New normal? Advice on what the future holds

[Pembrokeshiregirl]

Hi all. I’m looking for some advice. I’ve been diagnosed with seronegative ra and started methotrexate two weeks ago. So far so good with no side effects. I know it takes a while for the meds to have an effect but my foot and ankle are very swollen and soar and walking is difficult. Can I expect the methotrexate to help with this or is it something I am going to have to learn to live with? The new normal?

[Hidden]

Hello and welcome I too am s- negative and I am on methotrexate (3years) worked up until this year. The aim is to have little or no flares ( these are swelling and pains in joints with me I also get extreme fatigue). You will learn what sets you off like over doing things(gardening etc). It should settle down as the medication works. It’s trial and error with meds. It looks like I will need to change mine as it is no longer effective.

This is a great group for information generally someone can help just ask.

It’s also a great place for a rant or moan 😁

[helixhelix]

When I was diagnosed I was completely wrecked - could hardly do anything. I was convinced that there was no way I would ever get back to normal. But I did! Well maybe 95%, but that’s ok with me.

Be patient, look after yourself and help your body as much as you can, and keep notes. The positive changes might be very subtle to start with, but it helps to have notes so you can tell your rheumy team. And if you don’t feel it is working after a while, then push to have medicines reviewed.

[Ali_H]

Sorry about the leech above peddling painkillers..... it’s not the norm for our forum but the odd ignoramus gets through!

As Helix says look after yourself as the first months can be hard emotionally as well as physically. If MTX is ‘the med’ for you there is still some 10-12 weeks before it gets fully up to speed. I’m on MTX only as it has been the med for me since diagnoses in 2014 - fingers crossed it works as well for you.

It might be worth using this time to sort things like asking to be referred to a podiatrist who will advise re feet and can refer to orthotics who can make up insoles to support feet.... my insoles are a godsend.

Let your dentist know that you now live with RA.

All the best

Ali

[Pembrokeshiregirl]

Thanks for the replies. Struggling at the moment. Partner planning holidays etc am I’m like “not sure I’m going to be able to do that” and carries on regardless. Hard to explain to your nearest and dearest what this condition is like to live with. Appreciate the support. Thanks

[Caza in reply to Pembrokeshiregirl]

Yes I think this is quite common for partners not to understand. Mine is only just beginning to get it after 7yrs & my grown up children & friends not at all. That’s why I love this forum peps totally get it. Hopefully with the right meds you’ll be able to do most of the things that you did before & if you need to rest then rest. Important to look after yourself. Good luck

[Gnarli in reply to Pembrokeshiregirl]

It takes quite a while for us to understand RD and the effects it brings let alone our nearest and dearest. I have relatives who still don't get what I'm dealing with or, on occasion, don't care. Give your partner some of the excellent leaflets from NRAS, show them this forum and keep talking

[AgedCrone in reply to Pembrokeshiregirl]

Get hold of some of the NRAS explanatory leaflets...they often explain what you are trying to get across to your partner.

[Oneta]

I was keen to get mobile again so I went to a physio and got some mild exercises to get me moving again. Start slowly, but find what makes you feel comfortable, wether it’s hot or cold packs, sleeping, stretching. I reckon there will alway be mild pain, but I was more concerned with maintaining my mobility. If drugs are what you need at the moment to manage the inflammation, so be it. Then slowly cut back if and when you feel better and introduce more movement - you body will guide you and good luck. I gather methotrexate is a long term thing.

[Mmrr]

I'm sero negative too, it's good to hear you have been started on medication quickly. As you say it can take a while for things to settle down with MTX taking up to 12 weeks to be fully effective. In the meantime it is important to stay mobile, but not to overdo things.

Follow what your body is telling you, with periods of rest throughout the day. Applying ice and heat packs over sore areas can make a difference too, so worth trying.

[Pulfs]

I was diagnosed 25yrs ago with sero positive RA and that was a shock to me as I was very active and independent, it hit me hard as couldn't even get up out a chair without my hubby and son helping me. Over the years with various ops and drugs ,one of them is methotrexate got my mobility back and learnt to pace myself and not get over tired. 7yrs ago was put on biological retuximab and this has made a good improvement but still have to rest up and not overdo things.

If you need to rest do it and not feel as if you to do things all at once you'll get to know when your body is telling you to rest. On the NRAS site there are some good booklets on coping with RA which I found helpful to show my family so the could understand what I was experiencing. Gentle hugs to you and take care. X

[bassiefromholland]

Hi, first all the best from Holland. IT will take time the mtx will do its work. Also it can be you need other drugs. Everyone reacts dfferent. The pain Will go away of become less. IT is normal that sometimes different joints Will be swollen and soar.

IT is a annoying disease with good and bad periodes of pain and fatigue

Keep strong Pembrokeshiregirl!

[rab1874]

I’m sero negative coming up 5 years now and when I started I couldn’t get out of bed , I’m on mtx 20mgs and Amgevita a biological drug which isn’t working at the moment so hoping to go onto something else , I’ve had a few biologics and been up and down but better than I was at the start, got quite bad fatigue as well at the moment but hey ho some people are worse off, hope your treatment works as we’re all in this together xxx

[turtlemom2]

Not the new normal. MTX can take up to three months according to my doctor. This is month three and pain is still there. Not as bad but still there. Still effects my every day life. I too have Sero Neg RA. The diagnosis is taking forever. Please watch for MTX side effects. I was fine at first then I started to get not well. I have a call in to my Rhemy. I have difficulty in swallowing sometimes like I forgotten how, muscle cramps on my calf muscles, shortness of breath and such severe body aches I think they are actually deep deep in my bones. I had none of this in the beginning. However I see some have had nothing but wonderful experiences on it. I hope you are one of those. How long did it take for your diagnosis?

[turtlemom2]

Also, I say not the new normal because I do not believe that is how we are suppose to live. I think that means the med is not working but again it takes 3 months for full effectiveness

don't give up!

[turtlemom2]

I am not sure ( I live in the US) why when you are diagnosed with RA you don't get automatic disability for the first 3 years lol. It takes about that to get settled and find some medication for your new condition! One thing I have come to notice is that even when you are in remission (I have yet to achieve this) your world will always be different after diagnosis. Always. Symptoms can happen at any time as there is no real cure. It really does change everything I can say I was not ready for that one.

[Suzy95]

Hope you feel better soon. RA is a horrible and very invisible illness. Only other sufferers can truly understand the impact on lives, jobs etc. The medication does need time to work but if you still feel awful before your next appointment, contact your rheumatology team. Look after yourself!

[Nanna71]

I've been on MTX 8 months now 9 (started at 10mgs, now at 25mgs) and I don't think it helped anything noticeably until I had 6 months under my belt. Personal thought, my immune system is pretty tough to beat down and that's why it took so long. Complicating everything is that my doctor uses prednisone as a bridging drug (excellent for the pain of inflammation,but gives you plenty of trouble tapering off it) and he added sulfasalazine to the mix so trying to separate what each thing is doing keeps me busy every day.

Side effects were minimal for me; a few mouth sores that went away and hair loss, which doesn't hurt and has slowed down some. Well..., there isn't much left to leave in the tub anyway. My genetics predispose me to hair loss.

Lots of information on this site from those more expert than I. I am sure you will do much better than what you are doing now. When I was diagnosed I couldn't have twisted open a water bottle. Today I can go outside and cut some firewood with my chainsaw or my bucksaw, pull weeds out of my tiny garden, lift pails of water (carefully) and carry them and so on. There is life for me, but a bit different and more planned.