Newly diagnosed with RA.... Bewildered and scared!

Hello

My name is Maddie and this week I was diagnosed with RA, it' s taken nearly two years to get this diagnosis.

I was told at first that my blood tests were normal and it was'nt until my right hand swelled that I was sent for a scan which revealed inflammation.... I was also told by the consultant that my blood tests had revealed borderline positive for RA back in August 12 but I'd been told by my GP they would class the result as normal!!!???

Anyway... I had a chest X-ray, more blood tests( results not yet known) and put on 7.5mg of MTX which terrifies me I've been told that I will get a helpline number in the post and to ring my consultant's secretary if I have any problems.

I do not know anyone else with RA and nobody around me seems to understand my fears and confusion.

Any help, support and advice would be very much appreciated.

Maddie

58 Replies

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  • Hi Maddie, it's a tough slog at the beginning and its not just about feeling ill - overwhelmed is quite common i think. you will definitely get support and lots of understanding here!

  • Hi Swapshop

    Thank you so much for the prompt reply!

    Overwhelmed is certainly how I'm feeling right now, so much information to process as well as learning to cope with the fact that I have RA and what that means.

    Thanks again

    Maddie

  • hi i was the same totally shocked belwirdered running round like a headless chicken after 4 months decided just to go with it and let things take their course and it calmed me and feel more relaxed for it .try not worry it is all overwhelming i thought i was going mad. but your not .

  • Hello Maddie and welcome. Sorry you have had to find us after two years in limbo but now you are here you will hopefully get a lot of support and feel less isolated. Keep coming here - we all struggle with lack of understanding from the wider community to a greater or lesser extent. I didn't know anyone with RA until I made friends with some of the people on this forum - considering that 1 in every hundred people is supposed to have it its damned hard to bear and generally lonely but not now you've found us I hope.

    MTX is a really brilliant drug for some of us and not nearly as scary as the info sheets suggest. You will be well monitored on it don't worry. If you want to tell us a bit about yourself by writing a short profile piece to go on your member's page that would help us all to know more about you - if you feel like telling us of course. Tilda x

  • Maddie,there is nothing to worry about when they get you sorted out. What your feeling is we all have on here. I've had ra for nearly ten years and i still get confused and worried about what is happening to my body,but with the great people on here they will always and i mean always will support one another in times of crisis.If there is anything you want to know someone here will have the answer. They will cheer you up and they will share any good things with as well. So welcome and we will always be here anytime during the day and night. xx

  • It's all rather alarming at the beginning with the diagnosis and the medication, getting your head around it and working etc. You have come to the right place to get help and to air your rants when you are down, we have all done that. The only thing we are unable to help with is medical, we can only give you are experiences, as none of us are medically trained.

    We also like to be silly at times and do blogs unrelated to our illness. Take time to have a look at some of the blogs and questions, it may help you to adjust and lay any fears that you may have. The biggest hurdle you will have to overcome is coming to realise that you have the disease, once you have got your head round that it's half the battle.

    Take care. xx

  • well said george thats what i was tryng to above lolxxxxx

  • Thank you all so much for your prompt replies, I will post more about myself and read some of the blogs soon.

    I have been feeling quite down and teary today and your replies have lifted me already :)

    I'm going to start taking the MTX this weekend...OMG!

    Thanks again

    Maddie

  • Hello Maddie

    I was only diagnosed last April but had symptoms from year before, ican relate to how you are feeling, its a very very scary time to be diagnosed with something youve probably never heard of before and it just seems that they tell you then send you off all alone with leaflets to read and you end up scaring yourself silly reading them. On top of all that no-one who doesnt have ra will understand how you feel or what you are going through.

    Ive found this site and the lovely people here have helped me not only understand ra but also all about medication, flares and really everything there is to know about ra.

    We do have a giggle as well as we all need to keep our chin up.

    Take care, digest your info then post & blog like mad, i asked, and still do, loads of questions. If you dont ask, you'll never know.

    Take care, things will get better.

    Jo

    Xxxxx

  • Hello Jo

    Thanks for your reply.

    You have completely summed up how I'm feeling...diagnosed on Tuesday and sent away with two leaflets and a prescription! It's not the Consultant's fault or rather the Professor as I appreciate he has to stay detached and he's dealing with people like me everyday....will probably be better when I get the helpline number etc and now that I've found this brilliant site also!

    It's so true I've scared myself silly by reading about the side effects of the drugs but I have to stay positive and understand that they are going to help me.

    I've told people about my RA this week and I've had some strange comments, one being " I hope my hand doesn't end up like that" and "ok....well it's not like it's going to kill you"

    In time I'm sure comments like that won't hurt so much :)

    Thank you again

    Maddie xx

  • no they wont hurt you in time i just say you dont understand about it at all when you do then comment they shut up soon lol youul be fine xxx

  • Hello Maddie, sorry to hear your diagnosis, but welcome to our very special club! All the posts above cover everything I would say so I just wanted to say hello. I am 14 years diagnosed and was in a right low point earlier on in the week and within 24 hrs the lovely bunch of people prodded me and got me smiley face up again! I just know they will for you too. It's so normal feel confused and scared and it is very isolating at times so feel free to ask away. Hope you get some relief form your pain soon xx

  • Maddie

    Only glad to help. Ive been where you are very recently so can sympathise.

    Everyone here has been there, at different times and will help you heaps. They all know much more than me with meds and im sure you will feel much better once you try and get your head around it all.

    Tak care

    Jo

    Xxxxx

  • Hello K3let

    Thank you so much for your kind words, I'm already starting to realise how fab this site is going to be....I've been feeling like I'm in an isolated bubble since Tuesday and with going to work also it's been totally overwhelming!

    Will be starting my meds tomorrow....I wanted to wait because I don't know how I'm going to feel and didn't want to be ill in work.

    Thanks again

    Maddie xx

  • Sorry to gush guys! But you're all giving me the confidence to take those 3 pills tomorrow!

    Thank you :)

  • It can be useful to call it Rheumatoid Autoimmune Disease to avoid the "its only arthritis" brigade? When people say stuff like "its not like it can kill you" then I've found it useful to reply quite cooly "well no - although it can attack the heart and lungs (very rarely but they don't know that!) of course. But it is an autoimmune disease that I'm just starting a chemo drug for - maybe you should look it up? but if you do then don't get too alarmed for me please" and walk away looking indifferent if you can. People around you need to know that RA is serious and feel scared for you so that when things improve (and I'm sure they will) they don't just assume you are cured and that's the end of it. Sometimes shock tactics are the only way. No one likes putting their foot in it! Xx

  • well said tilda ive said those things too it stumps people honestly especially the chemo bit it shocks xxx

  • Love Tilda's put down...that should shut up the disbelievers, and sadly you will encounter quite a few.

    Do take the pills with confidence, they can give you your life back and 99% of people have no trouble with them at all. But don't try to do everything or learn everything at once, this is quite hard to get your head round and the first months before and after diagnosis are the worst. So little steps, and above all be kind to yourself and allow yourself to have bad days, and stay in bed days, and all I'm going to do is eat chocolate days if that's what you need to get through this bit. It will get better! Polly

  • Hi Maddie

    Great that you have joined our group. I too felt the same when 1St diagnosed last March. Have progress quickly thru medications, at present on Methotrexate injections. Tried tablets 1St but tolerated them for 3 months. So now on methoject that I inject once a week.

    Hands still painful and swollen. So waiting to start. New drug anti tnf's.

    Methotrexateis the drug of choice to treat RA. it does have side effect but they don't affect everyone. Best of luck when you take them. The normal process is to monitor your blood results 2 weekly, so the doctors/rheumy team will see how effective the drugs are working.

    You are starting on a low dose so any side effect will be minimal then, the doctors will increase them, as to how effective the drugs are.

    If you are distress or worried you can post a question or a blog and you will be sure to get the support you are looking for.

    Best wishes

    Carole

  • WOW! I keep gushing but thank you all so much...I wished I'd found this site earlier in the week.

    Tilda...that is brilliant I will try it...but with some people there will be just no getting through to...we all know the ones...the biggest complainers about every little thing! ;)

    Maddie xx

  • Hi there Maddie, I agree with Tilda. You will come across many people who have little understanding and even less knowledge of the disease. You will soon find a way to tell them. How this disease affects you and those around you.

    People expect you to get fit and be back to normal after a few tablets or injections.

    I've been told at work... well so and so has it and they are at work.. I now reply well I'm glad their condition is under control, but they are not me. And I suggest you should not compare me with someone else. end of conversation. Or try living with the exhaustion and fatigue. Then you might have an idea.. good friends will understand. Shallow minded insular people won't. So you won't be loosing much in the way of friendships. I've lost a few, But gained many more on this site in the last 9 months.

    Sorry for the lecture...:-) :-)

    Really lovely people on here....

    Carole

  • Thank you Carole...that is such good advice and I do certainly have a feeling that a few friendships could possibly go! But hey ho that might be a good thing...i feel that I'm changing but as long as I can keep doing the things I enjoy the most is what matters at the mo.

    My Employers have known about my situation and have been supportive offering to get me special equipment etc...don't know how they will be if I have to take time off sick though but hopefully it won't come to that!!!

    I'm going to try and read up on all your blogs this weekend so I can get to know you all a bit better

    Thanks

    Maddie xx

  • Oh yes we all know about them Maddie! I think one of the best things RA has done for me has been to help me sort out the wheat from the chaff in terms of real friendships and fair weather ones. Mind you even a close friend went to her doctor convinced she had RA although I told her I thought it was probably osteoarthritis because it was her hips and her thumb joint that was affected. She told her doc her mum had RA and it turned out that her mum had OA - and she moaned to me about how dismissive her doctor was. She's known about me since I was diagnosed but when I described the kind of pain RA is compared to OA (I have bit of OA too) she write back saying she was really shocked - had no idea how bad RA was. So sometimes you think you've got through but really not!

    Hang in there MTX is life changing for many, myself included, although it can take a while - for me 3-6 months so don't expect too much straight away. Good luck with your 3 tablets. I've found with or after food is best. Xxx

  • Hi Maddie, I can understand how you are feeling, I was only diagnosed three weeks ago, and into 2nd week of taking MTX & Hydrochoroquine & Folic Acid. I get a little nausea either !st day or day after, my biggest thing is the exhaustion, not sure if that's down to the meds or the disease.

    Like you I'd never really heard about Ra or know anyone with it, & coming away from the Consultants with a diagnosis, then looking up about it & reading all the assosciated problems & side effects I must admit really frightened me. But I want the pain to stop, my hands to stop hurting & work again. The pins & needles to go away!

    I found this site, & Thank You to everyone here for their help, support & advice. I I have a problem or question I can usually find it here. I feel among friends, who understand how we are feeling & what we are going through.

    I have my first of my two week blood tests on Tuesday after starting my treatment, Which im worrying about. What will they show?

    Anyway, welcome Maddie.

    Rie xx

  • Hi Rie

    Thank you for your reply and advice.

    We are at a similar stage and I hope everything goes well with your blood tests next week.

    I don't know how you felt when you went to see the Consultant but did you have a feeling that you just knew you were going to be diagnosed with RA?

    My GP had tried telling me it was a cyst or an infection from a insect bite, I even thought my swollen hand was from my huge dog pulling on her lead!!! But deep down I think I knew it wasn't.

    Anyway good luck, I'm going to read the blogs to get to know you all better.

    Maddie xx

  • Thanks Tilda, I will take them after breakfast tomorrow.

    I can identify with the story about your friend...I have a very close friend who I know means well generally but she's very one sided, I've helped her through many stressful periods in her life recently..anyway I told her about the RA expecting some support maybe a bit of sympathy but NO she showed me her thumbs and said " I get some arthritis in these and I'm supposed to take pills but I just get on with it" I'm not dismissing her arthritis in anyway but she just didn't have a clue or want to...Mmmm some people!!!

    Anyway thanks for your support tonight and I'm going to read the blogs to get to know you all better.

    Maddie xx

  • I'm going to gush again.... But thanks to everyone again who replied this evening, I've gone from feeling totally isolated to feeling like YES I've found people who understand what I'm going through.

    Even though I realise we will never recover I wish you all the very best in the fight against our autoimmune diseases.

    Maddie xx

  • Maddie

    You are sounding more positive already.

    Good for you.

    Take care

    Jo

    Xxxx

  • Hi Maddie, welcome from me too. I'm sorry that you have just been diagnosed with RA, but I'm sure there is a bit of relief mixed in with the initial shock, because finally you have some answers and you are being treated.

    Usually the helpline is manned by Clinical Nurses, (mine are very helpfull and understanding,) and they will answer any concerns you have.

    As others have already said, Methotrexate or MTX for short, is a very good drug which RA sufferers have been treated with for many years.

    So, just take those tablets over the weekend,with or after food as Tilda suggested, I find that's the best time to take them too, and you'll be on the road to some relief.

    Be kind to yourself and take one day at a time while you get used to your new situation and you will be alright. You are in good company here and you'll find yourself having a good laugh at times too. June xx

  • Welcome to the site too. it is huge learning curve and a rough ride to start with.. things can and do get more easy with time.

    I hope you get sorted quickly after your wait.. mtx suits most people and gives good results 7.5mg is the normal startingt dose x

    Ali x

  • Welcome Maddie!

    I just want to echo everything everyone else here has said. I'm fairly new here myself but these guys are fantastic at helping to pick you up when you're down and of course everyone here also knows and understands what you're going through and your fears and frustrations.

    I also totally agree with Tilda in dropping the 'Arthritis' word and calling it Rheumatoid Autoimmune Disease. It shuts a lot of 'Nellie Know-alls' up :-)

    You'll never be alone here, it's one for all and all for one!

    All the best

    JoJo xx

  • Welcome Maddie sorry i'm a bit late ! Went to bed early . hope your Mtx went ok this morn!!! i agree with you its all very scary in the beginning but it dose get better hang in there nice to have meet you xx

  • Hello Everyone

    Thank you for your replies.

    I took my FA last night and about an hour later felt sooo sick, I was up and down in the night until I finally was ill, then managed to sleep!!

    Has anyone else experienced this with FA I thought the MTX was supposed to cause the side effects and that the FA was there to help???!! I've googled it and it does say it can make you sick but I would really appreciate any advice on this and if anyone else has had this with FA.....I don't normally ever get sickness bugs.

    Many Thanks

    Maddie xx

    Ps I haven't taken the MTX yet but can't put it off much longer :) x

  • Hi Maddie sorry for late reply. (am on ski holiday) yes I felt like that with folic at start - told go who said it couldn't be as v rare - but definitely was as I kept diary of symptoms. It lasted about a month then stopped. Found ginger quite useful. Keep persevering with it but mane mention to go or rheumy team. Best of luck with mtx I've been taking it since may with hardly any side effects and now feel so well have been able to ski again!

    caroline

  • Sorry - gp not go! Phone playing up!

  • Hi Cazh

    Thanks for your reply. That's good advice about keeping a diary for the FA I will start doing that as about an hour after taking my first 5mg I felt so sick, but then had so many thoughts and emotions going on in my head it could have been coincidental...will try it again today :)

    That's so inspiring to hear that you are able to ski again after taking MTX , I hope you continue to feel so well and good luck with your treatment also.

    Thanks again and what a positive message to wake up to on a freezing Sunday morning!

    Maddie xxx

  • Good luck with MTX i can't say about sickness i take Sulphasalazine . as i have had hep b and can;t have MTX .Not so sure if thats good a thing or not take good care of yourself xx

  • Maddox, I think that sickness could just have been coincidence, or maybe stressed out? Folic acid rarely causes any problems (although why are you taking it before the MTX, rather than 24 hours after?...). And really try not to worry about the MTX. Pollyx

  • Hi Polly

    Thanks for reply....yes could have been a coincidence I suppose because I felt fine till I took it maybe getting worked up....maybe a need to be a "grown up" and just take the bl@@dy things!! Still I'm very new to this so I AM going to give myself some TLC.

    I'm taking the FA everyday like I've been TDA to by my consultant he's even told me to take it on the day I take the MTX.

    Maddie

  • hi maddie i take fa evday except meth day told doc this he was astonished and said most peeps only take once a week so drop the day before as well which i have done dont feel ant different but will confirm with my app with rhuemy nurse on wednesday first app looking forward to it you must need it maddie or they wouldnt tell you take it ev day.

  • TLC is good..... And essential part of coping with RA. But do just check with consultant re taking folic 7 days rather than 6 - did they give you phone number for rheumy nurses you could call? Everyone's different, and reacts a bit differently but everyone I've "known" with RA takes 5 or 10mg of folic acid between 1 and 6 days a week & not sure I've heard of anyone taking it 7 days. Tho' may not make much difference so don't stress about it if that's what they've told you. Px

    (iPad prefers Maddox to Maddie....)

  • Thanks for reply.

    No he defitnetly said take it 7 days a week, he did say many people are advised not to take it on the day you take your MTX but he said it's ok....saying that I'm off now to check! I was also supposed to be given a prescription for 4 weeks pills also which would equal 12 pills, I've been given 80 by the pharmacist.

    I don't have a number or anything yet they are sending it in the post and writing to my GP as I said earlier I was packed off with 2 leaflets, a prescription, you've got RA and see you in 3 months, a letter wiil be in the post.

    I know NOTHING about it but I'm not silly and I trying my best to cope and find out all I can :)

    Take me about Typo's I'm typing on my iPhone not easy when you have a hand like "shrek"

    Maddie xx

  • The folic is to counteract some of the side effects of MTX. As far as I understand it most people are advised to avoid MTX day because it might stop the MTX from being as effective otherwise but you should check with your GP perhaps and when you have a rheumy nurse it's a good idea to double check everything again. The most important thing is to get your dose of MTX right and that really has to be only once a week or it's dangerous! The folic is just a mineral and you can't O/D on it - the excess (not needed) is just flushed out so I really wouldn't worry unduly. Tilda x

  • you on low dose of meths then maddie 3 per dose is only 4.5 mg

  • Poor you! We've all experienced that despair & panic. Try to release that tension & get as much info & support as you can. Loads of really good info available from NRAS and support here from those who really know what it's like. Unfortunately, it takes time for the meds to work & to find the right treatment for you.

    RA is a very difficult condition to understand & live with but you'll learn to cope & to overcome. Good luck x

  • I have checked my pills, Folic Acid says 30 pills 5mg to be taken DAILY and I've been given 90 MTX should be 30 days worth, they have given me 30 days worth at 3 pills a day!!!!!!! Oops no wonder I'm bewildered :)

  • Thank you Selina, I'm going to ring my GP on Monday.

    Nice to meet you

    Maddie xx

  • MTX would probably kill you if you took 3 pills per day - that's terrible! Tilda x

  • So 90 pills at 3 per week should last you for 30 weeks but in all likelihood your dosage may be raised before that! Tilda x

  • I have just contacted the pharmacy where I got my pills and yep a mistake has been made...I have too many pills!! I'm going to take them back the poor girl was soooo apologetic and not sure if she will get in trouble, the box was labeled correctly just soooo many of them!

  • Welcome to this wonderful site, i hope you find that everyone is so support and friendly

    Shirley xx

  • Hi Shirley

    Thank you for the warm welcome and yes everyone has been so supportive and friendly especially as I don't have a helpline number only diagnosed on 19/2.

    Have a good weekend :)

    Maddie xx

  • Hang in there Maddie! It will get better. Promise! ;-) It is hard to accept the diagnosis of RA but for me it was a relief also, back in 1995 after a year of not testing positive for RA or visible signs. Thought I was going mad. Then got visible evidence. I agree wholeheartedly, all the info is indeed overwhelming and scary. Like anything, we have to learn a bit at a time. No one can be expected to suddenly become an expert .. even if it is their own health condition. I am fairly new here and about to take a biologic/anti TNF (sorry more jargon .. Forget that! ... Just another type of med) after agonising over what to do and still scared. Guess we all are at first. These guys here are much more established on the site as I only came here recently but I have had RA for 18 years with ups and downs and I do remember well how it was at first and you are allowed to be scared at first but will soon see when MTX works that you feel much much better. I agree with Summer and will say MTX works very well for most people and with some really good results. Don't be scared of it. I took it for quite some time without a problem. I think the tiredness is a mixture of meds and RA. My GP used to say I had "unprovoked exhaustion" which always sounded rather dramatic from him ;-) but what he really meant was .... I could get tired doing nothing! I think we all feel like that a lot of the time.

    Take care and better days very soon for you!

    Neon kitty x

  • Hi Neon Kitty....great name :)

    Thank you so much for your kind words, everyone whose replied has been brilliant and really lifted me.....you all sound so positive which is comforting as you must have gone through the same emotions and frustrations that I am right now...and you probably still do at times.

    I wish you all the very best with your new meds too.

    Maddie xx

  • Hi Maddie

    Like yourself I am newly diagnosed 14/2 and very very confused by it all, I have had pernicious anemia for 20 odd years and always thought that all my symptoms were related to this. It was not until a new gp at my practice sent me for blood tests and the results included an esr level of 37 that I was referred to rhuematology. I have been seen by a lovely lady consultant who wants to start my treatment immediately I was given an intramuscular Depomedrone injection which helped brianefly I am now awaiting a telephone call to attend a 5 day treatment package which includes Hydrotherapy, Hand Therapy (wax), Gym exercises and medication counseling. I was wondering if anyone else had, had this treatment package and if it helped?. I have alot of painful areas and recently had a nerve block in my left side and also steroid injections for trigger thumb/finger. Im sorry if Im a little vague, but I am uncertain in alot of areas and could really do with advice on any of the above, xoxo

  • hi i have just started thsi at my hospital i have hand wax is lovely light physio no pressure,its good xx

  • Hi Rubels

    Thank you for your reply.

    Sorry to hear also that you've also been recently diagnosed, a bit like you it was a locum GP at my practice, that saw my bloods were positive and sent me for a scan where it got picked up I had joint damage, I don't know for sure but if it wasn't for her I could still be in limbo, but at least I know now.

    My best wishes for everything I hope your treatment works.

    Maddie xxx

  • Thank you Maddie xx. I will start in about a month, after the usual protocol of tests and meeting with the nurse next week. My then Rheumy nurse at time of diagnosis said it was very hard for me as I was an athlete but it is hard for anyone to be honest as our lives have to change and adapt but we do it! We are strong. ;-)

    Rubels - Good luck to you too. Like your hospital, mine was very good at putting together a package to help relief pain and help awareness etc. The wax hand baths were fantastic. They make your hands look soooo much younger too! Feel fab! Hydro very good - you can do so much in the pool with water supporting the joints exercise wise. Hope you enjoy that. The Rheumy even sent me for a course of counselling sessions as she said I had so much frustration about how I got RA. (I believe a mega stressful job caused it. I had to exorcise that if it makes sense!) Of course speaking to someone impartial helped so much. I didn't want anyone to agree with me and say there there. Just tell someone how I felt and be glad to know I wasn't losing my marbles!!!! ;-)

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