Diagnosed with R.A one month ago and i am only 26... Pleas help me to understand it better.

[Browneyes26]

A month ago i was diagnosed with R.A... And at my age... I just turned 26 my body is aching an always in pain.... I went to a rheumatologist who told me to start taking folic acid Methotrexate and prednisone which i was scared to take after reading the side effects but i started today as im struggling with my body its like failing me an i gave into the meds thinking it this is the only thing that will help me. Its a low dosage an will change after a month . Who else has been there at my age an has started these meds? ... What side effects have you had? an what are you doing day to day to feel better with this.how did the meds make you feel? How quick did it take to feel better? What it a good idea that i started this meds early at my age? in the long run how badly will it affect me and my body... As i am so young an so worried an confused.please help me.

[mccaffs2014]

Please try not to worry. I think this is the standard treatment when we are first diagnosed. Try not to worry about all you read as a lot of people do really well on this treatment and if it does not agree with you your rheumatologist will find a treatment that does. I was 55 when diagnosed but my nephew was only 12. He is now 45 and has lived a normal life with very little joint damage because he was treated early. If there is anything you need to know then this is the right site to be on as the people who post here are very knowledgeable. There will always be someone to answer your questions. Try not to worry and good luck.

[Hidden]

Hi Browneyes, I’m sorry you have been diagnosed with RA but you have come to the right place for support and advice. We have all been where you are and can sympathise. I was around your age when I was diagnosed but there were not the drugs around then that there are now so I was on different drugs to start with. I do now take methotrexate and have recently come off of prednisolone. There are many people here on those meds so please try not to worry about possible side effects too much as meds can affect each of us differently. If you read about any drug they all have lists of possible side effects but they won’t necessarily happen to you, but they have to list them.

Sadly there is no quick fix for RA but it’s good you are now taking your meds so you start to get some relief. The NRAS website has some good publications and information that might be helpful to you and they have a helpline too if you want someone to talk to about your diagnosis.

Do keep talking to us here whenever you want and ask questions too. There is a search bar at the top so you can search for newly diagnosed posts for posts from people in the same situation as you. You are not alone and we will be here for you x

[sylvi]

Sorry you have this insidious disease so early darling. They have started you on a course of treatment that will help you in the long term,but in the short term it will take up to three months for the MTX to really get into your system and start working.xxxx

[helenv81]

Hi Browneyes sorry to hear you have joined the RA club. I was diagnosed 5 years ago in my early thirties just as I was getting married. My rheumatologist started me on Sulfasalazine as that is suitable for taking during pregnancy. Luckily my RA is mild compared to lots of people and the sulfasalazine has worked for me. The meds will take about 3 months to work and it may take your body a while to get used to them but it is important to take the meds to stop the damage RA causes. Also make sure you have the regular blood tests and check ups too. Hopefully you have a good rheumatology team you can discuss your treatment with. In the meantime while the drugs are starting to work be kind to yourself and don’t push yourself to do to much. X

[helixhelix]

I'm sorry you've been diagnosed so young. There are a lot of others on here around your age, so hopefully they'll pop up and share their experience.

However these days this is usually a manageable disease, and once settled on treatment you should be able to live normally. However there is a lot of scary rubbish on the internet, so please don't google frantically but stick to reputable sites like nras.org.uk/about-ra.

It will take time to get your head round this, it's a big thing, so be kind to yourself and try to look after yourself with as much rest as you can until the meds kick in. The prednisone might make you feel like superwoman, but if your joints are inflammed then still take it carefully.

[ruth_p]

Sorry you’re going through this, I was 14 when I developed JIA, I’m now 37. Steroids will help in the short term and keep you going until the methotrexate starts to work. Early treatment is key to reducing the effects of the disease. In the meantime listen to your body, if you need to sleep then sleep. Try not to do too much but make sure you move around regularly otherwise you will stiffen and the pain will be more. I know that sounds like a contradiction. Warm baths or showers can help ease painful joints or heat packs. Good luck x

[heyitsmee]

Hey browneyes, I hope you've had a good start to your morning. I'm 24 and was diagnosed with RA a year and a half ago. It took a while for me to be seen by a rheumatologist so my GP contacted them for advice and initially put me on 25mg prednisolone a day. I was nervous about this too, but desperate to be in less pain. The steroids had a great effect on me and helped me go from being housebound to being able to continue to attend my lectures at uni. However, I was still in quite a lot pain day-to-day. I started on methotrexate and hydroxychloroquine when I finally got to have a rheum appt. These didn't work for me very well, and again, so much pain! I had some steroid injections in my ankle and bum durng this time and they really helped to tide the worst bits over and keep me mobile. I also found that my brain started to filter out a lot of the low-level aches and pains and mainly fixate on the horrible joints that I was putting weight on or using at the time.

Adjustments were key - changes to how to cook, how much to carry in my backpack, how to shop for small amounts, how to walk slowly and plan my day with more leeway, how to be more flakey(?) with social plans. These things helped me to keep going. Saw rheum months later and told them I hadn't had much progress - the steroids were the only thing truly making a difference and I didn't want to be on them forever - I wanted a magic wonder drug that would help modify the disease (DMARDs or biological) not just some steroids to mask it. I had to add sulfasalazine to the mix and trial it - I failed - massive headaches. After failing 3 DMARDs after a 9 month period, and still being in a lot of pain and visible swelling (my onset was v. aggressive and I was seropositive), I was moved to benepali, which is a weekly injection I self-administer.

Saw the difference in 24 hrs, my hands could move! My fingers actually had full mobility! Now, after 9 months of being on benepali my quality of life has improved a lot. I can do most things I want to do and am working on going to the gym to get fitter/more active/healthy. I have to modify exercises because of problems still present in my elbow and wrists but that's more manageable than being homebound as I was. Recently, I have had 3 steroids injections in those niggling joints still exhibiting swelling (wrist and both joints) and these helped tremendously in feeling almost normal now. So, I'm almost 2 years in and I feel I'm maybe 70% improved. Adapted myself to a new normal, which I still need to get used to accepting. But much better. Conversations with rheumatology are more forward looking now (I am switching to methotrexate injections to see if that helps me get the final 30%) and I am able to discuss more long term concerns such as side-effects i have experienced, long term side effects, effects on joints. Also decided to completely come off of prednisolone (on 1mg a day now) which will be a battle I can see lasting for the better part of things year.

Things slowly , slowly, slowly, improve and the idea is that you will eventually find a regime which works for you and hopefully brings you to 100% remission. As ever, the meds that have worked for me won't work for everyone - RA shows many different colours to different people. You may find oral methotrexate or hydroxychloroquine for a couple of months gets you feeling 100%! Or your path may be a bit more winding like mine and that is okay. You do have to go through a process of acceptance (particularly at our age, when our condition isn't well understood by friends and family) and that is honestly the hardest bit. You realise you are tougher than you know. You become more compassionate to people with mobility issues and others that are often invisibilised in society - the elderly, those in pain. These are good things, I think RA has made me a nicer person to be quite honest. It's TOUGH but having it in your 20s teaches you a lot! Also shows you the care of your friends and family when you're particularly low and need a bread/jam delivery. I've been brought to tears quite a lot by simple acts like this. People care and you will be supported through this! If not by friends and family, by your medical team and by us on this site! Posting on NRAS has helped me understand my condition and common side effects of meds. If you have a particular concern, search the site for a keyword and I'm sure you'll find great info in a previous thread. Also don't be afraid to post! Good luck, and have a nice bank holiday weekend x

[Sarah_89]

Hi Browneyes, sorry to hear that you have developed RA at such a young age.

I just want to say that although it seems bad now it will get better! The medication can be scary at first but in the long term it is absolutely worth it, as without it the uncontrolled disease could be disabling.

I developed RA at 15, and I'm 29 now. Like you I started on methotrexate, which worked brilliantly for about 5 years Unfortunately I experienced quite bad nausea and had to eventually switch to something else, but there was no long term side effects from taking the methotrexate :). Hopefully you will be lucky in this also.

In the long term - I think a lot of people have periods of remission and periods of flare up. Hopefully you will find that the meds fully control the disease, I think this is true for a lot of people a lot of the time And if not, then it helps to speak with your Dr as soon as possible, and usually a solution can eventually be found.

I'm sure you'll find this forum very helpful! I've only very recently discovered it and there are so many helpful and friendly people here, I wish I'd discovered it earlier on. Although at times it all seems so unfair, and the disease can definitely get you down, but it sure is a comfort to speak with people who are going through the same things

[HevP1]

It's life changing and you will need a change of mind set trust your doctor at hospital they run a pain management course go do that it's run by rh or go to your GP he can get you on the course don't worry it will not help except it don't fight it but believe life can still be good

[Angels54]

So sorry to hear you have got this at a young age. The pain can be bad which means you will need to take medication. try and keep your immune system built up by eating healthy things. get as much support as you can from rhuemy nurse. I’m in my 60s and had it 4 yrs, I can only say and hope that there will be more new drugs that will help this horrible disease, try not to let it get you down, you will have good and bad days, possible flare ups that will just start with aching or stiffness. it also depends where it is as mine affects my hands and feet, good luck

Sandie

[Amy_Lee]

Dear Browneyes26,

I am very sorry that at your very young age to be diagnosed RA. This is no doubt a very painful disease and if it is not treated early, our joints will be damaged in no time.

I can only base on my own experience to share with you as we responded differently with DMARDs. I had posted some very informative videos and I appreciated them very much when I was newly diagnosed of RA. In addition, to encourage RA patients to fight the disease positively, I also posted some of my recovery processes. I also posted what I did to come to this stage. You can go to my homepage to check that out.

One thing I would like to share is I took mtx and Prednisolone to start my treatment. Since my pain level did not reduce as fast, then on the 3rd visit, she added Arava (Leflunomide) to my treatment. My pain level started to reduce after about 6 months of treatment. I started to request my rheumy to give me more mtx to speed up the recovery after that. However, my rheumy said that I needed to add it slowly so that my body could accept it slowly.

I did have a lot of side effects from mtx and arava. But my rheumy said that the benefits that I got would be very much higher than those side effects. Most of the side effects were subsided after more than a year except vomiting. When the mtx dosage went up, I started to vomit when I saw it before I started to take it. This side effect was subsided after I was under remission and mtx dosage reduced to 7.5 mg. Now I am okay to see mtx without any issue.

Amy

[Browneyes26]

Thank you everyone for the advice. All of you has been so helpful. I appreciate it.