Hello: Hi, my name is Baz and I have joined the forum... - NRAS

NRAS

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BJC1980 profile image
36 Replies

Hi, my name is Baz and I have joined the forum after reading some very encouraging posts when I have sought help. Thought I'd stop being a lurker and actually get involved, because nobody knows how we feel better than our fellow sufferers and this seems like a great community.

So, a long story cut short: I have been diagnosed with progressive RA since early 2018 at the age of 38 - progressive should be changed to aggressive, as the disease has shown little mercy and so far all meds have proven ineffective.

RA forced me to close my business 6 months ago when I was off more days than not and seemed to be in a constant state of flare up and letting my staff down. It felt like RA had pulled the rug from under my feet and I went from all to nothing in a few months. It strained my relationship, caused mental health struggles and pretty much left me bedridden most days with chronic pain and fatigue. Depression set in early this year, I felt alone and isolated, like nobody understood and all the medication seemed like a waste of time. RA was winning the battle.

Then I stumbled across this forum and realised there is still a lot of positivity out there amongst people with the same disease. It's promising to hear other people's stories and I realise I shouldn't be thinking of throwing the towel in yet and need to keep fighting, which is why I am here typing this.

I guess that's it in a nutshell. Look forward to contributing as and when I can.

36 Replies
Gnarli profile image
Gnarli

Hello and welcome, Baz, it's good to meet you at long last. I wish you hadn't had to join but you are definitely not alone

woodstar1 profile image
woodstar1

Hi mate and welcome!! This community has been great and really supportive in my very down times. Hopefully you will get the same, keep fighting mucker, things can get better 👍👍🤞🤞

allanah profile image
allanah

Hello Baz. Your story sounds like mine , no more lurking now lol..we know you now 😀

helixhelix profile image
helixhelix in reply to allanah

And how many years did it take you to find the magic drug for you? I remember it was around 4 years? So never say never Baz....

allanah profile image
allanah in reply to helixhelix

It took a long time ..... I've had it 11 years now , but got there ...in the end!

Pippy25 profile image
Pippy25

Welcome Baz and thanks for sharing your experience of RA or RD as some call it. Sounds like RD has been giving you a run for it's money as it likes nothing more than to try and test us, especially when it's 'friends' stress, pain and depression jump on board. Anyway glad you have posted, weather people simply read, lurk, dip in and out, post once in a while or actively post it is whatever you feel is right for you at the time. Glad you have joined us.

springcross profile image
springcross

Hi Baz and welcome. It's a shame you've had to join us but you've come to the right place. I'm sorry to hear you've had such a tough time and also that you've had to close your business down - that must have been really upsetting for you. Hopefully, with some good advice here you'll be able to get on the right track. All the best. xx

Hey Baz

Really nice to meet you and sorry to read of your journey so far with RA.

Pull up a chair, get comfy and just let it all out (not literally 😅) thats what I say. A problem shared is a problem halved and with the quality of people on this forum there's always someone who can help you.

Keep swimming nemo x

nomoreheels profile image
nomoreheels

Hiya Baz, welcome. You sound as though RD's given you a good kicking, I’m sorry. Sometimes it can take a while to find the right mix of meds, I hope you’re on the way now. Just wish you'd found us that much earlier when you needed others who know just how it can be, the ones who live with it. We may not have stopped the black dog but we may have been able to support you, but not to worry, we can now you've introduced yourself. Just ask & we'll try to help wherever we can. We can't take the place of your medical team, nor should we, but it is good to share experiences. We do have some male members, I’m sure if they see your post they'll be along to introduce themselves, they're always glad of the company! 😊

Hi Baz so glad you joined us it’s terrible struggling on your own . Our families try to understand and want to help but sometimes we don’t want to burden them . Often just letting it out helps . As you may have noticed it’s not all about the down side but the positives too . We love a laugh and few off topics too.

Now don’t be shy 🙈

patsymay13 profile image
patsymay13

Hi Baz sorry you are struggling so much at the minute , you have certainly come to the right place for support and comfort , everyone here are great and lots of knowledgeable heads around , don’t ever feel your on your own , we all understand , take care xx

Boxerlady profile image
Boxerlady

Hi Baz and welcome!Sorry to hear that you've been having such a hard time; hopefully you'll find "your" meds soon and things will start to improve. It's great that you've been encouraged by the posts here and hopefully sharing your experiences will help you as well as others.

Lolabridge profile image
Lolabridge

Hello Baz and welcome. You've had a tough time but I sincerely hope you will find the right drug that really works well for you soon. Meanwhile, we're here to support you through your RA journey and we do understand that there may still be some tough times ahead but share your lows and highs with us and try to stay positive. Courage, mon brave!

Biofreak profile image
Biofreak

Welcome Baz. It's probably not a group you would have chosen to join but you're here now and I hope you will find and share a lot of useful information. There are achy shoulders to cry on and a wealth of experiences to share. I have discovered a lot about the condition on NRAS Healthunlocked and am really glad I joined. As Marionfromhappydays said a problem shared is a problem halved (hopefully).

Mmrr profile image
Mmrr

Welcome Baz, I think you will find good support on the forum 😎

Ruth12345 profile image
Ruth12345

Hi Baz. It's all been said but just wanted to add another welcome to you. The best thing I did since diagnosis is join this site.Just keep on keeping on and you will get there, where ever there is, it's a different place for each of us. Welcome

ColinRR profile image
ColinRR

Hi Baz, welcome to the forum. We all understand how you feel when it hits you out of the blue, especially when you have been in good health previously. The main thing is to keep pushing your rheumatology team if the drugs they’re giving you are not working, which yours obviously are not. There are plenty of alternatives and there will be one for you. Meanwhile try to keep moving with gentle exercise. Hope you start to improve soon soon. Colin

essexgirl profile image
essexgirl

👍welcome

Niao profile image
Niao

Hi and welcome!

I am so glad you decided to make the move from lurker to participent!

I have done my fair share of lurking on health forums and have gained valuable advice that way, but, being very new to this group I'm already sure that you are going to get the so much well needed and deserved, support you need.

Constant pain, fatigue and debility and the turmoil it can cause on relations etc can take you to some very dark places at times and you mustn’t be or feel alone!!

Gladders profile image
Gladders

Welcome Baz, I hope this group helps you as much as it does so many of us on here. The topics on here are from real people going through very similar experiences.

janmary profile image
janmary

Another welcome from me. This has been a bad year to start your Rheum journey with all the chaos of COVID as well, but you will find the right treatment even if it takes a while.

stbernhard profile image
stbernhard

Hello Bax, you are certainly not alone. The first 18 months were hell for me and then things gradually got better. NRAS have a peer to peer help line where you can talk with someone living with RA specially trained to help you. They also have a lot of information about all aspects o living with RA. When you can muster the energy, it's well worth the effort. All the best friend.

Sheila_G profile image
Sheila_G

Hi Baz. Good to meet you. I am glad you have joined the group, you have found many new friends who know what you are going through. I know exactly what you are going through. I have had RA for 22 years and went through horrendous pain and very difficult times for several years. I was 51 when diagnosed, so much older than you but I have tried different combinations of drugs but never biologics. Everyone is different and everyone reacts differently to the drugs they take. Please don't despair. I was where you are now but for the last 5 years I have been in remission, which means a very low das score. I take methotrexate only and of course will always have to take the drugs but I live a very 'normal' life doing very 'normal' things. Of course I have flare ups but mainly shortlived. I don't know how RA or the drugs will pan out for you but please take some positivity from my story. I hope and pray that you will be like me one day.

Caza profile image
Caza

Welcome but sorry you’ve had to join. I think this RD condition really does put a strain on relationships. I feel very much on my own with this condition. Family & friends just don’t get it & I’ve long since stopped trying to get them to. That’s why this forum is great, these folk really do get it. I guess the saying “walk a mile in my shoes” says it all they can’t possibly know what it feels like. Hard for the folk who love you & there really is nothing that they can do.

Gentle exercises helps. Take care you’ll get there.

Bopeep12 profile image
Bopeep12

Hi Baz. Nice to meet you. You are never alone on this forum. We all understand. Keep chatting and learning with us. The right meds are out there it just feels like running a marathon to get there. Do make friends with your rheumy team they are there to help, don't suffer in silence, mess can ge change and could make all the difference to you. Good luck

Ferret18 profile image
Ferret18

Hi Baz, sorry you’ve had to join, but this is a very supportive and informative group. Take care

petalnumber2 profile image
petalnumber2

Hi Baz, When I first saw your post I thought you might be my brother Baz. He doesn’t have RA but suffers instead with an

auto-immune condition which affects his bowel.

Anyway, I’m pleased that you have found Health Unlocked and joined lots of people who can listen and help you with your questions.

I have had RA for 10 years now and have been prescribed quite a few different drugs over the years until a drug which suited me best. I still have stiffness and flare ups, but mildly compared to the first couple of years with this condition.

Don’t hold back if you have questions or concerns. There will usually be someone here who has answers or can guide you,

But, your Rheumatology Doctor and team will always need to know how you are progressing.

All the best to you :)

Bluepegasus profile image
Bluepegasus

Hello Baz and welcome. This is a great community; help, advice and solace are never far away when RA is throwing its worst at you and it feels so good when you can actually help someone else who's been in a similar situation to yourself. You're not alone.

Moomin8 profile image
Moomin8

Welcome to the crazy fold 🤪 Reading your post rings familiar alarm bells. Relationships are so difficult to maintain, however close you are. In time it will even out...just keep talking. Don't let RA define you; you are just an ordinary person who is living with RA - there is still much to contribute to and have an opinion on. Nothing is silly to ask or mention on here. Years of experience is invaluable, and you have tapped into it - good luck!🤣🤣

Durrell profile image
Durrell

Great you made the move to chat with everybody, I’ve only been here for a few months myself but it’s been so helpful beyond belief for me. It does take time to find the right medication, but don’t give up, I know I’ve felt that at times, but it was something “oldtimer” said How important it is to get your condition under control & that is soooooo right. I hope you build a good relationship with your Rheumy & team as they are most certainly your first port of call. Keep a diary of your days, aches, pains, meds, concerns etc so when that valuable appointment comes along , You don’t waste it & you have all your questions first hand, I still do this to this day & it’s extremely beneficial. Then we can like others have said here, we can share, gain & learn from each other, the old saying nothing ventured, nothing gained... keep chatting they all seem a good fun bunch & great sense of humour which is great for all of us.

Monkeysmum profile image
Monkeysmum

Hi Baz, just wanted to say hi. Sounds like you have had an awful 2020, who wouldn’t be depressed with all of that going on? I was diagnosed in 2017 at the age of 40, so I’m at a similar kind of stage to yourself. Hope now you have found us you will feel you can ask any questions you have - there really is an incredible amount of knowledge on this forum as well as support and humour. Take care xx

Idkwhattodo123 profile image
Idkwhattodo123

Hi Baz, so sorry to learn of your condition. My husband was diagnosed 10 years ago at the same age. Predisonole worked for him but I know its not a long term solution. He takes methotrexate now. Swimming and saunas also help him to relax - not possible in current climate though.

The initial pain was horrendous for him and it broke my heart to see him go through that. Fortunately the flare ups are less frequent. We are in a better place now, our relationship is stronger than ever. It brings tears to my eyes thinking back to it and knowing other people are going through it.

Keep pushing your rheumatologist. You will find what works for you.

Stay strong - there will be light.

Kags1068 profile image
Kags1068

Hi Baz

I'm a bit late to the post, but just wanted to welcome you the the RA club - eventhough it's a club no-one wants to become a member of!

I'm glad you've decided to graduate from lurking to participation! It took me a few months too. I can say everyone on here has been very welcoming, kind and friendly, which I'm sure you'll find too.

I'm sorry you've been diagnosed with this horrible condition, and that so far it's been so aggressive. It does take some getting used to, but you will. As many other posters have said, the key seems to be finding the right combination of meds for you. I'm saying it like that as although I'm still only 52, I'm a bit of an old-hand with the RA as I was diagnosed just after I turned 14. Unfortunately back in the 80's treatments were very limited and not always very successful, so that alongside aggressive disease meant a lot of damage etc early on and many ops in the intervening years. Despite all that, I'm still trundling on, and as ok as I can be.

It might not feel like it at the moment when things have been so relentless, but I believe you will find a better drug combination. Just hold on for now.

Anyway, please do join in when and as often as you feel like it. There will always be someone to share things with.

Best wishes😊

BJC1980 profile image
BJC1980

Thanks so much for the warm welcome 👍

I'm pushing to see my RA nurse in the next few weeks. I went for blood tests that showed my liver enzyme levels were not sufficient to take Methotrexate, which is the next drug they want to put me on, due to costs of biologics. It means giving up my G&T's but I guess it's got to be done! Retest this week. I'm wondering what happens if the enzyme test is never sufficient? A question for the consultant I guess. There must be other alternatives.

Sulfasalazine and Hydroxychloroquine have done nothing to help and I stopped taking them on the advice of my GP when lockdown first began, simply because there was zero improvement over 12 months. Prednisolone steroids are amazing when I'm allowed a course, but they are reluctant to let me have them long term for obvious reasons.

For now I'm on a dose of Codeine for a few weeks with my Naproxen, as my recent flare has caused sciatica in my leg and something new...bursitis in my knee - apparently common in a badly inflamed joint - it's bloody painful. It's meant I can't even get up out of a chair once sat down. Bit of a bummer 😂. I have bought special crutches and an ankle orthotic brace which are helping massively. I came to the conclusion these aids are there for a reason and I shouldn't keep fighting them off. Compression gloves for my hands have helped as well.

One thing I have realised is the onus is on me to do the chasing with the RA dept., I guess that's true of most people? The support from their end seems lacking. Not once have I had a scan on my joints. Corona virus hasn't helped, but a lot of the literature says you'll have regular meetings, tests, scans etc. I've met my consultant twice and only just met my RA nurse after 2 years. Is that normal?

Caza profile image
Caza

I’ve never been assigned a nurse, although I’m not taking Methotrexate so perhaps that’s why. In the first year I saw my consultant every three months & since then twice a year. This year only once & that was a two minute phone call ☹️ Another telephone appointment was made for nine months time. Really not happy about it but it’s down to me to sort it out. As you say it’s down to us to do the running. I really feel for you & hope you get on the right treatment that works for you soon.

Jaxine profile image
Jaxine

Hi Baz,I feel your pain and totally understand your emotions at the moment.

Horrible isn't it! Going from normal, energetic, fit and healthy to ending up in bed suffering the agonising pain of RA. I like you got diagnosed 2 years ago and have been on a plethora of drugs and I've still not found the right drug to control my RA! It s a nasty one to say the least. But we must fight on and continue to be positive that we will find the right drug it s out there somewhere. RA treatments are progressing all the time so that s good news. This site is great when you are need of extra support, good to hear from you.

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