New to RA starting methotrexate, so overwhelmed

Hi, I am 36 years old and was just diagnosed with RA this past Friday. My Rheumatoid Factor test came back high (204) and CRP was quite elevated. The anti-ccp test came back normal, and I have had no erosion. I started with some foot pain about a year ago, my son was about 8 weeks old, I thought nothing of it, other than my hormones going back to normal. In June, i started having chapped lips, that woulsbt heal, but i was also under some stress with switching jobs, so again didn't think anything of it. In September my right wrist started to hurt, and the knuckle on my right middle finger swelled up. That's when I went to the doctor, and they started testing me. I was referred to a rheumatologist, who sat me down and told me I have RA, which is heart breaking. I haven't felt sick, I never had any type of fever, the swelling in my joints pretty much happen a couple at a time, never on the both sides of my body, and my stiffness in the morning, when I have it, goes away fairly quickly. I have completely changed my diet since September, eating anti inflammatory diet, which I have noticed less swelling everywhere since then. I just don't understand. And now I am terrified to take methotrexate. They are starting me with 15mg, and I am waiting for the pharmacy to deliver them. I have a 14 month old, so a quiet day is impossible to get, I am really hoping for the best, it's just so much to take in. Sorry for the long post, I have been trying to be strong for my family, and I feel like I am failing.

14 Replies

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nomoreheels

9 months ago

Hiya Jesscap, welcome. I'm sorry to hear you've received the diagnosis especially as it was unexpected. Well, my first symptoms were in my feet, nowhere else but the more you'll read you'll realise there are no typical symptoms, one person's may mirror another's but another's may be different again.

I started on MTX 8 years ago after my fist DMARD hydroxychloroquine stopped working & like helix I also consider it my best friend, it's the one out of 4 I've been prescribed that's worked best for me. I also started on 15mg tablets although I've been on injections 7 years, I'm reasonably well controlled, I have been better I won't lie but I appreciate I could be a heck of a sight worse.

Maybe if you try to turn your thought process round that would help a bit? Instead of being terrified at the thought of MTX think of it as the start of treating you. Your diet helps inflammation, I eat a Mediterranean diet but I still have RD, your RF factor proves you have RD unfortunately & your Rheumy wouldn't have prescribed them unless he was sure of your diagnosis. I'm hopeful you'll respond as well as I did & yes, do drink plenty of water around MTX day particularly & your folic acid, they should help with any side effects.

I hope it helps being here, it is a difficult period of adjustment but we'll help all we can, you only need to ask! 😊

Jesscap

in reply to nomoreheels

Thank you so much. After having almost a week to let this all settle in, I am feeling much better. I am hopeful that the medicine works and that I don't have too many side effects. But I do l know that my doctor knows what is best (He has been in practice for 40 years!). My husband is very supportive and keeps telling me everything will be okay and that I need to remember to enjoy life and not feel hopeless. I have overcome many things in my life including being born 3 months early with a collapsed lung, so I think I can learn to manage this and enjoy my life. It was just a shock to my system. And it could have been much worse, it was found in the first year, I had no erosion, and overall I am healthy. So now I just have to lose some weight to get to my healthy weight and stay active. I really appreciate you taking the time to write to me and tell me a little of your story.

in reply to Jesscap

I'm so pleased your husband is supportive, he seems to have a positive attitude toward your diagnosis, that really helps I can vouch for that! When first diagnosed it can be a shock but the more you realise it's as it is you accept it & then start as you're doing now & turn your fears into thinking how you can change things, & that's by starting meds. Good to hear you're tweaking your diet, some find certain food groups can cause an inflammatory response. Sounds to me like you're now thinking more positively, that goes a long way to doing well, no point worrying about side effects that may not happen! If you feel you've some weight you could lose that would be good, anything that causes less strain on joints helps.

We have something in common, a collapsed lung, althoug mine happened a fortnight before my wedding. It's made no difference whatever to my treatment though if it's still a weak spot for you, if colds end up on your chest, laboured breathing, do mention it as part of your medically history to your Rheumy, just in case he thinks it necessary to note in his records.

It's true the earlier you're diagnosed the better the prognosis generally, I was diagnosed early, I'd only had my symptoms a month, a total of 6 weeks at diagnosis but I did have erosions in my feet. No joint replacements thankfully so I hope you'll follow a similar pattern.

I don't know if your Rheumy's recommended how to take your MTX but mine said to take them with meals, so my 15mg I took as 2 with breakfast, 2 with lunch & 2 with my evening meal. I had no nausea, well a teeny bit but only in the first few weeks & think that was my body reacting to a new med & it wasn't so bad that it stopped me eating! Also taking the tablets this way you take in more of the dose & I understand the more common side effects are as less troublesome too, more than taking them in one go anyhow.

I am glad to hear you haven't had any joint replacement. My doctor told me to take all the pills at once at the same time every week. He said to take them with dinner and then I will hopefully sleep through any nausea. I am in the US so he also told me to take My folic acid everyday including the day I take the meds, he said that will also reduce the size effects. I know there are different theories on when these things should be taken. It's quite interesting actually.

I do need to continue to lose weight, nothing too tremendous, but enough that some of the pressure is taken off.

I am sorry to hear of your collapsed lung! Luckily for me, mine had happened when I was born and has had no effect on me as an adult. My doctor did do an xray of my lungs and all looked completely normal, so one less thing to worry too much about.

I really appreciate you sharing your story with me, I am finding it helpful to hear some of the stories as it helps know you can live a completely normal life.

Best to do as your Rheumy suggests, you can always play with the timing once you know if you going to react to them. The taking of folic acid does vary, there are no recommendations it being off license used with MTX, you've probably read we here in the UK are usually asked not to take it the same day, I take my 5mg 6 days just not injection day.

Good to hear your chest X-ray was ok, your Rheumy wouldn't have started you on MTX if he wasn't happy with it. Pleased it's never been an issue for you. Yes, it was a shock for me, I first had pain in the October, travelling back from a friend's wedding so I can pinpoint it exactly. I didn't see my GP about it til the April, he sent me straight to hospital.

Happy to help, it is helpful to know things aren't always as black as they're painted, for the majority anyway. Do bear in mind though that forums are most often used by the newly diagnosed like you & those in difficulty so you will see some negative responses. There are some of us though who are generally well but who choose to be here, unlike most who are getting on with their lives!

Jules13

Your post sounds identical to mine except for the small baby you have.

It is trial and error I’m afraid. It is also terrifying. You have to trust your rheumatologist. I was so scared to take methotrexate that she tried me on sulphasalazine first. 3 months later and my RA was as bad as before. So 3 weeks ago I started methotrexate. I was so scared because you do hear horror stories but actually if you really read all the posts about methotrexate, most people tolerate it well.

I take mine at 6pm on a Sunday. I know that the first 12 hours I will sleep mostly and then on the Monday I am prepared to have a quiet day. I get a bit queasy and a bit short of breath and feel tired but by Tuesday I feel fine. Drink lots of water on the day of methotrexate and the day after. Don’t plan to do too much. You will be fine. The sooner you start the sooner you will feel better. X

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