Hello folks,
I am still finding my way around RA ( only been diagnosed a few weeks) and the forum. Any advice for a new person? I have strongly sero-positive RA (RF very high and CCP off the scale apparently - not that I' m proud of my high scores - just terrified). I'm still early stages of symptoms and worried about where its all going to go from here. Any words of wisdom would be appreciated. 🙂
welcome to the forum.it’s a shock to be diagnosed.
I’ll post later,need to sleep.
Thank you for the welcome. Hope you're having a great sleep 😴
hi,I was diagnosed 5 years ago.my RA is under some sort of control with Myclophenate.
My most troublesome diagnosis is Interstitial Lung Disease..
This forum is very useful,there are people with personal experience of this illness.
The advice about not browsing the internet is very good.
I stick to NHS websites and this forum.
When I was diagnosed with. Lung illness,I drove myself silly looking for stuff on the net.
I find it’s best to post a specific question, I f you don’t get get any replies,rephrase the post and resend it.
I hope this helps.if you want any information,I’ll try to answer.
Thanks for your reply Oshgosh. Everyone has been very helpful. I certainly feel less isolated now that I've found the forum.
I forgot to say before,if you don’t understand whatDrs say to you -tell them you don’t understand.
If you have an appointment with the consultant take paper and pen,I use a zebra pen that clips to my top.write any questions down.
As the doc covers your questions,tick them off.
What question is left at the end,you can ask the Dr.my RFwas ridiculously high when I was diagnosed.
I believe it’s with reasonable limits now. I’m pleased that you’re finding the forum useful.
Thanks Oshgosh, You've had a lot to deal with alongside the RA. Thanks for the apt advice. It can be a bit rushed and tense. I'm glad to hear that your RF score has reduced. I asked if they retested them at a later date to see if the meds have helped but I was told that once you have RF or CCP anitbodies this doesn't change and there's no need to retest the levels. I did think this seemed odd as I had been tested 12 years ago when I got diagnosed with fibro and had no RF or CCP antibodies present in my blood at that time. It seems to me that if you don't have them and then develop them that they must be subject to variation ?
I was in the same position in 2019 but am doing well. Getting started on medication before you have any joint damage is key so don't think too much about it, just follow your medics' advice.Lots of support here and go to the NRAS website for information - they have a great helpline too.
The best advice I had when first diagnosed was from my GP who told me not to research too much and to only read stuff from dependable sources so I stick to the NRAS, Versus Arthritis and NHS websites.
Yes, and make use of this forum , people are very kind, helpful and knowledgeable
Thank you yes the forum looks like a treasure trove of info and kind people
Thanks for replying Boxerlady. It's all a bit overwhelming at the moment as I already have Cfs , Fibro and osteoarthritis too. All connected to hypermobility. The NHS rheumatology nurse has been very helpful so far. As you say best not think too much about the tabs and try them out.
Hi,
I was diagnosed just under a year ago. I think the best thing is to try and stay positive and have a good attitude. Although it can be very hard some days. But you need to keep getting up each day and fight to good fight!
I welcomed any treatment that was given my way and haven't had too many issues with the drugs so far. I have just recently started biologics and things are so much better now. I went from being able to climb multiple mountains in a day (a year ago) to not being able to climb the stairs or get dressed without help. For the last three weeks, I am virtually pain free. It's amazing.
You also need to take control of your treatment as much as you can. If things are bad, don't sit and wait till your next appointment. You need to keep on top of things as much as you can, following up on prescriptions, blood tests, keeping a track of your pain levels etc.
Talk to people about how you feel as well.
I hope things get better for you soon, you are not alone!
Thank you Munro76. That must have been a shock for you. My symptoms have been slow to build up so far. It's good advice about self management. It's a lot to get your head around. I feel like I'd quite like to run away from myself but you know how that approach goes 😅.
Very wise advice. The only thing I would add is saying ‘This is not going to beat me’ has been a great motivator for me, particularly if things get really tough
Hi and short answer with good medications these days really nothing much. I believe RA might be easier to treat if set positive and we may respond better to those medications. Try not to read the horror stories on the internet as Dr Google can be frightening. I know not everyone achieves remission but a lot do, and although RA might seem a bit scary in truth it is treatable and be optimistic as it’s a journey you may well have some blips on the way but it is not fatal and in the UK the NHS does give us access to expensive medications which do help. I don’t have a real obvious outward sign of disease and lead a normal life. I can only encourage you at the start of your journey to keep a diary and then you won’t forget any symptom when you see a Rhumatologist. Hopefully that won’t be too long. X
Thanks Medway-lady. Yip I can see how a positive attitude towards the meds could help. Also great advice about writing stuff down before seeing the doc too. I have already seen the consultant - very fast with new patients here but slow on the follow up. I think that's what left me reeling. I saw the Gp then by 3 weeks later I'd been assessed and diagnosed. I know I should be grateful but my heads still catching up !
welcome. Why don’t you give the NRAS helpline a ring. You can talk things through with them and they can send you some useful literature. You are not alone. X
Thanks Madmusiclover. I did consider it today then had a wobble. But posted here instead..... so baby steps into acceptance I guess. It would probably be good to talk to someone who gets it. Thanks for the prompt.
Aw. You go at your own speed. Acceptance is a big one. We are here for you.
Sorry this is short, I'm off to work but please see some of my first posts!! We've all been there but this community really helps. Take care and good luck. X
Thanks Woodstar1 🙂
welcome, I am sorry your diagnosis brings you here but you will receive amazing advise and understanding here! Meds are there to help so don’t be scared, it may take a few attempts to find what suits you but there is something out there that will help and early treatment is vital to stop joint damage. Be your own advocate and keep your spirits up!
Thanks Zip for the good advice. Spirits and up and down like a yoyo these days !
When I met my late sister in law over 40 years ago she was very disabled by RA and went through many operations to try to repair her joints.......I was very scared when I was first diagnosed that I would be like she sadly ended up through RA so now I more than welcome any of the treatments/drugs offered (as long as I can tolerate them) I'm happy to say that due to today's modern medicines I'm in a very different place to where my sister in law was obviously I still get fed up with it all and have my 'moments' but please trust the drugs and don't worry too much about taking them x
Thanks Gladders. I have a couple of friends who have been very affected and its one of the things that has worried me too but as you say there are different meds these days and we are all different too. Hoping I can find the best one quickly.
It is very difficult when you are first diagnosed. We have all been there. We have all been scared about the medication but you don't need to be. Meds will be introduced slowly and you will be kept a close eye on. You will have regular blood tests and anything untoward will be dealt with. To be honest I was more scared of the disease than the medication. Just follow the advice of your rheumatologist. They know what's best for us. Try not to worry and keep posting to let us know how you are doing or to ask anything you like. If we can give you answers we will if they are medical questions we can't. When I was diagnosed, 21 years ago, I thought it was the end of the world. I can assure you that it isn't, it is just the start of a new one. Try to stay positive. x
Well put, I was really frightened, my mum had twisted hands etc, now over 20 years later thanks to medications my hands are normal just odd bit of puffing over right knuckles. My left foot was straightened years ago and life is normal apart from 2 tablets a day and 1 injection a week. That’s about it, I do remember asking my consultant about wheelchairs and he laughed and replied never with any luck and he was right.
Thank you for your reply.
Thanks Sheila-G. The side affects worry me as I have a poor track record with most medications, even basic antibiotics, so these medications look a bit daunting. But who knows, I may be worrying over nothing.
It was a shock to me too when I was diagnosed in 2008 and didn't really know what RA was. So agree its daunting, but keep positive and always seek advice. I have the motto that I manage my RA and don't let it rule me. Exercise is good and does give you more strength and stamina to manage everything, but give yourself me time to.
Thanks Twinke, I have noticed that walking is really good for me - and not too strenuous !
Hi I was diagnosed about five years ago as Strongly Positive, like yourself. Had a few very painful episodes which I'd mentioned to my GP whilst seeing him for something else and I too was quickly referred and diagnosed. I was told they intended to "treat to target" meaning no pain and no joint damage. I was immediately put on low dose methotrexate but I had flares until it was upped to 20 mg by injection (didn't get on with tablets, made me nauseous). So, was told a year ago I'm in remission.
It did worry me when I was first diagnosed but like everyone says, try not to project. And keep coming to this site, it really helps me. Best wishes.
Thanks GinnyE, thats great you are in remission, long may it last. I may be starting Hydroxychloroquine to begin with so hopefully it'll be a good start.
hi, it can be really scary and dr Google can make it do so much worse. Just before lockdown I have as diagnosed, at that time, I think it’s fair to say that I had barely 20% of the use of my right hand. Since then,I know how lucky I am, I’ve been taking my meds and to be honest you wouldn’t know. No one knows what’s round the corner all I can tell you if you have support the world knowledge on this site. Just be kind to yourself and to a degree go with the flow and on that note, I’m off to go swimming.
Thanks Wraf22 its a whole new world for sure. Its like someone changed the rules when I wasn't looking so going with the flow feels like good advice.
it is control what you can, adk for help in understanding what is going on and with things. My neighbours have totally surprised me, I was struggling as I managed to break my arm in December. Because it gave them a chance to help, they were by my side, even cook me Christmas dinner. So be kind yourself and let others be kind to you too
Sounds like you have lovely neighbours Wraf. You are right about kindness. It is priceless. I like your comment about letting other people be kind too.
I am the same as you, with high CCP and rheumatoid factor. I remember feeling terrified five years ago when I was diagnosed. I have never taken meds. I immediately shifted to a anti-inflammation diet, began exercising every single day and changed my outlook on life. I overhauled my life. I was reluctant to get on meds because I saw what they did to my mother. She also had rheumatoid. It took about 6 months for my changes to kick in. I still get flares but they are rare and mild. I manage them with ibuprofen. I also go back to a very basic diet. There is a learning curve to this style of managing rheumatoid. It's not for everyone. Some people would rather take a pill. But I am so happy that I didn't get on meds, especially during covid. Even if you choose to get on meds, know that you can shrink your inflammation through diet. A lot of people will tell you otherwise. Don't let the horror stories drag you down. You can manage a life with this disease. I also have Hashimoto's and limited scleroderma. I don't take meds for those either. I have managed to keep those diseases silent.
hi , I’ve been trying to manage my ra without meds, really don’t want to take them, where did you get the info from for anti inflammatory diet . Would really like to have a go at it. Thank you
the most friendly and easiest anti-inflammatory diet is the mediterranean diet. My diet is plant-based - except I eat eggs and fish. No dairy, no gluten, no refined sugar, no processed foods. Eating whole, unprocessed foods is anti-inflammatory. My diet is pretty restrictive but it works for me. I don't view it as restrictive. There is the AIP diet, which includes meat, but meat, the way it's processed, seems inflammatory, which is why I didn't choose that one. Don't forget exercise, if you are able. It's crucial. Sleep as well.
hello- I’m in the same type of situation. Trying to manage the last few years without the meds, which can be tough on your body. I know diet and supplements do matter a lot. Do you follow the aip diet? What supplements do you take, and what kind of exercise has worked the best? Thanks for any advice, and continued luck to you!
Managing without meds shouldn't feel tough on your body. It should feel really good. That's the first thing. My diet is plant-based, but I eat eggs and fish. No sugar, no dairy, no gluten, no processed food. That's my diet. You really shouldn't have to rely on supplements. I did in the beginning, but tapered to a few that I use if I sense some inflammation coming on. I've found that cardio is the best form of exercise for me. There's something about the blood flowing to all the joints that makes you feel great. I do a lot of stretching and some weights, but mostly cardio - zumba, dance classes. I'm not opposed to meds and if I need to use them one day, I will. But I figure the longer I can go without them, the less damage I'm doing to my body. My mom had RA and she took prednisone daily and it crushed her. Nowadays, rheumatologists are trying to steer patients away from prednisone, but the DMARDs are still pretty toxic. It took me about 6 months to find relief and then the pain and symptoms gradually disappeared from then on. I consider myself in a low-disease state- my blood work is always normal. That's what worked for me. I hope you find something that works for you. If you're in too much pain, you might want to try the diet/exercise/lifestyle changes alongside the meds. Then maybe you can reduce the dosage and gradually taper off. Best to you!
Thanks Asinrime, I have already started with the changes you describe although I'm staying open to the meds too. It bothers me that medication silences the immune system symptoms but we don't know why is malfunctioning. I've changed my diet, lifestyle, made self care a priority and building better boundaries. A whole new life almost ! I've noticed that stress is a major trigger and sugar is definitely off the menu. I'm throwing everything at it although as you mention it takes time for changes to show if they are helping.
Sounds like you are on the right path!
Go with the flow at the start if you delay the drugs you delay the response and maybe outcomes. One size does not fit all and for me I went thro 5 drugs and some nightmares before I got the one I am on now. However I always got back on the bike no matter what as I knew I needed to find a drugs regime that worked for me and of course on average 13weeks for anything to work.
The forum is better than Dr Google and NRAS are brilliant if having a why what how day just call and they can help you in pointing out places to look or read or just be listened too.
Thanks Deeb, I can see from all the kind replies that this condition can be very different for each person but reading about others experiences is encouraging me to trust that I will find the right path for me too in time.
Hi welcome to the group ! I had already had 2 joint replacements when I was diagnosed -see my profile ) and it was a struggle to get referred to rheumy being sero-negative. I was petrified to start meds but felt I had no choice as my symptoms were so disabling. I get support from here, NRAS and a local support group and Wren project. I always read the side effects of meds (so I’m aware ) and then just take the meds. I trust my consultant but still ask about meds etc. I love this group as it makes you feel you are not alone. Good luck xx
To Naturechild and Mozart - Funnily enough I was going to mention The Wren Project - they offer online face-to-face listening sessions for people struggling to come to terms with an autoimmune disease.
It’s not a place that gives medical advice but offers support in coming to terms with your diagnosis and processing the impact on your day to day life, which sadly GPS and consultants don’t have the time for.
You get matched with a trained volunteer who essentially becomes your ‘buddy’ for fortnightly zoom sessions. They offer a block of six sessions (it’s free) with an option to extend to another six. You can stop them at any time if you no longer feel the need. This is their website: wrenproject.org/
Sorry ...MissMinto thats meant to say
Oh I wish I'd known about this a few years ago.
You can ask for their support whenever you feel the need - you don’t have to be at the beginning of your ‘journey’.
Thanks Mozart, the Wren project sounds like a great service. I shall keep it in mind.
Thanks Mozart, the Wren service sounds great. My head's a bit all over the place at the moment but I'll get there. This forum is good too. I really appreciate everyone sharing their own stories.
may I make one suggestion find a biological that works for you right away and don’t stop taking it unless side effects are bad or it stops working. I was on enbrel and it literally gave me my life back but like an idiot I stopped it because I lost a lot of weight on it ( I needed to lose weight ). I went back in it a couple months later and it didn’t work anymore. Years later I am still searching for something to work again and I keep getting worse and worse it’s a slow long miserable existence
Hi Kracker, I'm sorry to hear about your experience with the meds but thanks for sharing your advice. I hope you can find another soon. My area starts you off with the methotrexate type drugs first and I think if they don't or stop working then eventually will move you on to the biologics. I'm hoping for the best option soonest.
it is very scary to take the medicine but once you are on one that makes you feel well it will become your friend.
Thanks Smilelines. Glad to hear that you have found a friend in your meds. Its a nice way to look at it. Hope I can too.
You will find something for sure. I read on here that people suffer with side effects every week from their medication for years. My advice is to push to change to a different medicine if this happens. My doctor started me on methotrexate and it was not compatible with my system. Major stomach cramps. I stopped after three weeks. I was then given leflunimide and it was a totally different experience. Do you know which Dmard you will start with? My friend has been on methotrexate for 15 years and she wouldn't be without it so it works well for her and many others. I don't want to scare you off it.😀
Thanks Smilelines, they have suggested Hydroxychloroquine to start with. I have Cfs and Fibro and tend to be very sensitive to medication of all kinds and to get a lot of side effects . I've asked to hold off until I can focus on stabilising my cfs and fibro symptoms as this will give me a better chance at tolerating the meds. I'm hoping that the changes I'm making may slow down the RA too as it all general health stuff, sleep, diet and stress type of thing. I didn't realise how neglectful I had been of myself until I made it a priority after the diagnosis. Silver linings eh? 😅
I have fibromyalgia and my rheumotolofist said it would calm down once my inflammatory arthritis is stable. 🤷♀️ Some believe that fibromyalsia arrives only after the body has had a prolonged illness. I didn’t rush into the medications either. It took me three months to come around to the whole idea. Yes, this type of thing really makes a person stop and think. Hydroxy is one that I didn’t try. 🤞🏻 I hope it works well for you and it becomes your friend! According to my rheumotologist it is a milder DMard.
Sorry to hear you've got Fibro too. For me I think stress has been the precursor to everything. Lots of it over a prolonged period. Hope that your fibro did calm down. That would be a welcome bonus.
hHi Sorry to hear this. It can be very unsettling however I have managed to accept advice from Rheumatology and despite my reluctance to take prescribed medication. I have worked my way through taking pills. It's a difficult thing to do when you don't want to accept your diagnosis. I can however say, thanks to my medication I continue to work full time, exercise (not as often as I should) and continue as normally as possible. Good luck and don't despair too much! I now realise I'm lucky and could be in a much worse situation.
Thanks Lex, I'm sure that I will get there eventually. Its all still very new and I'm not good at changes - this is a big one but glad I found the forum. Everyone is very kind.
Hi Natureschild, so sorry to hear you’ve become part of the RA family. It seems like a mine field at the beginning. I was petrified of all the drugs in the beginning of my journey & still to this day so not relish them. But 12 yrs in they are & for foreseeable future will continue to be apart of my life. I do follow an anti inflammatory diet (basically the Mediterranean diet) keep cabs low, cut out sugar etc but it’s what works for you. Emily Johnson has recently publisher her 2nd book. Her recent is a recipe based, her first is sorting fact fiction, supplementing etc. she was at uni when she was hit with it & used her journalism knowledge to explore & create her book. Take a look at her, google, FB etc. I think she’s a good place to start as young & her research is up to date, helpful & informative. I wish you all the best with your ongoing journey.
Thanks Durrell for the reply and book ref. I'm looking at diet too and think I can see a few things that are problematic already. It's hard to work it out. Guess it will take some trial and error. Looking like tomato is a nogo 😩 I make such a good sauce too. Ah well needs must as they say.
Any new diagnnosis whatever it is can be mind blowing. Sometimes it takes a while to find the right medication for us. I've had RA for 17 years and I can remember hearing about it for the first time. Ask your professionals whatever is on your mind and together they can get you on the path to a better life style. Don't look at Dr Google .
Newly diagnosed...and about time too!!
Newly diagnosed , feeling scared and confused !!!
to take meds or not to take meds...
Finally newly diagnosed.
Newly diagnosed with RA
