New RA diagnosis, feeling anxious!: Hello everyone I'm... - NRAS

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New RA diagnosis, feeling anxious!

threebirches profile image
21 Replies

Hello everyone

I'm new to this forum, I'm not even sure what I'm looking for really, reassurance that I will feel normal again? I was diagnosed with RA a few weeks ago and have started sulfasalazine and hydroxychloriquine and will probably need to add methotrexate too as my disease is very active. I also had a steroid injection last week while I wait for the drugs to kick in.

I seem to have lots of questions and I'm not sure the best place to get all the answers! I'm worried that my joints have already sustained damage as my diagnosis was delayed, I can't fully straighten either elbow, and that I won't ever get back to how I was before. My children are very young and I want to be able to run/lift/play with them.

How long does it take to feel you're getting on top of things? Any information is appreciated!

21 Replies
Mermaid11 profile image
Mermaid11

Hello, Sorry to hear you've been suffering. I hope now that you have a diagnosis, your medication starts to work for you to provide some relief.

I can't give loads of information, as I too joined this forum to hear what others experiences are. I also have 2 young children & was diagnosed 2 years ago. I've always found I can ask questions on here and everyone is so helpful.

Also the NRAS website is very useful and I found it reassuring reading people's story's on there of what life is like for others, ive also used the NRAS helpline and they was very supportive in my early diagnosis and coming to terms with all the information.

I can understand the pain you are in, and having children is physically demanding.

I would read other people's journeys and didn't believe I could find a medication that worked, I thought I was never going to feel any better... but I am now on a medication that is working, im off steroids and have just gone back to work. I am able to take the children to nursery, the park or for a short walk, for the first time in 8 months. The one piece of advice I'd have given myself 2 years ago, is to listen to my body and rest when I need to. I didnt do that, I pushed on at work thinking I could carry on as normal and I made myself ill, I ignored the diagnosis pretty much in the hope it would get better if I pushed through the pain.

Don't give up hope, and reach out if you need someone to talk to. It is alot to take in to start with, but your not alone ❤

Neonkittie17 profile image
Neonkittie17

Hi there, I think it’s such early days that you don’t know that damage is permanent. I think you should be hopeful the meds will control your stiffness and pain and allow you to do a lot of the things you’ve done before but you may need to make some adjustments. My elbows are still a bit bent and not entirely straight but you can’t notice it and it didn’t stop me completing my business degree and then doing a further BA in fine art and a Masters in printmaking .. two very physical degrees. I also worked part time for a voluntary group for disabled football supporters for 14 years till recently so RA hasn’t stopped me doing study and work. I can no longer play squash or run so a few frustrating limitations over 26 years of RA but a lot of the time I’ve just done most things I used to do. Walking and holidays and socialising. Keep a note of questions you want to ask the rheumy/nurse for next time you speak.

So I hope you find you can pace things and get rest between looking after your children. I hope you get some support at home to do your housework, etc. I think the fatigue is hard to cope with at first until the meds kick in. Once the RA is under control then you’re not so tired. I am sure people with families on here with small children or those who have had children and now grown up, etc can advise you more as I don’t have children.

You could ask your rheumy if you can check your joints such as your elbows re joint damage via xrays if that would help you. You can often feel like a joint is damaged and it’s not. The stiffness and restriction can come from the soft tissue and not always joints themselves. I know you’ll be busy but if you could get to see the rheumy physio it could help you with gentle exercises to keep moving more easily and advice on many aspects of movement and day to day activities. Good luck and hope your meds work soon for you and you start to feel much better. 🙏🏻💗

Dawn7 profile image
Dawn7

Hello, and welcome. You are in the best place for finding out information and getting reassurance. There are many lovely people on here who share experiences that really help us "cope" with our "new life".I was diagnosed 4 years ago, the first year is "coming to terms with" and working out what can and cant be done, you have youth on your side, and once the medication starts to settle in your system and your body reacts to it, you should feel the benefits. Not to say, there will be good and bad days (emotionally and physically) as you adapt, but there is every reason to look to a bright future being able to enjoy your young children and fulfil the role of mother that you want to.

It is worth speaking to your RA "team" for advice on any exercises to help strengthen/ loosen your elbows without further damaging them. I have found over time, (my hands are the most affected) that positive exercises can slow deterioration, and to some extent halt it if not reverse it. The main thing is strengthen and support so you can do the things you want to do.

Type any subject in the search bar of this site and you will find information that someone has written.

I hope your journey goes smoothly, that your medication helps you quickly and that you can enjoy and accomplish all the things you want to do with your children.

😊

sylvi profile image
sylvi

When you start a new regime of drugs they usually say about three months for the drugs to work. xxxx

Bookworm55 profile image
Bookworm55

Hi. As others have said, it is very difficult to know what damage may have been done long term at the beginning of your treatment. Maybe none! I was diagnosed over 5 years ago when my RA started very suddenly and painfully in the space of a few days. Such was my panic at diagnosis I was convinced we’d have to move to a bungalow immediately- but 5 years on still living in a house with stairs - and no need for adaptations yet! Of course everyone is different but there are many medications available and a good rheumatologist will make sure that they are working for you.

Sheila_G profile image
Sheila_G

Hi! Welcome to the forum. We can't give you all the answers on here but we can and do share our own experiences which is fantastic. We listen, share and help people to access and source relative information and expert advice. It is a scary time when you are first diagnosed but your rheumy team is there to help you and to make your life as comfortable as possible with your condition. Sadly, one size doesn't fit all so it is impossible to say how long it will take for you to be on the right meds and for the benefits to kick in. I hope you are on the right track soon and please continue to post. Sometimes just telling people how you feel is helpful. We have all been where you are now and we want to help you too. x

helixhelix profile image
helixhelix

When I was diagnosed I could hardly do anything for myself, cut up food, hold a tea cup, make a bed, etc. I was terrified that I would never recover as my hands and knees looked awful. But I did!!! Was amazed at how much better I got. However it took nearly a year to really get controlled, although started improving after 3 months.

Good luck, but chances are you’ll be fine.

threebirches profile image
threebirches

Good morning everyone, what a lot of nice replies to wake up to this morning! It definitely helps to hear stories from others and makes me feel more positive. I was told I had to wait until things were calmer to start physio as it was possible to cause damage while inflammation still so active.

I might give the helpline a try today, thanks again for taking the time to reply. I don't feel so anxious today.

Jackie1947 profile image
Jackie1947

Hi. Having RA is not to be feared but I guess you are still trying to get your head around it. There are some wonderful drugs available and starting early after diagnosis is the key. Don't be afraid to ask questions of your medical team and on this forum.Remember you deserve the best treatment available to you and with the right treatment you will strive ahead. Wishing you all the best.

Glad you've been put on medication and your team are looking after you.

Time really does help and not googling things really helps! NRAS are great as is this forum, there are alot of people here with experience and are really kind.

Take care x

EmmaSpicer-NRAS profile image
EmmaSpicer-NRAS

Hi Remembermylast, welcome to the forum. I would definitely recommend calling the NRAS helpline, our brilliant staff will be able to answer any questions you may have nras.org.uk/helpline/ our helpline is open 9.30am - 4.30pm every week day 0800 298 7650. Or you can contact us by email helpline@nras.org.uk. Emma :)

Katie-Mag profile image
Katie-Mag in reply to EmmaSpicer-NRAS

The NRAS pack of booklets for newly diagnosed people is also excellent!

stbernhard profile image
stbernhard

Hello, you have some very kind and helpful replies, which can expect on this forum. My advise is to get onto the NRAS and versusarthritis websites to learn as much as you can about Rheumatoid Arthritis, medication, fatigue, exercise and self management . There is a lot you can do to help yourself to get back to an active life. There are app to record your symptoms daily. It only takes a minute and it's very helpful for your rheumatology team if they can see how you are over a period of time. Saves you trying to remember and they don't just take the day you see them into account. I feel for you. Like all of us, the start is a struggle, but you have every chance to lead an active and good life with RA. All the best.

Boxerlady profile image
Boxerlady

I'm on "triple therapy" - Methotrexate, Hydroxychloroquine and Sulfasalazine and it's working well for me 😊 It does take time for any medication regime to work though so meantime take things as easy as you can although it can't be easy with a young family.

threebirches profile image
threebirches in reply to Boxerlady

Thank you, do you find you have side effects on the triple therapy? I've been on so far on the hydroxychloriquine and sulfasalazine but I've heard methotrexate is stronger?

Boxerlady profile image
Boxerlady in reply to threebirches

I started on Methotrexate and Hydroxychloroquine and added Sulfasalazine later.

I had some initial side effects with both Methotrexate and Sulfasalazine but they mostly settled after a few days /weeks. I still get the Methotrexate "hangover" the day after my injection but it's manageable and for me anyway, it's preferable to joint problems 😊

Everyone is different with medication - both results and side effects - so try to keep an open mind; people often report negative effects but don't bother to mention when something suits them so you can get a biased view.

My rheumy team have been very good at listening and working with me so I'm happy to try anything they suggest.

ketiv74 profile image
ketiv74 in reply to threebirches

Similar to Boxerlady, I started with Mtx in early 2019 , it worked like magic for almost 2 years then my Rheumy added HCQ early this year as RA pain started creeping back in. I did not experience any side effects with either. Now that HCQ is taking effect, things are getting back to normal. I have been able to do Yoga and walking couple of miles everyday. Feeling like a normal person again.

My Rheumy call Mtx + HCQ combo- Batman & Robin of the RA world..LOL!

Hope the SLZ +HCQ combination works well for you. Hang in there, Good Luck!

threebirches profile image
threebirches

Thanks again everyone, lots of helpful comments. It seems the first year I might have to be patient to find the right treatment. The steroid injection is providing a good bridging effect and pain is definitely less, does anyone know how long that is likely to last?I just changed my username as the original one wasn't quite right!

Deeb1764 profile image
Deeb1764 in reply to threebirches

Rest when you can, patience for drugs to work and keep a diary so you know what is a good day and what is a bad day if you get them and helps explain things when with a consultant too x

ketiv74 profile image
ketiv74

Hello & Welcome. I am glad that you have a diagnosis and have started treatment. You are on a path to recovery. I understand your concerns with joint damage. Before I was diagnosed I suffered with the joint pains for 6-8 months, mainly my left knee, which had to be drained and injected with steroid. Even though that took care of much of the pain, I was still not feeling it was 100% back to normal at that time. However, it did keep getting better & better as Mtx kicked in. I have never had that kind of RA pain in my knee since then and feel like it is back to 100% function now. It took almost 3-4 months for me see full effect of Mtx & get off the steroids. I would suggest to keep the joints moving but with caution. Gentle Yoga / Stretches helped me a lot to gain back range of motion for most of the joints including my knee & ankles, which were most troublesome in the early days.

Good Luck & Take care!

Hello,I‘m so sorry to hear about the situation you are in. I don‘t really have any answers but am in a similar position to you although yours sounds worse but I wanted to sympathise with managing the pain and having small children! You are definitely not alone on here and I hope the medication kicks in quickly for you.xx

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