Newly Diagnosed with RA

[ladyelizajane]

Hi I am new here I was diagnosed last September and started treatment in November. I have been taken 15mg of Methotrexate that was increased to 20mg (injection) last week and 5mg of folic acid every day except the day of the Methotrexate. I have to add hydroxychloroquine now 200mg twice a day. Is anyone on that dose of medicine and has it helped. I have had 3 steroid injections so far that have helped.

[allanah]

Hi and welcome here. Sounds like your Rheumy has got you on gold star treatment. I'm on plaquenil platinum and been fine on it. I was told it would make me queasy but that passed after a couple of days.

With all treatments though if you have any problems contact your Rheumy Helpline or Nras Helpline or GP.

Have you looked at the NRAS website. There's loads of info on various drugs and treatments.

Lovely to see you here xx

[ladyelizajane in reply to allanah]

Hi Allanah thank you for your reply I really appreciate it. I will look on the NRAS website for any info on the drugs. It is a very anxious time being diagnosed and started on all these drugs, but always good to hear from someone like you that is fine on it. thanks x

[allanah in reply to ladyelizajane]

Absolutely. We are so lucky we have these drugs to help us these days and prevent the inflammation causing us problems. It's a great crowd on here and they and NRAS got me through the last few years. Keep asking questions is my advice xxx hugs but soft ones!!A

[nomoreheels]

Hiya, welcome to the NRAS site. Sorry to hear you've been diagnosed but pleased you've found us. Support is important in the early weeks & months, even years because this disease can be very lonely if you've nobody else to talk about it with, nobody who knows just how it is. We do!

I started my RD journey with the same meds, just the opposite way round, HCQ was my first DMARD & when that stopped working MTX was added (abbreviations, sorry, check out under Pinned Posts - Common abbreviations). I was on 400mg daily which I took as 200mg morning & evening for around a year. I'm still on MTX, 8 years now & like you injections but 17.5mg, any higher & my liver objects, also 5mg folic acid 6 days. I do pretty well generally, I have the odd blip now & then but that's not unusual. I also have OA, diagnosed at the same time as seropositive RD 9 years ago.

I hope you find it helpful being here. We're here if you need us, any questions will be answered as we've all been there & have plenty of experience of all sorts, lots we can share. 😊

[ladyelizajane in reply to nomoreheels]

Hi and thanks for your reply, nomoreheels (love your name) My MTX has just been increased to 20mg so I do not know as yet if my liver will object to it, it is a anxious time being introduced to different medicines- hopefully, they work. Thanks again really glad I have found you all

[Eiram50]

Hi

I’d echo all that’s been said and add a very warm welcome.

Marie

[ladyelizajane in reply to Eiram50]

Hi Eiram50 thank you- I am very glad I have found this site.

[Hidden]

Plaquinil kept me stable for about 18 months. It took another six months for things to get bad enough again before I went on Methotrexate. I have high hopes for the two together, I just took my third dose of MTX, with nothing exceptional to show for it yet. I started on 400 mg of Plaquinil and I am taking 10 mg of MTX once a week. It takes a while for these meds to build up enough in your system to work.

[ladyelizajane in reply to Hidden]

Hi flyred77 thanks for your reply- I am hoping they work for me I am starting the Plaquinill 400 mg tomorrow I am on 20mg of MTX injection as well fingers crossed.

[allanah in reply to ladyelizajane]

Don't forget the help.from NRAS website and helpline too !goid luck ladies x

[Ruth12345]

Same....welcome. Really cant say how helpful ive found being on this forum since I joined a few months ago. Everyone helpful and supportive and even makes you smile sometimes , which is great. Hope you get to remission quickly.

[ladyelizajane in reply to Ruth12345]

Hi Ruth 12345 thanks. I am really pleased I have found this site. It is a big diagnoses to come to terms with great we are all here to support one another. thanks

[Cherub198889]

First of all, I am sending you a big bear hug. I'm so sorry you had to join this group, but I'm glad your doctors have set you on the right meds.

Your meds & does are very common. Please don't fear your meds. Take the advice of your doctors and follow them blindly until you are emotionallyj/strong enough to question them.

I wish you the best

Sue

[ladyelizajane in reply to Cherub198889]

Hi Cherub 198889 thank you for your big bear hug- I really appreciate it. I was simply terrified when I realised I would have to inject myself with MTX and felt like I was on death row lol. Now I have found you all in here it has lightened my load and I know I am not alone. Start on my hrydroxychlorine tomorrow as well as a pip assessment. Will have to hobble along there to be judged as well.

[Cherub198889 in reply to ladyelizajane]

Yes, this group was my life line when I first got my diagnosis. Now that you have joined us, you will never have to walk the RA path alone.

There is always someone to chat with. When it's late at night and everyone in your house is sleeping, it's morning on the otherside of the world. So someone is always there to chat with.

Take care

Sue

[123baines]

I was diagnosed October and I'm on the same meds as you but I take 10 mg of prednisone steroid daily the pain better .I feel it's easing

[ladyelizajane in reply to 123baines]

Hi 123baines thanks - that is good your pain is easing hope it keeps that way. My consultant said she is going to be introducing another medicine to me next month no idea what she called it ... head fog as well as everything else lol x

[allanah in reply to ladyelizajane]

😂😂😂😂the old brain fog already !

[123baines in reply to ladyelizajane]

I know I have my husband come with me so he can tell me later. Have you been sent to occupation health and physio ? I shuffle instead of walking

[Lainey61163 in reply to ladyelizajane]

Hi there I’m on same meds but my head fog is so bad I can’t stand ITV.. I pray it goes away

[Valdun]

It was and is all scared! Compared to my treatment, it seems that this is comparable to the path of my treatment! I have learned to deal with much stronger treatment! I would like for you to consider a consultion with a psychiatrist! This disease and the medications are life changing and hard to accept for all of us! I consulted a Psychiatrist because of the medications I’d was prescribed! I am really glad that I did! I am sure that you are stable, but I was afraid of the addiction that could happen for pain medication as well as the side effects of the other drugs! I learned that my Physciatrist was very helpful in making sure that the medications were in sync, I did not know that a psychiatrist was a very knowledgeable about the drug interactions! I had some thyroid issues plus the good old change of life issues! He has consulted with my Rheumatologist, my primary and pain management physician! He also helped my family learn about RA. I am 17 years into treatment, and I feel very grateful that I am not a drug addict, that my family and friends understand that if I say I can’t that means that I can’t today but tomorrow maybe I can! The more you understand about RA, the better I can control how I and the people who love me react to it! This will also be a second opinion for all medications and treatment plan! Good Luck!

[ladyelizajane in reply to Valdun]

Hi Valdum thanks for your reply- that is all very interesting, I was certainly terrified at injecting myself with MTX and I am being introduced to other medicines as well. It is very reassuring to find others like yourself that can support and have advice for us beginners with this disease . thank you

[Tintoy43_]

Welcome

I am too new to help you as I was diagnosed at the same time as you but I pray for all of us. The MTX didn't work for me. Now I am on leflunomide and we will see if it works. I wish the best for you and everyone else with this disease. Just ask questions here on this site and these angels will respond to you. To All you guys and gals reading this ---thank you

You have given me advice, knowledge, and inspiration!

Thank you from my heart

[ladyelizajane in reply to Tintoy43_]

Hi Tintoy 43 thanks for your reply. I am not sure if the MTX is working or not, it is all trial and error. thanks again and I hope the leflunomide will work for you x

[Kai--]

.

Bit of supplemental info, ladyelizajane. You might find this med 💊 💉 infographic ( healthunlocked.com/cure-art... ) a nice snapshot 📸 summary of DMARDs to include Methotrexate & Hydroxychloroquine. 🤔

Very best wishes to you, ladyelizajane. 🙏 🍀 🌺 🌞

.

[Mandy8175]

Hello!

My name is Mandy, I'm 42 and live in the U.S. I take sulfasalazine, methotrexate, and I just started Humira today! I have been on Sulfasalazine for a year, methotrexate for about 4 months, and the Humira about 20 minutes! My esr is 89 right now and has been between 69 and 96 for the past 2 years. I am praying for remission! I have aggressive sero-positive RA.

[ladyelizajane in reply to Mandy8175]

Hello Mandy, hope your prayers are answered and you go into remission soon. xxx

[nomoreheels]

Hiya Mario. Nothing was mentioned by your Rheumy at your last appointment about referring you to a Respiratory Consultant I take it? Have you been having any breathing difficulties? The thing is with MTX there is a possibility of it affecting the lungs, a condition called pneumonitis is thought to occur in 1% (according to NRAS) so it's not common but is serious enough to warrant investigation if your Rheumy suspects something isn't quite right. It may not be that but anything to do with the lungs obviously shouldn't be ignored & why your Rheumy's referred you. Please don't worry, your Rheumy may just be ensuring all is well to continue on it. This is one reason we have a chest X-ray before starting MTX, to ensure our lungs are in good enough condition to start it. I take it you were sent for one?

The pain & soreness, that could be you noticing things more once you relax at night. During the day we tend to be occupied & may not notice certain aches & pains but when we stop or sit down they're more obvious, does that make sense? Otherwise, you have Osteoarthritis as well I believe. I do too & the evenings is when my OA lets me know it's there so I try not to sit too long so I get up & walk around for a bit every hour or so. Is your OA well medicated? My Rheumy handed the care of my OA to my GP who over a few months prescribed a few meds for my OA. They each serve their purpose but the buprenorphine transdermal patch (Butec or Butrans) is the main pain reliever. I also take an NSAID (etoricoxib or Acroxia), also amitriptyline & pregabalin. Each of these have made such a difference, particularly with sleeping. I used to have real problems with my back, still do to some degree but I no longer seize up. Excercise is also good for OA, ask if you can some specifically for your needs.

Don't know if you relate to any of this?

[nomoreheels]

So I understand. You were asking about your Rheumy's further referral & also your pain, if that was normal. I hope my reply helped.

[Magymay]

Hi lade Liza Jane I'm on same meds just increased to 20mg metoject and folic acid 6days also .Had injection in my knee last Monday but although it's not as painful still can't kneel on it without a sharp burning sensation .horrible .!Think an MRI scan is on cards next Monday .I've developed costochondritis which apparently is common for us .Inflammation of rib and breastbone .I'm in agony right now with it and my right hand has no grasp for pain .I also find the fatigue so much of a hindrance .I'm in two minds whether this med is helping .How do you feel about it ?

[ladyelizajane in reply to Magymay]

Hi Magymay-Really sorry to hear you are having a awful time. I have just started the hydroxy and feel a little nauseated and lost my appetite - my hair is starting to suffer but other than that I only have some pain in my hip at the moment hoping the side effects will settle down. I was only diagnosed in November since starting on these drugs I do think they are working I am not in the pain I was in, but as this is all new to me I don't know if the flare I had has settled down. I had cortisone injections that have help. I have to say it looks as if they are working for me. I hope you start to feel better soon. If you feel they are not working for you, speak to your rheumatology nurse. xxx

[Magymay in reply to ladyelizajane]

I know my hair is life less a bit like me after MTX8😄I hear lots of people talking about brain fog is this fatigue or something I'm not experiencing,*do you know?