't mention what the dose of Methotrexate is. We will all understand your anxiety on starting such a treatment, but Methotrexate is considered to be one of the best drugs for RA and many other autoimmune diseases. It dampens down the immune systems activity so well, that any of the deforming effects of the disease are kept under control. I was diagnosed at 36 (63 now) and wasn't put on Methotrexate for about 13 years, I took NSAIDs, steroids and eventually Sulphasalazine before my consultant put me on Metho. As a result, I have damaged toes, elbows, knuckles and fingers. This can't be corrected. The side effects sound pretty bad, but not everyone gets them. I was put on 3 tablets first, and didn't have any problems. But as the dose was increased, I did get nausea, dizzy spells and fainting fits. So my consultant put me on subcutaneous injections (similar to those diabetics use) and since then I've had no problems with the drug. As you will have a blood test every 3-4 weeks, they will be keeping an eye on your liver function and if the drug doesn't suit you, you will be taken off it. This is just the beginning of your RA journey, and there are other drugs that can be used instead of MTX should it not work for you. May I suggest that you bite the bullet, start taking it and see how things go.

    Sending you big hugs and wishing you all the best for your (unwanted) journey. Come back often and tell us how you get on, you will make many friends and receive lots of support here among your RA family.

    poemsgalore xx

  • Hello and welcome Natalie. So sorry you've been diagnosed with RA but hopefully, once you take it you will find that the Methotrexate does work and helps you enormously. I found that my RA symptoms were very well controlled by Methotrexate and Hydroxichloraquine together but unfortunately I was not able to tolerate either of them for more than a few years.

    I always think it must be very hard to have this disease when you are young - mine started when I was 47 and that was bad enough. But when I was your age I had many other health problems and so I do at least know how it feels to be young and scared.

    I also think it's great that you've been proactive about your diet but please make sure you are getting enough minerals and vitamins on top of the D and B12. I found that cutting out gluten and dairy plus refined sugars made a lot of difference to me as well - mainly in getting the weight down.

    Take care and keep posting,

    Twitchy

  • Hi-- my name is Jacki , and was diagnosed in September. Sorry that you have had the same shock throw at you- it's very scary and I found the drugs the most frightening aspect. I sat for ages looking at them in the palm of my hand , before actually swallowing them. I was terrified but I am now on week 3 and can honestly say , apart from nausea, -- which my gp gave me tablets to control, - I have had no side effects. My hands are becoming less stiff and swollen. I dont know what I would have done without advice from people on here- and also the help line on the NRAS( thanks to you all) . I hope you are soon in a brighter place love.

  • Welcome to the group Natalie, now you know your not alone lol, there are lots and lots of lovely people here who help us all at times of need.

    Join in and enjoy.

  • Hi,

    I was diagnosed at the same age. It was such a shock, going from very healthy to having- seemingly - a disease that old people got. I know that it wrong now, but it was heartbreaking at the time. 30 years ago the treatment was a lot less proactive then it is now, the drugs not so good, the medics not so clued up, and there were few support networks and certainly no internet (now I feel really old lol).

    I want you to remember a few things:

    Access all of the wonderful support networks you can.

    If you feel you're not progressing, call someone.

    Ask questions; write down what your problems are before you see GP/consultant/specialist nurse and ensure you come away with a plan of action.

    Keep active, even if you're feeling stiff. Some gentle exercise is better then being immobile.

    Keep your diet good enough to ensure you're well nourished, ask about your blood iron levels as anaemia is common with this type of disease.

    You seem to be aware of many of the pitfalls that were seldom recognised as an issue: B12 and Vit D, so well done (it was only a few years ago that a consultant is asked didn't even know about vit D, luckily he's retired).

    Get onto the methotrexate. It's important you start to protect your joints. Do it now, or as soon as you can. Protect, protect, protect!! You don't have to be on it if doesn't work, or you can't tolerate it, there are other drugs. Lots of people are good on metho, others not, but you have to find out what works for you!

    I'm now 52 and still really active. The disease sucks, there;'s no way of hiding it, but if you manage it well you should achieve anything.

    Good luck, and remember: Protect those joints!!

    sdm x

  • Hi Natalie

    I was diagnosed at 26 so know how you feel. You have some good advice already but wanted to add that I have been on methotrexate ( mtx we call it) since 1995 without any problems.

    Unfortunately you have this disease now and you need to take something to stop it. I know the drugs are scarey but so are the consequences of your disease being out of control. Think about joining National Rheumatoid Arthritis Society ( NRAS) they are an enormous resource and support for us and fight our corner.

    Take care and remember we are here for you. Kikideelili x

  • Hi Natalie

    Great to see some really supportive replies from your fellow Health Unlockers which I hope help. Another way NRAS can help you is if you want to actually talk to someone who has been on medication and lived with RA for a while we have trained telephone support volunteers which we can put you in touch with that will call you at a mutually convenient day and time. Just talking to someone who has been there and done that etc. can be helpful. Just call the NRAS helpline on 0800 298 7650 (Mon- Fri 9.30- 4.30) and they will make all the arrangements. Also there are some interesting video clips on nras.org.uk/using-methotrex...

    regards

  • Hi Natalie,

    It's never good to welcome someone else to this site, because of what we go through, but on here you can get info from years of experience with this terrible disease and the different meds & courses of treatment we all get, albeit they are similar but different in other ways..I hope you are successful quickly in finding the correct drug & dose for you to control your RD. And remember this is a place where you can moan all day long and no one will mind :) Everyone is amazing on here and have helped myself & each other out through some rough times & will continue to do so...hope you are well x

  • Hi Natalie and welcome.

    I am new to this site also, I found it 3 weeks ago when searching for Mtx and the side effects. It is great to have a reference for questions and support from people going through or have been through the same ordeal with pain medication and side effects and like people before have mentioned just a moan from time to time.

    I have had RD for 4 years now started on hydro but couldn't get on with it so was started on sulfazalzine which worked very well up until the beginning of this year when I experienced flare after flare. I tried to delay going onto Mtx as I to was scared of all the side effects that I had read, even telling my consultant I didn't really have much pain, (which was a massive lie), but he did ultrasound on my hands wrists and feet, these ultrasounds didn't lie. I had significant inflammation in all these areas luckily no bone damage but he said I must start mtx to prevent any damage occurring. I am only 43. So I started on 15mg of mtx along with sulfazalazine and folic acid 6 days. I have only had headaches since taking them so my nurse has reduced it to 10mg, which I must say seems to be working. (touch wood). The inflammation has reduced also as I can now wear my wedding ring which I could not before.

    Good luck with it, if you don't try it you wont know if it works, speak to your nurse asap if you feel you have any problems she can them maybe change the dose around. Hope it works well for you.

    XXX

  • hello and welcome, When you are first diagnosed sometimes it can be like a death, you go through a series of emotions starting with denial and then anger 'why me?', grieving and feeling sad and sorry, then you start to accept and become more proactive in your health. If you can find a walk-in or sign-up support group in your area, I would highly recommend this, just being with and listening to others is comforting and you can usually gain lots of information this way, also read as much literature on your condition as you can, become an expert on your own body. Just having this info can make doctors appointments go much easier if you know what questions to ask and have a sense of power knowing all you can so you feel confident to discuss options and treatments with the doctor. Your relationship with your Rheumy will be paramount, i think most specialists are great and worth their weight in gold. Once in awhile you get one that talks at you, not to you and is not a good listener. If you already know lots about RA, then you can be more assertive, ask the questions that you need to ask, even question why they are prescribing so and so.

    You are very young and you may also want to start a family in the future, tell you Rheumy this right off the bat, there are some drugs that have a very long half life (they stay in your body for more than a year after you stop taking them...I believe Arava is one of these) maybe someone else can pipe in here about this.

    This way your medications can be customized and tailored to you in the best way possible.

    Some of the drugs seem ominous, but most have been around for a very long time and are proven to work really well. No person with RA will have the same treatment plan, RA feels different to everyone, and can present very different when you compare two people.

    This site was a blessing for me, I find the ones that understand you the best are the ones going through, or have gone through the exact same things as you. I love my family very much, but because they do not have RA it is sometimes difficult for them to truly understand my pain.......I think you will find this site a wealth of knowledge and a great site to find understanding and acceptance and it can certainly help you through the rough patches we all encounter at some point in our disease.

  • Welcome to our world naterlie we always here,to lend a ear sad that you so young ,

  • Yes thin and snapping

  • Two things will help get your disease under control. Patient compliance, & the patients tolerance for the medication. I have been on mtx years now and I do get every tired the following day but other than that no side effects, try not to stress about things that haven't happened yet. There are great medication available & if one doesn't work, another will. Don't be scared. Be good to yourself and listen to your body. Sleep if that's what you need.

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