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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.

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Do not forget this s a overwhelming situation for you. As long as you continue putting one foot in front of the other, you will manage just fine.

Methotrexate is a serious drug for a serious condition. It has helmed many people with RD but not everyone. This autoimmune disease affects everyone in unique ways. It willow can take time to find the right treatment for you. Just take things one ☝️ issue at a time. There is so much to take in at the beginning. Try to survive the holidays as best you can. Stress will worsen your conditions so be kind to yourself.

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Thank you, I am sure it will all sink in.

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I've been on Methotrexate for 7 years now, and it's my best friend. I am in remission (mostly, just occasional flares) thanks to the drugs, and basically live my life pretty normally. When first diagnosed I was terrified of the drugs, afraid for the future etc etc - probably all the things you are fretting about right now. But life is ok, and the chances are it will be ok for you too.

Drink lots of water, make sure you take your folic acid, and make sure that you keep the pills well locked away from your toddler. And as Damaged says, be kind to yourself.

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Thank you so much for this, it is always helpful to hear a good story. The pills will definitely be locked away, and I will be sure to follow your advice on water and folic acid. Really appreciate the reply!

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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! 😊

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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.

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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.

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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.

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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!

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Yes, I always follow directions. I have noticed most people who tend to wrote in forums are either new or not happy. Same thing as writing a review, you mostly only see negative comments. I am happy there are a few of you to help us newbies feel a bit better! Hopefully someday I can return the favor!

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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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Thanks for your response. My doctor said I was a candidate for plaquenil but he would rather I start with the methotrexate to be as aggressive as we can up front. So we will see how that goes. I am really hoping for good results. I really appreciate all of the advice! I am planning on taking Saturday with my dinner and then having Sunday to rest. The first week I start with 10mg, 2nd week I go to 12.5mg and then 3rd week I will be at the 15mg. So at least my body will hopefully adjust while we are going up each week. And for the time being, I am learning to just enjoy each day and be thankful that I can still dance with my son and chase after him! Best of luck, I hope you do find some relief with the methotrexate!

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🚦

🚦 You're in good hands 👐 , new mum 👼 , Jesscap. 😌 🙏

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🚦 Abundant realistic hope for improvement/ wellness:

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🚦 👩‍⚕️ Dr. Monica Aggarwal, a mum of 3, may have some practical day-to-day tips

🚦 for you: healthunlocked.com/nras/pos...

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🚦 🙎 Iida, a more recent mum of 1, may have additional insights for you:

🚦 healthunlocked.com/nras/pos...

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🚦 Keep taking good care of yourself, Jesscap. 🙏 🍀 🌺 🌞

🚦 You & your beloveds 👪 will fare well.

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🚦 Wishing you the very best Holiday 🎄 present 🔖 — "the gift 🎁 of good health 🤗 ."

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Thank you for the helpful links!

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