Hi, my name is Debby and am new to NRAS. I am 44, married and we have an 18 year old daughter. I have been diagnosed with arthritis in my finger and thumb joints. My GP has referred me to the rheumatologist as she believes I have rheumatoid arthritis. I feel very daunted and scared about this, as I know it is a chronic condition and the treatment has bad side effects. I feel quite depressed and don't know anyone with this condition. I would like to hear from anyone with RA. Thank you x
New to NRAS: Hi, my name is Debby and am new to NRAS... - NRAS
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Debby-1970
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Don't panic! For a start, the treatment does not always cause bad side effects. I'm sure most of us have found ourselves staring at some pills, trying to psyche ourselves up to actually taking them for the first time, thinking "so, it has come to this .... what's going to happen?" And then, in the majority of cases not much happens at all. In fact, that can be the worst thing, the fact that most of the drugs we take are slow to show what they can do. But again, very often they do work well in time.
It is important to look after yourself with this disease .... a good diet, exercise, plenty of sleep and so on. Those things really can make a huge difference alongside the drugs. But I believe the majority of people live well with RA and similar diseases. I have psoriatic arthritis and have struggled with it in the past, but I don't really find it depressing or scary anymore.
If you do have RA and it is affecting those few joints, the likelihood is that it will have been diagnosed early and that bodes very well for living a perfectly normal life, although with some adjustments perhaps. There are worse things for sure. Though don't get me wrong, I can quite understand how you feel right now. Be kind to yourself, work through it & seek out all the support you need. Good luck.
Debby-1970• in reply to
Thank you for replying! These sites are so useful for talking to others in a similar situation! X
You wll be spoilt for choice here,
Welcome to our site, how can we help ?? We have many people here that will give help and support
BOB
Welcome Debby. I think most of us were knocked sidewise to some extent when diagnosed, especially if we'd not needed to take much more than a paracetamol before. Whilst it's true the meds we need to take in an effort to control us are strong in comparison they are necessary if we're to help prevent the damage caused by RD not only to our joints but also our vital organs. It's not a given you'll have bad side effects but as I said they're necessary & compared to the pain of uncontrolled disease many are tolerable. Like me you're fortunate in that you've been diagnosed early, that is a huge benefit. The likelihood is the earlier you start on treatment the better the prognosis. You will read of people struggling but that's the nature of sites like these, the disease is so variable & can change on a whim but also many have been pushed from pillar to post before getting a diagnosis is made & so have quite a few problems when joining us. So you see you're in a good position actually, if you've to have RD at all it's been detected before any damage is done. I thank my GP for her knowledge of RD & referring me. I was on my meds just over a fortnight after going to her complaining of sore & swollen feet, I had not one clue what was wrong!
I don't know if you've taken a look at the NRAS website but it's full of helpful info, you'll find it will explain in detail about the disease, your first Rheumy appointment, the meds used right through to the remission wall & real life stories about living with RD. You'll find it here nras.org.uk. If you choose to look into what RD is all about do please keep to reputable sites! Sadly it's a misunderstood disease & there are many scare stories out there & to the uninitiated it can be most confusing, scary.
I hope you enjoy being here, we've lots of experience between us so ask away if there's something you're unsure of or just want to chat, we're all in the same boat & totally get how it is to live the disease. Yes it's chronic but that doesn't mean the end of everything, just a little adjustment here & there. 
Thank you! It's very daunting at first. I suppose it's natural to panic especially when you're not sure what is going to happen. I know the dangers of not looking at unreputable websites and have only looked at Patient Choice and the NRAS website. I was a bit worried when I read that Methotrexate was one of the treatments ; I work as a paediatric secretary and most of our children with leukaemia are put onto that when diagnosed, so I am aware that it's a pokey drug. Thank you for the reassurance. X
I'm not sure if you came across this page whilst you were looking through the NRAS site, it explains how MTX was found to be useful in managing RD & related diseases. It's the one med that's controlled me, proved (if I needed proof) when I've had some time without it. nras.org.uk/methotrexate-in...
If it is a DMARD suggested for you I would talk through your concerns with your Rheumy. I recently needed a review for disease activity & we talked through the options, increasing my MTX, adding a different DMARD etc but it was considered as I've had good results from MTX for 6 years now we'd increase the dose rather than risk upsetting the applecart. I'm titrating up from 15mg to 20mg in 2.5mg increments as I have history of abnormal LFT's when increasing the dose & being monitored fortnightly, results are promising. I'm on subcut & I found that even though I'd never had cause to inject myself before it was very easy, in fact just had a changeover to the pen & have experienced very few adverse reactions, just less appetite & a bit more tired the following day, acceptable to me for the benefits it gives! My folic acid is directed as 1 x 5mg folic acid every day except MTX day though some people manage on less.
I'm pleased you're keeping to the more reputable websites but again do remember that most people using forums are struggling or like you newly diagnosed so it can be an imbalanced view of any one of the meds & MTX is no different, in fact biologics can cause greater problems yet often MTX is used in conjunction to achieve a better effect.
Just be guided by your Rheumy!
Thank you - your advice is really helpful. I'll do whatever the specialist suggests. I don't feel so alone! X
• in reply tonomoreheels
Well said. The degree to which we are affected by RA varies so greatly. In my physical fitness class for people with RA, some are hardly affected after 30 years of diagnosis. The RA only affected a few fingers while others have fingers, toes, joint replacements because of RA after only 3 years of diagnosis. Medicine has come a long ways and the old "look of crippled up deformed hands" is practically gone because of early intervention nowadays. The best advice ever given to me is to drink a lot of water especially a day or two before and after treatments, eat less meat and breads, pile on the beggies and fruits especially before treatments. Get good sleep, really good sleep. Do what you've gotta to get sleep in your schedule. Stay active as you can. Now it's your turn to take care of yourself.
nomoreheels• in reply to
Or even just eat healthily, I'm sure that's served me well. I don't deny myself the odd sneaky treat just not every day, save it for weekends or reduce the amount of things which aren't so good if you can't do without puds. We both like fruit crumbles but I reduce the normal recipe sugars to a quarter & flour by half & add either crushed nuts or rolled oats, just as tasty or even more so & adds texture!
• in reply to
spell check changed veggies into beggies.. haha. Sorry
Hi Debby!
I'm sorry that you probably have RA, but welcome to the club
I have been diagnosed about a month ago and its a hard adjustment. I was definitely somewhat depressed at the beginning, but I have realized that its not the end of the world. Keeping as active as you can, eating well, and talking about it have helped me.
The good thing is that meds can work, and don't expect horrible side effects. Some people have bad reactions, but most don't. You will have to try and see - but there's a variety, so if one is bad, another will probably be good.
I was all hyped up imagining how bad methotrexate would be, but to my surprise, It hardly made me feel sick - and I have already learned to self-inject - which I think is really cool (hope that didn't make you squeamish - but don't underestimate your ability to cope with RA!)
You will be fine.
Just keep breathing, and keep us posted!
All the best,
Noa
Thank you! This is so great - I only put my post up less than 12 hours ago and already have had 4 replies! I think of myself as a strong person, and this blip in my life won't beat me! Thank you for the advice regarding Methotrexate - but I'm not sure about self injecting ... that'll be something I'll have to get used to I'm sure! Xx
Hi Debby, so sorry you potentially have RA. I was diagnosed in October last year and I too was devastated on learning I had RA especially as, you say, it is a chronic disease and also because I have watched my Mum suffer from it for over 28 years!
However, I have now come to accept it and know in my heart that I will be able to manage it as long as I remain stress free (I had an almighty flare from a period of stress recently which has taught me a very valuable lesson in minimising my stress levels). I have also changed my diet somewhat and given up gluten, processed foods, refined sugars and dairy milk. I have always been a vegetarian.
Panicking, I find is currently part of the process, as I did recently and I too was afraid of taking MTX which is what I believe my rheumy will suggest on Wednesday but our lovely virtual friends on this site have helped put my mind at ease.
Take care x
Thank you for your lovely comments! Loving all my new virtual friends! Xx
Me too!! The diet change has been absolutely key in managing my RA especially if freshly diagnosed I think....
Hi! I am wary of changing my diet until I've seen the specialist. But of interest, what changes have you have made to your diet?
• in reply toDebby-1970
Welcome to this community. I changed my diet well before my official diagnosis and think it did help a lot - mainly with GI problems and I lost a lot of weight which is always helpful for the load bearing joints of course. I can see why you might not wish to do this prior to seeing the rheumatologist however because there are so many forms of arthritis which can affect the hand joints apart from RA. Gout for example - which is dramatically affected by diet.
However I wouldn't rely on a rheumatologist to advise you on dietary changes if it turns out you do have a form of inflammatory arthritis. Once you've been seen and assessed by them you could be quite methodical and work out if certain foods help your arthritis or worsen it.
There's always the possibility that your problems are purely mechanical and not part of an autoimmune disease such as RA. I jumped the gun when I was at your stage and have lived to regret it because, although I do have RA, I have other broader autoimmunity (a multisystem autoimmune disease) which has caused me far more suffering than the arthritis side of things has. For a long time on here I felt a fraud where many people suffer so badly from joint related problems. However there is much more to RA and autoimmunity than just arthritis usually.
I also think there's always a danger that we find a disease and fit our symptoms to it as I've done in the past. So I would advise you not to worry unduly about whether this is RA, certainly not to assume it is, or whether you will be advised to take DMARDs until you've seen the rheumy. If you do have RA or an associated disease then you will be well informed by having read posts and posted with questions - and hopefully have a very early diagnosis and treatment will be very effective at controlling things. Good luck!
Welcome Debbie,
Diagnosis of RA is definitely a big thing to take on board and the replies above say it really - don't panic; help yourself by adjusting to a healthier diet (unless you are already there with that one!), regular exercise but not too much, be aware of the effects of fatigue and stress upon the cycles of activity in your condition, use support networks including friends, this site and the NRAS help line if you feel the need, a lot of us use mindfullness meditation to keep our stress levels dampened down and some use therapeutic support (counsellor/therapist). The meds can have undesirable side effects, but not always, some of us drink peppermint or ginger herb tea to help with any sense of nausea- some take their meds last thing at night some in the morning (I take my methotrexate on Thursday mornings with porridge and then Thursday pm and Friday am can be a bit uncomfortable with a persistent headache and some nausea but currently manageable with work and then I get a reasonable weekend). Drinking loads of water definitely helps and any headache comes back or worsens when I forget to take water in.
Give the treatment time to settle in and work for you as it can take some months for the meds to get up to speed and be the right dosage for you.
As you have arthritis (possible RA) in your thumb joint ask to be referred to a occupational therapist who will advise you on how to best protect this joint when going about your daily life (I was given soft splints to wear when doing things like gardening and making the beds and they make a difference so even if it's not RA I would still ask for an OT referral).
All the best
Ali
Thank you. I am starting to cut down on caffeine and alcohol. But want to wait until I've seen the specialist before I make major lifestyle changes! I will try getting used to ginger tea. Thank you for the invaluable advice xx
Basically the general rule is that Rheumatoid Arthritis is associated with acid forming in the body therefore an Alkaline diet is best, avoiding wheat dairy caffeine and red meat, it's a huge lifestyle change but it's amazing! I feel the best I've felt for a couple of years now - have bags of energy and virtually pain free, try Honestly Healthy for recipes and Margaret Hills the drug free way for how it all works - your rheumatolgst won't back this all up I expect but your might naturally at some point feel like you neec to to take a bit of charge. Good Luck x
What we must ensure though Sandiedc is to replace the vitamins we lose in as many of the foods which are suggested to be taken out of our diet have natural vitamins (not from her site though, how expensive are they?!!) It's also a good idea to have your vitamin levels checked before starting a new eating regime & it's recommended they're repeated regularly thereafter for however long the diet is continued.
Always best to keep your Rheumy up to speed on any dietary changes as it can show false negative/positive results on bloods.
Absolutely agreed I supplement with Multivit's and Iron plus Fish oil and make sure my calcium intake is taken in with my vegetables, I'm a walking fruit and vegetable really....Never thought i'd see the day I stopped eating red meat!! You have to be very strict though and make sure you get in everything you need in your daily diet.
I'm afraid it wouldn't suit me, I like my occasional steak, slow cooked roast lamb & bacon butties too much! Doesn't stop me wishing anyone well who chooses that path though. The only thing I would question is taking multivitamins, maybe better to tailor to individual vitamin test results, too much of some aren't advisable with RD, in fact can be harmful. Then of course RDI, too much, too little? It can depend on which plan & how closely is followed but I would think that's well documented in your choice & as long as you're aware some foodstuffs are fortified with vitamins. You've probably come across NRAS page across this when researching eating plans but it doesn't hurt to revisit it if it was some while ago nras.org.uk/diet-rheumatoid...
Are you finding it helpful to you? Even though I try to keep to my Med diet on the whole I do find it interesting how diet can help us.
Thanks so much for this will take a read, ,a very good friend of mine is a dietician (NHs) and it was her that recommended the multi-vits but I'll take a good read, I have a green smoothie most mornings which has avocado kale celery cucumber etc then a beetroot salad or a cauliflower based tart and then veggies and chicken/fish for tea so all very healthy and rich in vits...I've found it so helpful I dabbled in it last year but realised its all or nothing. No aches now for 4 weeks and my energy is back to normal - interesting journey and the reason i love this site is the warmth and all the help - by the way I think all your advice is amazing - you're an inspiration to all these people on a tricky journey.
It's more about what is advised to take for RD, we're not "Joe public" having or needing a boost in vitamins, certain vits we need to take less of, some more, it's about getting the balance right really. Love the sound of the green smoothie, avocado is one of my faves. It's good you've committed to it, it sounds as though it's working for you. I'm careful to avoid what makes me sluggish, it's important to listen to your body I think.
It's all about managing your expectations, and taking things as they come. I don't worry about the future, but more about what I can do to make my day better, brighter. Having a young child isn't easy at the best of times, but my son was only 4 when I was diagnosed with cancer and a year later PsA.ts not easy, but of course as parents, you just seem to manage.
Being truthful with yourself and those close to you. RA disease is such a variable condition, so you need to be ready to feel worse one day and better the next. plan your days around how you feel. I describe my way of thinking as a glass of water. You take a gulp out for work, a gulp here for your child, a gulp for housework, etc etc until eventually the glass is empty. Sometimes if you plan correctly the glass is empty when you're ready for bed and rest. Unfortunately for a lot of us, the glass is empty way to soon, and that's where planning comes in. If I'm having my son for three or four days (he's 12 now) I tend to rest before, which replenishes my glass of water. Or if I'm planning to do loads of washing, I don't plan on changing bedding, or clean the freezer out, etc.
My situation is different to yours as Im affected by Cancer as well, and like others have said, you might have caught it early and the effects might not be so delbilitating. Also remember there are new treatments every year, and one treatment doesn't suit everyone. My mum has been on MTX for twenty one years, I tried it for 8 months, and it was no good for me.
Managing pain can be a real problem, but again it's about expectations and planning. There's literally only one person in the world who is a true expert in the field of YOUR disease and that's you, what I mean by this is, you're the best person to judge if the pain is too much, whether you feel a treatment is working for you etc.
So be honest with yourself, if you're not happy about something then let your Rheumo know. Be honest with the people who love you and let them help where and when they can. Because I'm sure they feel pretty frustrated and useless because they won't be able to magic your health problems away.
Good luck with everything, they're a great bunch on here, don't be scared to ask the questions you might not want to ask yr rheumo etc.
Wow! What an absolute inspiration you are to everyone around you! Thank you for your advice xxx
Good morning and hi!! You already had loads of advice ! My point for you tho is don't panic lol. It will be alright on the night.
Also I know you heard of mtx through working with poorly children but our dosage and their treatments even tho issuing the same drug our amount is generally lower.
So I hope you get a definate diagnosis soon and you get your treatment , often just oral tablets initially and get dorted. I know many people who went onto methotrexate tablets and have a normal way of life ! Fingers crossed (if you can!) have a great Sunday x
Thank you so much. I think it is the not knowing all this information that makes it difficult to understand. I feel much better emotionally. I'm just going to make little changes to make life easier until I know what's what. Xx
One of the main things you need too culture is a positive attitude to this complaint and learn how to understand what is happening to your body.
There are many DMARD type medications that are on offer and many are slightly different in their contraindications so you will find if one does not work others may be tried. that are matched up together and sometimes -TNF medications can accompany the DMARD medications and this cocktail generally suppresses the immune system and slows damage down
Personally when I am bad I use a TENS machine and on occasions they can suppress the pain we suffer from.
With regard to pain medications, sometimes I feel it takes a while to find what is good and does not cause problems, as I generally feel it is important to get these sorted as the contraindications sorted
All the best
BOB
Debby-1970• in reply to
Hi Bob - thank you for that. I agree with you - a positive mental attitude is key to such a chronic condition like RA, and I usually do have one. However when my GP said that she believed it was RA and referred me to rheumatology, I was then left in limbo, knowing it was pointless worrying until I knew for definite that that was what it was. However, it was inevitable for me to worry and become anxious. Losing 2 close family members recently and having a cancer scare myself, my nerves are not as they should be!! However, when all is said and done, I am sensible, and I have had a lot of advice and support from this wonderful community, and I have to say I feel a whole lot better about it all. I will learn to live with it. It won't beat me, and I will adapt.
Thank you xx
• in reply toDebby-1970
Hello Debbie
Remember we are always here and when we get into the subject support and understanding will help you getting through it all as sadly we will never complete a cure fully we all can hope for is a long period of remission
I suffer PSA and was always told I would go into remission when I became sixty five, Now I have four months to that magic age, they say I am now in a form of remission. Personally if I keep saying it I will believe it, although sadly I still open my medical cabinet that contains my medications, that have now become part of my daily Diet.
Good Luck all we can do is give support and understanding in the off chance that a magic bullet is found or a genetic marvel is found and we all are cured over night
BOB
Hi Debbie,
Welcome to NRAS. Despite what we all put up with with our RA ,we all try to keep on smiling. I too have only been diagnosed for two months .I found this site and now I have lots of new friends to chivy me along when I breakdown or I have a problem. The same as if some one elce feels down I like to help them .
You are not alone we are all here when you need someone to talk too. We all understand what you are going through because we have been there too.
Don't worry about the meds. Some people suffer side affects some dont. Luckily so far I haven't had any. I am on Methotrexate.I was worried after reading that they can make you sick. I have been taking them for four weeks now and I feel fine.
Good luck. Remember we are here.
Xxx😃😃
Oh bless you! Thank you - I feel the same way.. Someone else told me that the dose of MTX is a lot smaller for the treatment of RA. I too usually have a smile on my face regardless, and am a positive person. But I am human and I do falter! Thank you so much. I can't believe the support and kindness there is out there! xx
Just to echo Ali-H's tip about drinking loads of water while taking Methotrexate - it's such a simple thing that it's easy to overlook. But I think good old H2O is vital to Mtx takers.
Also, although Mtx is used as a chemo drug the quantities involved are so very different that I see it as almost a different drug when used for RD ..... after all, there's a huge difference between taking one aspirin a day and a whole load of aspirin.
Thank you for all your advice and support,that really keep me bold to face the problem.
Hi Debby,
Welcome to the site and glad to see your other post about how helpful you've found it. Many people have suggested our information on the NRAS website but we also have a helpline team here to speak with you on 0800 298 7650. You probably have lots of questions ahead of your appointment with the rheumatologist which they'll be happy to answer and give you suggestions for things you can ask to get the best out of the time. We also have telephone support volunteers who have RA if you fancy a chat with someone of a similar age/situation.
I hope this helps and best of luck with everything.
Ruth Grosart
NRAS Digital Media Manager & HU Admin
Debby-1970• in reply to
Thank you so much! I will certainly keep that in mind xx
Hi Debby, sorry you have joined our creaky and painful gang, i was diagnosed two years ago im 45 and my youngest is 10 years old, i am guilty of being a lingerer i read on here a lot and dont comment much, but from what ive seen everyone is really helpful and friendly on here, hope you get some answers and help soon.lisa x
Hi Lisa! I am honoured to be part of the creaky and painful gang! Love it! Just need my ovaries to pack up and then I'll be all set!! Xx
hi debby dont be scared i was taking rozehip capsuls for years which allowed me to carry on working until now i have RA and OA for many years now but since i had a MINI TIA and CANCER my arthritis has gone mad so please dont worry and i hope you find your pain releif xx
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