Newbie

[Smurf808]

Hello. I'm 23 and just been diagnosed about 3 weeks ago with rheumatoid arthritis.. I'm now on methatrexate once a week and prednisolone daily. I feel like this is going to change the rest of my life and there's nothing I can do about it. I have been having trouble sleeping at night and wake about 4 times a night to pee. Im constantly tired and can hardly bring myself to go to work. Has anyone had these side effects ?

[Hidden]

Hi - sorry you've got RA and are having other problematic symptoms. Have you had your blood sugar levels checked recently just to rule out diabetes? My friend has just been telling me on the phone about her 18 year old son (my son's friend) being diagnosed with type 1 diabetes two weeks ago - he was drinking so much liquid and peeing constantly too.

He's now injecting four times a day and will have to do for the rest of his life. I'm partly telling you this so you know you're not alone in having your life turned upside down by a horrible disease at a young age. It will get better for both of you I'm sure but don't just assume that every new symptom is RA or MTX related - see your GP to get checked out.

I know RA can make people very fatigued until the drugs kick in as I hope they will soon for you. It's thought to be caused by systemic inflammation.

Twitchy

[hawker955]

Do not despair. The condition is painful when uncontrolled, but probably most of us have effective treatment. I had managed to continue working in my demanding job; continued cycle-racing until some unrelated life-threatening injuries changed my life. But my rheumatologist now tells people that there is indeed life after diagnosis. It can be a trial getting through the early stages but these biological treatments seem to be remarkably effective. Good luck.

[hedgehog45]

You poor thing - I too was diagnosed earlier this year (but am twice your age) and am still coming to terms with what lies ahead of me. It's a most frustrating and sometimes depressing place to be so I totally sympathise. My doc put me on Prednisolone but I quickly came off it as I made my head feel 'fuzzy' and I couldn't function on it (I teach in a high school). The methotrexate helped me feel human again and that I could carry on with working which has been great but recently my hair has fallen out so I'm now back to the drawing board again. As someone else said to me, it's all about trial and error and about what works for you as we all react differently to the meds. Take it very easy and make sure your nearest & dearest and friends know how tired etc you feel and that it's part of the condition as that's something that can be quite debilitating and is not visible to others. I've had to change my socialising a bit so that I don't get too tired and now know my limitations which has meant making changes but it's doable! Good luck.

[Sandrajb]

Dear Smurf808,

Firstly welcome to this forum which is a wonderful of support and information and secondly do not despair!

RA is highly treatable and it is usually the first few months after diagnosis that are the most difficult, not least the tiredness you describe, before the meds kick in which can take a fair few months as I am sure you were told. It is a good idea to keep a little daily diary meanwhile monitoring how you feel on the medications and how you feel in yourself. This can be very helpful as time passes to share with the medics and to gives you an overall impression of how you are getting on.

P.S. Good book is Rheumatoid Arthritis: The First Year by M.E.A. McNeil.

Chin up

Sandra

[cathie]

Methotrexate is the gold standard treatment for RA and Pred will reduce your inflammation although I expect they wont keep you on it for long. You dont say how much they've prescribed you, but I'll share that it makes me pee a lot in the night too. Not good for healthy sleeping. I wonder how long they want you to be on it and whether they've advised you how to taper off, rather than stop it suddenly?

Interrupted nights can also be caused by stress and anxiety, which isnt surprising given your recent diagnosis. RA is a horrible disease, but there are things you can do to help. Regular (gentle if necessary) exercise is one important thing, I had to lose weight too to help my joints. There may be things you can do to adapt your living conditions - the thing that best improved my life was to get a walk in shower! These things dont have to be horrible looking things at all, it can be quite challenging and exciting to figure them out.

I hope the methotrexate helps soon

Cathie

[Keryn]

Yes this disease will change your life and tske over your life if you let it. The pred until you get used to it will interupt your sleep. The mxt takes awhile to get used to and it does knock you about. It will take agood few months to work out the right dose rates, what works for one person may not work for the other. As much as u feel like u have no energy try and do alittle excersise each day go for a light walk outside or something like that it usually helps me feel less down.

[Kim-NRAS NRAS]

Hi Smurf808

If you would like to speak to someone over the phone who knows what it is like to be diagnosed at 23 we have a couple of lovely Telephone Support Volunteers that we can arrange a call with for you?

If you call the NRAS Helpline on 0800 298 7650 or email [e-mail] and request a call we can get that set up for you.

Best wishes

Kim

[e123]

Hi I can definitely relate to you I was diagnosed early this year and am 22 I know how you feel and its taking me along time to come to terms with, ive also recently started taking methotrexate which did seem to start working but not so much now I think I need to increase the dose, from what ive heard it takes everyone a while to figure out what medication works best for them and its a bit of a trial and error period we are going through, all I can say is I have found going to a support group and this website reallly helpful and makes you feel like there's someone therewho understands when you are going through a tough time, im happy to talk if you want to send me a direct message,I also think its important to find a rheumatologist and GP who understands you and you have to be honest with your friends and family so they can support you too, but most importantly ive learnt to try and not be too hard on myself and except things as they are (im strugglin with this) but if this means you cut down on work hours abit then you should talk to your employer, you need to try and do things that will help you but not push yourself too far .hope this helps , El x

[medi52]

Hello. I was diagnosed at 24, earlier this year, and I know how you may be feeling. All I can say to you is try to stay positive and don't let yourself down. You will see that as soon as the meds kick in (or they find the righ dosage for you) you will feel great again! Find something to distract you with, someone to talk to if you need, a little excercise may help you feel active again and sleep better at nights.

I know it's a long term (life term) condition, but it will get better. I'm sorry if this sound too insensitive, but really it's the only part that is in our hands. The one thing you can do about it is don't let it torment you. We have a whole life ahead of us, and it can be pretty good life. Cheer up!