Newly diagnosed with RA - very scared and confused

Hi,

I'm new to this forum and have never really used a forum but I am looking for a community who can help and support me on this journey.

I was diagnosed with RA only last week and it's come as a shock. The doctor immediately thrust medication at me but I told them I would like some time to think things over and let it sink in.

I am pretty scared at the prospect of taking medication for the rest of my life, and being only 33, how this condition and the drugs will affect my future.

The doctors are prescribing Methotrexate and Hydroxychloroquine, does anyone else take this combination of drugs?

Methotrexate sounds horrendous!

Any advice or support is greatly appreciated as I don't know anyone else going through the same thing I am.

Thanks

Sabrina

106 Replies

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  • Hi Beautifulmovement, what I lovely name. Welcome. I am reletively newly diagnosed too and new to the site and am still trying to get my head around having RA/RD and fibro but I remember the day I got told and was prescribed these drugs I went sort of numb. It was like I was looking in at someone else. Bewildered and confused. I was diagnosed in March 2014 and dont feel like I got much info from rheumatology at first, just drugs pushed into my hands and a leaflet on the side effects of the drug I was given. I was given Sulfasalazine which gave me a cough so a month later they tried Methotrexate which has given me throat problem so I have now been given Hydroxycholiquine (I havent started this yet because Im on penicillin). Did they give you a contact if you feel you have problems? I didnt get any info at first and went back to rheumy a couple of days later to pick up as many leaflets as I could. Thats when I found there was a helpline. I didnt find this site until June 2014 and I have learnt more here than any doctor has told me. hope you get what you need to feel better. Gentle hugs Joolz.x

  • Hi Flossyjoolz

    Thanks for replying, I was worried no-one would respond but everyone seems lovely.

    I have yet to take MTX. I asked for a thinking period and they have given me 2 weeks to mull it over. Instantly I thought I am not taking any medication, but the more I look into RA and what it means as a disease the more it makes sense to start medication sooner rather than later.

    They have said that when I start I will have access to the department, but I feel that these forums are much better at reassuring me as I like to talk to people who have experience of RA and who are going through the same thing I am.

    Trying to digest all the info I can so that I'm prepared, and trying not to freak myself out with all the bad side effects of the medication!

    x

  • Hi. Welcome to this forum and I'm sorry to hear your diagnosis. It is a shock and takes a bit of getting your head around I think.

    Now here's the but.... But we are lucky that there are medications that can help these days!!

    When u read websites people generally ask questions when they have a worry or problem so don't worry that this is happening. I like to vent on here and rant when I am in the mood. But most days I cope with my medication and support from people here and at home. Loads of people do extremely well on mtx and don't have problems. It and hydroxy are considered gold star treatment and that why the protocols normally advise using it first.

    Have you read the newly diagnosed section on the nras website nras.org.uk it's very informative and there is a helpline if you want yo chat to someone. I did.... A lot! .. At the beginning and it really helped.

    I too worried about my future but my advice if you don't mind me saying is to take a deep breath, get as much information as you can, take the medication and hope that the drugs kick in quickly in the next couple of months. If they don't suit or work they can be changed or adapted.

    But for now, rest up as I bet you feel exhausted and take the meds as they will reduce your inflammation thus the pain. Take regular pain relief as prescribed and if it's not working go to the gp, they are great for pain meds. And I find hot packs or cold packs soothing. Keep chatting on here with any questions and I hope you get lots of answers . Thinking of you xxx

  • Hi Allanah

    Thanks for replying to me.

    I emailed NRAS and they have told me to give them a call so I will do that asap. I'm so glad I found this forum as I was feeling very alone. I'm glad to read stories that MTX has helped others, that is reassuring.

    I really do feel exhausted!! I am in work today and have such a foggy head with so much whirling around, but ruminating in my feelings doesn't help either so I'm on here reaching out to others. Thanks so much for your kind and encouraging words, it really has helped.

    x

  • I'm in a similar situation and I feel the same. I'm spiraling downwards, but reaching out on here, reading what other people are going through to try and put things into perspective. I'm glad you've found support here x

  • Hi ShellyWelly,

    I'm sorry to hear you're not feeling great at the moment. There is a definite link between physical health affecting mental health. It's hard to balance them both and know what to focus on first. Give yourself permission to feel what you do, just don't stay there. And if you feel like you might stay in this place, speak to your GP or someone you trust to help you. We're all here for you.

    x

  • Welcome to youxx. I find the site very comforting when i need it. All drugs suit some & not others. Just try everything they offer you & remember you have alot of friends on here that are always here if you need us. Good Luck xx Alison

  • Hi Alibromo

    Thanks so much for your reply. It's really comforting and reassuring to know that I have found a group of people who understand what I'm going through.

    x

  • indeed we understand what its like. I couldnt believe the brain fog with it!! But reassuringly as the inflammation reduced the brain fog reduced although .... what was i saying!

    do call NRAS they are lovely and have lots of support groups too, ask them if theres one in your area. I have made lots of friends that way. You can also ask for a telephone volunteer. I got a lovely lady and we remain friends still!! so food luck on your journey and dont feel alone, theres lots of us in the same boat...unfortunately and good luck with the treatment xx

  • I didn't even realise that fog and fatigue were due to arthritis!

    My constant moans of 'I'm tired' I thought were down to a hectic lifestyle, but even stripping all that away I'm still tired. Thanks for the support, it's a great comfort.

    x

  • Hi, if you can, when you feel total fatigue, is try to rest or sleep. Please don't keep fighting it ( I once nearly fell asleep when having my eyes tested!!!). Sometimes just ten minutes rest may be all you need - even if it is 3 or 4 times a day.

    Look after your teeth, tell the dentist if you are on MTX.

    As to the fog - it will clear!!!

    I know it is scary but this site is great as is NRAS. Thinking of you,

    Jan

  • What happens to your teeth?!

    I'm so glad I can attribute the sleepiness and fog to something. Thanks for the advice about resting, I'm always doing something and struggle to sit still but I'm going to have to learn.x

  • Welcome to the site Beautifulmovement.

    I was diagnosed with RA in 1987, when I was 36, with 5 young children to look after. There was nothing like this forum available and I had to struggle through it alone. I took non steroidal anti-inflammatories, which didn't really help, but when my GP referred me to a rheumatologist who prescribed Sulphasalazine - WOW, what a difference. I could walk again, I could get up and downstairs without too much difficulty, and my bunch of banana hands became normal.

    I was eventually put on Methotrexate tablets but as the dose increased I became nauseous and had blackouts, so my rheumy put me on injections - HOORAY, no more nausea and no more blackouts. It was like opening a door to a new world. I can understand your reticence to agree to these drugs, but if you're like I was, you won't be able to manage without them. And come here to rant, ask questions, whatever you need. Also, the NRAS website has lots of information about our disease that will help you get through these early stages. Good luck xx

  • Hi Poemsgalore1

    Thanks for replying. I am scared of taking MTX as I want to start a family in about 3 years but I know you shouldn't get pregnant on this medication. Just worried it will affect my reproductive system and mess my chances up of having children.

    I think I will request an injection of MTX if I go with that as it sounds easier on the system!

    x

  • I'm 35, diagnosed at 16. I just stopped taking MTX a few months ahead of trying for my children and it certainly didn't affect fertility given how quickly I conceived both times! If you ever want to chat with someone at the same stage in life, do contact me. The people here are brilliant x

  • Hiya & welcome from me too! Love you name, good choice, we'll certainly recognise you when posting!

    I joined this wonderful happy band for similar reasons though differ in that I've had RD for 6 years & only when finding difficulty with my treatment did I join but so pleased I did & hope you find it as helpful & supportive as I have. It helps to get different viewpoints from those who have the same issues whether you know anyone with it or not.

    My first DMARD was HCQ but that didn't control me well enough so MTX was added. Again not brill results so HCQ was stopped & have done well with MTX as my only DMARD. Please be assured that your Rheumy will have considered carefully which combination of meds would suit your needs to avoid unnecessary & unwanted future problems. Generally MTX is the first DMARD tried to get the RD under control & think my Consultant was somewhat in the minority with his first choice of HCQ alone & in fact it proved of less use for my case but I accepted & agreed to his softly softly introduction to the necessary but, it has to be said, strong drugs.

    You're not alone in your fears, it is a facer early days but I've found with my mix of meds it's now become the norm to keep me upright lol!!! If you're concerned about side effects those who take MTX are prescribed folic acid to reduce any you may have & tablets are usually prescribed first but if you give them enough time to see & continue with any problems your Rheumy should be able to offer you injections. This is how I take it & am far better & happier with them. You're well monitored whilst taking it to see how you're reacting & any adverse effects are quickly caught. I've only experienced this once when it was considered I'd benefit from an increase & upped from 15mg to 20mg but was quickly dropped back down to 15mg & was fine back at that dose.

    Hope you find answers to you question Sabrina & reach the decision which is right for you, the one you're comfortable with.

  • Hi nomoreheels,

    I'm assuming your name has come from you having to give up high heels, if so, I feel your anguish. I have tons of beautiful heels I can no longer wear, and Nike AirMax are my new best friends! At least I might make myself rich from selling them all on eBay!

    Going on MTX and Hydroxy scares me witless, only because my RA has been described as 'mild', which is good thing as they've caught it early, but I worry about taking a strong drug for something so mild. Although it's showing predominantly in my hands and feet, I have flare ups in my shoulders and hips, wrists and my knees.

    I am have also agreed to be part of a study/research into early-onset arthritis. Just thought if I can help others through my own experience then it's no time wasted.

    It has helped no end just finding this forum today as last night I was in bits with trying to process it all.

    Thanks for your kind words and advice. It's much appreciated and a great comfort.

    x

  • You're correct in your thinking! It was a real problem for me as I just loved shoe shopping & have still got some of my faves hoping maybe...... some day! Now focussed that yearning into handbags which is just as bad as my h will agree!! Comfy shoes, if you find some which suit your needs, are a Godsend aren't they though?

    Be assured, as I said if your Rheumy thought you would be better on simpler anti inflammatories & pain meds he wouldn't even suggest what he has even though your RD has been considered mild. He's thinking of your future & hoping to knock it on the head quickly to give you the best chance possible of less damage in the future & feel sure your age is a consideration in his decision.

    It is true there are less harsh drugs when considering a family but they're generally not as effective & if you've discussed your future wishes regarding this again it's likely that is why he's taking this route now. You can come off it when you wish to start trying & change to other less problematic meds with regard to getting pregnant nearer the time as MTX does obviously leave the system but will take a little while to do so before trying so this would need to be considered. If you have a frank discussion about your fears with him at your next appointment I'm sure he'll go through the options with you & your partner.

    I'm pleased you're able & willing to participate in a study as that's one of the ways to progress forward with greater understanding of the disease so well done you for accepting the offer. I do the same when such things relative to my experience is offered & have done since first diagnosed. When participating in them when I lived abroad I received feedback a while later which is somewhat rewarding but as yet heard nothing of the ones I've contributed to in the UK, but that may be just not done in those I've been involved in here. I hope they've helped in some way nevertheless.

    Just pop on again if you have any more concerns. We can only try & help if we have experiences of your concerns or any other way wemay be able to help as only people having the same troubles can. x

  • Where do you buy your shoes from? I've found that Clarkes is pretty good but I haven't tried anywhere else.

    I don't think they do get back to you in the UK when you agree to participate in medical research. They just want my blood and for me to fill out a questionnaire!

    I have my rheumy appointment next Wednesday so will voice my concerns then.

    Thanks again. X

    P.s. I'm a bag girl, especially vintage bags....

  • I've gone through them all Sabrina in an attempt to walk somewhat normally - Clarkes, Hotter, Scholl et al & given them all away or sold them on eBay but Fly Flots are the ones I live in. I have a pair of genuine Crocs toe thongs for swimming (the copies aren't soft enough) & can just about cope with them for short periods. Fly Flots are the only ones with squishy enough soles as the soles of my feet are so tender & need plenty of "give" as I walk. The majority of them also adjust with velcro or buckles so if my feet swell I can be sure I won't go over on them. I also need slight height as I'm unable to have my feet flat as the ball of my foot won't allow it & choose the small wedges. If you take a look at pavers.co.uk/women/shop-by-... it'll give you an idea though I have bought quite a lot off eBay when they pop up as new not used. In fact have my eye on a pair on there at the mo! Come winter Pavers also do more shoes & ankle & knee length boots. I lived in my ankle boots last winter. I even have to avoid pebbly pavements & the edges of zebra crossings with the bobbly pavements!

    Ok, that would explain it then about research feedback. In Spain it was different & think they thought it best to keep you in the link as often there was follow up, I guess it's if the contribution was helpful.

    Hope you get the help & info you need on Wednesday.

    With you on vintage bags, especially if I know I'm getting a bargain as can happen periodically, though that's less often nowadays with more people in the know!! x

  • Ah those knobbly bits at the crossings are so painful!! I always have to stand right up against the traffic light so I don't have to walk on those things otherwise it looks like I'm trying to sprint across hot coals.

    Thanks for the website, I always struggle in winter with boots so this will come in helpful.

    I will let you know how it goes on Wednesday.

    x

  • No probs. Hope you find some to suit you whichever make & wherever their from. It's so necessary both for the health of your feet & comfort.

    Hope you get the info you need on Wednesday & can make your decision from that & yes, do let us know. x

  • Welcome aand we feel your pain, it's no nice realising the enormity if having RD, this place has been a godsend, everyone is helpfull and understanding, I too worried about the drugs and the question of why do I need to take something so strong?, I am now on what I suppose is quad therapy, Hydroxy, Sulph, Mtx and Enbril (biologic), and coping fine. Whats good for one can be terrible for another so don't worry too much about meds, as was said above try them all until you get the combo that works for you, I hooe you are feeling better soon .

  • Thanks IainM, I do feel slightly better knowing that there are those out there taking these medications and feeling better for it. I think you're right, it's all trial and error until I find the best combo. Thanks for replying. I really appreciate it.x

  • I believe you can have the treatment now and stop a while before trying for a family . A lot of people actually feel better with their RA when pregnant but do check the a facts out with your rheumatologist, I just think I can remember others saying it on here xx

  • Hi Allanah

    I have also read the same thing. I plan to start a family in the next few years so would really be on MTX for a year and a half. I will definitely need to speak to my rheumatologist about it.x

  • Yes do, but a year and a half is a long time so the treatment will help prevent any damage that could potentially occur in that time. then I don't know how long it takes to clear out of your system before u try .. Officially!! Good luck hope the Rheumy chat goes well and at least you have plenty of planning time xx

  • Thanks Allanah.

  • Hello Beautifulmovement - a great name I agree. It is harder than anyone else who doesn't have a long term condition can appreciate, to be told that you have RA (or RD as lots of us are now calling it to take the emphasis away from the arthritis). I hope this forum will be as much of a refuge and a support as it was to me in the early days when I first came here over three years ago, still undiagnosed and terrified. My experience of drugs has not been great because I am super allergic but that said Methotrexate has kicked my RD into the long grass several times now and many people find it a miraculous drug. Take care and keep coming here - it helps relieve the shock of a new diagnosis and the ongoing support is great too. Twitchy x

  • Hi Twitchytoes, love the name!

    My dad has RA and PA, he is off the scale bad and seeing him freaks me out. I think 'I don't want to be like that', but he didn't catch his early enough and now is on all kinds of treatment.

    Speaking to people on here has really helped me accept that I will have to take medication, and that it's the best route for me, and I only found this group yesterday! I feel like I've found a group of friends I didn't know existed!

    x

  • Hello and welcome. I was diagnosed at a similar age - I was 32 - four years ago (August 2010). It was a huge shock and it felt as if it was happening to someone else if that makes sense. It is scary contemplating taking the medication and I totally understand taking time to consider it for several weeks first. I was the same. I wish someone had told me at the start that the risks of uncontrolled RD/RA were worse than being on the drugs, and that the right drug could make a real difference. That was a breakthrough and meant I started to see it (medication) as something positive that would give me my life back. Also the prognosis nowadays for RD is much better than in the old days before all these drugs were available and drug-induced remission is also a possibility. Any time you have questions or worries don't hesitate to post on here as everyone is really supportive x

  • Hi Francherry

    Yes I am completely getting that, like it's happening to someone else. It's also made me really emotional!

    I am beginning to understand that taking medication is the way forward for my RD. It's still scary but I'm trying to accept that this is the journey I will go on. However, I haven't started treatment yet so we will see how I feel once I start that.

    Thanks for the support, it means alot.x

  • Hello again, I think it's a normal reaction to feel emotional about it and I've found it helpful to talk to friends & family (as well as health professionals) about the emotional side of RD as well as the physical side. Also I've had talking therapy (CBT) and have done mindfulness training which were really helpful. Good luck with starting your treatment. x

  • Hi Francherry

    I am really interested in mindfulness training actually. I need to look into that. I have done alot of CBT, so will definitely use that when I'm feeling low. Thanks for the recommendations.x

  • Welcome and a hug, I hope you find this site as supportive as I have, it has been the place I have found information and reassurance when I need it. I am newly diagnosed and am 3 weeks into taking Methotrexate and Hydroxychloroquine and up to now am doing okay and hoping this will continue. Like you I was so apprehensive to start with but now am counting down the weeks to when I might start to feel some difference. Hope it goes well for you x

  • Hi Iainee

    Thanks for the reply. I hope you start feeling some relief soon and that any side effects are minimal. We're you put on these drugs straight away??

    It comes as a shock to know I will have to take medication but I'm learning the benefits of taking them through reading the experience of others.

    It's great to find such a lovely community of people too.

    x

  • Hi again, yes I was only diagnosed officially around 8 weeks ago so it has been very quick. It has been a roller coaster of emotions ever since. My symptoms weren't too bad to start with but really rapidly I changed from being very active, working full time and walking most weekends to where I am now which is fighting pain, struggling to walk and coming to terms with everything. I am now on morphine patches and pain killers and sometimes think I am dreaming it all. After visiting this site though I realised that the quicker you start the treatment the better so when things get me down I try to think I am now a third of the way into hopefully feeling better. I do hope this will help, if you start the treatment let us know. I got a lot of advice here on things that can help i.e. reduced caffeine, drinking lots of water, eating well and I sip ginger tea during the day and at night. xx

  • Thanks lainee. I am actually going to see a nutritionist next week to help with my journey on medication. I do love caffeine so that will be the hardest to cut back on but needs must.

    Did your symptoms get worse after starting treatment or before?

    I am quickly realising that medication will help me in the long run, so trying to now shift my frame of mind to a positive one.x

  • Good Morning, nice to hear from you. How are you today? I am working at home today with my knees propped up. I don't know if coming off caffeine has helped or not to be honest so don't take my word for it! I just know I haven't been sick so far so going to continue regardless. My symptoms just continued to get worse and I am afraid at the moment are still doing so but it is early days and I like you am realising a lot of things, one being there is no quick fix! Its hard to be positive sometimes when your world is changing but I think it helps. I am interested how you get on with the nutritionist as I am a great believer in how food can help. I have started doing juices i.e. carrot apple and ginger and eating nuts and seeds and plenty of fruit and veg. It makes you feel better to think you are helping yourself. I am also having aromatherapy baths everyday even though it is getting harder to get in and out! Let us know how it goes with nutritionist. This site is great isn't it I think i would have been lost without it. xx

  • My feet and fingers are hurting today but other than that I'm in good spirits.

    I think there have been links to caffeine and inflammation, so you're probably right to stay away especially if you think it helps you. I hope you find a combination of medication soon and that you start to feel better. It's definitely a rollercoaster from what I can gather.

    I am also a great believer in good food for the body. It goes into your system everyday so it has to have an effect on your overall being. I will definitely let you know what they say.

    I like the sound of aromatherapy baths, I will give those a try, even just for the relaxation it might bring!

    I would also feel alone and lost without this site. I'm so glad I found it and it found me and I found you. :)

    x

  • Ah Ditto! I have this great book "Teach Yourself Aromatherapy" by Denise Whichello Brown. I have had it for years but have been using it a lot lately. It tells you what each oil is good for and if they are dangerous to mix with certain things. They have some good tips for gently massing fingers and toes to relieve pain and stiffness and it does help. Also I now really love the Pukka range of teas. They have really good combinations for example 3 cinnamon, 3 Ginger and 3 Mint which are my farourites. I am getting quite into them now and if they go cold they are still nice!!

  • I will definitely give that book a go. I love essential oils but never really know what to do with them apart from plop them in water.

    I love a good herbal tea, I just need caffeine to get me going in the mornings and during my afternoon slump, but I didn't know that RA causes fatigue so medication might help with the slumps.

    x

  • Hi just saying hello and hope you are doing okay. I am on week 5 now of the tablets and still feeling okay. Did you go to the Nutritionist ? Bye for now xxx

  • Hi lainee

    Glad to hear you are feeling ok and are doing ok on the tablets.

    I did see the nutritionist on tuesday and we have started a food elimination diet to check for food sensitivities. She said that she is seeing an increasing number of women my age being diagnosed with auto immune disease, so she's very clued up on this. Elimination diet is interesting, I am craving my morning coffee/tea, but am sticking with it for the greater good!

    I saw the Rheumy nurse yesterday to start me on the two tablets, but my lung capacity test came back low and so they have to delay it. I did tell them that I want to start a family in the next couple of years and so they may change it to Sulphasalazine. I see them again in a months time (after having more lung tests) so will see what happens then. They did give me a steroid injection which seems to have helped. I stood at the top of the stairs this morning expecting to have to limp down them but my knees were pain free! x

  • Morning, oh that is a shame about the lung tests, I hope you can start on them soon. I am really interested to see how you do with the nutritionist as I believe in some countries they don't have any RA so it must be down to something we do differently. I am so pleased your steroid injection is helping as i have just come back from having one so you have upped my mood. Take care and enjoy your mobility while it is good! xx

  • The nutritionist I work with talks alot about the chemical toxicity in our lives, from what we put on our faces and bodies, to the washing up liquid we use. Also, our food is just laced with such rubbish that it will have a negative effect on our systems. For myself, I just want to be in a better position health-wise before I start medication and I think this can help. I don't think it can cure me, I'm under no illusion about that, but I want to give my body the best fighting chance.

    Yea I plan to do star jumps and sprint running! ha! joking.

    Hope your steroid injection works well for you. x

  • welcome from me too , so sorry about your diagnosis , but you've come to the right place for support , we all know how you feel , I was diagnosed last sept. and still ploughing through the drugs to find the right one for me. no more advice to give you , it's all been said , great advice from everyone , but just to say I'm thinking of you , it's a lot to come to terms with , I don't think I have even now.

    ps. love shoes and bags too !! x

  • Hi julie_warwick

    I've been reading that acceptance is the hardest thing with RD, especially the medication and trial and error of it all. I hope you find the combination that works for you soon, as it sounds like such an emotional and physical rollercoaster. But let's focus on the beauty of shoes and bags...they make us happy! :)

  • thank you , yes , the emotional stuff is just as bad as the physical , don't be put off by my non response to drugs , most people will find the right drug eventually , just some take longer than others. ( just got some bargain shoes on ebay for my wedding, just hoping I can get my trotters in them , so difficult to find some special ones that look nice x )

  • My dad is in the same boat. He suffers with RA and PA and has tried a multitude of combination drugs. It's a process, but hopefully there is light at the end of the tunnel for you.

    Congratulations on getting married, I'd love to see the shoes! post a link if you can.

    x

  • We ought to start a high heels & handbags thread. Even somehow, don't quite know how but auction/sell our beloved but now unused heels & donate the money to NRAS. Any tech wizzes out there who know how we could go about it if anybody thinks it's a good idea???

  • good idea , still haven't quite given up hope of wearing them , you may have to come round and wrench them from me , bought a lovely pair in the deluded hope I could wear them , have been practicing round the house , no chance , flipping agony , hence the purchase of lower ones...

  • If you mean the ones for your wedding, don't give up on them, try them on the morning of your wedding. I'd been very poorly in hospital the 2 weeks leading up to mine (not RD) & I could have been punched by Ali on the day & I wouldn't have felt it! Adrenalin works...... or alternatively keep your anti inflammatory & pain relief topped up!! If all else fails just wear them for the ceremony & pics then change into something comfier. Nobody will give a damn & if they do tell em to toffee off - you have every right!! The dress & your happy face will be the focus of everyone's attention not your feet!!!

    When is the big day?

  • good idea , my daughter is thinking of customising some willies in case it is snowy / icy, don't want to fall on my backside.. it's not till dec. 20th but the time is going at an alarming rate x

  • oh my god , I meant wellies !!!! ha ha x

  • Well, they would raise eyebrows .......& take the emphasis off your comfies lol!!! My niece wore flip flops for hers - long flowing white dress & all, her little sis who was maid of honour did too though she had an excuse as she has RD & was pregnant at the time! She wanted to wear trainers with sparkly laces but gave in to pressure & compromised!

    Plenty of time then, though it will pass so quickly. x

  • there , you see this site has cheered you up already !.. customised willies... don't believe I wrote that

  • and now I've replied to the wrong lady , my brain is addled

  • hahaaha! Ah, that's so funny! don't worry, I'm sure nomoreheels doesn't mind you talking about customised willies. you've made my day! haha!

    x

  • Thought it odd. Happy bunny today, the sun's warming my bod in the garden. Know the feeling all too well!!

  • yes the sun's lovely , enjoy it x

  • Julie_Warwick that really made me chuckle!!!

  • We can auction them on ebay and you can choose to donate all proceeds to a charity. That's the only way I can think how, I'm definitely no tech whizz though so maybe there is a better idea. Would be awesome if we could get loads of people to a central place to sell all their shoes and get sponsored for it - like a shoeboot sale!

  • like the shoe boot idea but we would probably just buy each others and end up with more decorating the wardrobe !

  • Shoe swap! ha! x

  • Don't let me near any size 4s!!

  • oooo, we're the same size nomoreheels. there might be a fight over shoes! ha! :)

  • Ok - don't often come across someone with small sized feet! It was great years back on Spanish markets as sample shoes were always made in my size & had my pick of what would have otherwise have been very expensive in the shops. You'd have had a ball!! I remember one time in particular in Alicante & bought 6 pairs of absolute beauties for silly money, after haggling of course!!!!

  • 6 pairs! that's amazing! I would have gone crazy.

    I have these beautiful vintage boots I call my pocohontas boots that I can't wear anymore. I've found that since having RD my feet have grown. Is that normal??

  • Well..... I was like a kid in a sweetshop & just didn't know which to wear first lol!

    My feet haven't grown, in fact with my toes altering as they have I would say mine could be smaller, not that anyone would notice but me & certainly not enough to go down a size. Yours could be swelling maybe, internally I mean if you can't see any if it's just a half size difference of so? That may change when your meds start doing their job.

  • I get like that when I buy anything new to wear, I want to wear it all at the same time!

    I've gone up nearly a size, will be interesting to see if the meds help.x

  • I think it's the little girl in some of us that never quite goes away! I bet you poddled around in your mum's shoes like I did when I was a titchy too!?

    I think sometimes being less active & doing less exercise can make a difference in our body shape. I'm lucky & don't really need to weight watch but did used to do Rosemary Conley's gentle exercises to tone up (middle aged spread & thighs) & noticed not being able to do that for a while I have more to get hold of when injecting my MTX. So it works both ways for me!! Having said that I couldn't even pinch my tum this morning & my h had to do it for me whilst I injected hmpph!

  • Yep! and I loved those plastic shoes you got in the corner shops that made a loud clack-clack sound!

    Good news you don't need to weight watch, I could be more toned but I try not to pick on myself too much, I eat right most days and get exercise, so I've just got to keep it up.

    x

  • they haven't arrived yet , will post a pic for you when they do. wedding is at Christmas so they are red obviously ! x

  • ooo, i LOVE red! it's one of my favourite colours!!

  • I was diagnosed less than 1 year ago and the fatigue was worse than the pain I was experiencing. I educated myself on RA before adding the DMARDS (methotrexate & plaquenil). I am not one to take meds however, after understanding how DMARDs can aid in slowing down or possibly throw the Ra into remission I made the decision to start taking vs getting joint damage sooner. It was the right decision for me as I feel 100% better and able to enjoy my life. I want quality life for as long as possibly without my joints being damaged as I am very active. I just introduced aquafit a couple of times a week as highly recommended by my rheumo and it helps to keep your large muscles strong. Hope this helps but educate yourself and make an informed decision as it's your body and your life.

  • Hi Fcrooks

    I was also pretty active before RA became a problem. I used to do 10ks for charity and kickboxing, but I mainly miss dance. I am hoping that with effective medication I can go back to my passion.

    It's so reassuring to know that the combination that has worked for you is also the one my doctors have recommended to me. I know everyone reacts differently, but it does bring me hope.

    x

  • Focus on feeling better then when you feel better your body will tell you what you can & can't do. I just came back from a 7k walk & jog exercise and feels great. I also did a lot of running and being that my inflammation numbers are now very good I will increase my exercise as it makes me feel better when I am active and helps to keep you in a positive state of mind. I am going to do my best to be the warrior against RA in my body. I will figure this out.

  • I like the term warrior. I think I need to convert to be a warrior of health. I am quite healthy, but I know I need to take better care. I'm an emotional eater so you can imagine what this week has been like. Cake and coffee? yes please! Seeing a nutritionist next week though, so I'm sure that will whip me into shape.

    It's encouraging to know that you have started jogging again, I miss my jogs and walks. I used to walk for miles everyday and now it's just to painful for my feet. Can't wait until I can go back to being active.x

  • Sabrina,

    First - stop worrying. Worrying will not make you feel any better.

    The drugs are there to help you and the benefits far outway any side effects (I don't get any now after 15 doses) . Think of it this way - you have to eat food and water every day and take exercise so your body can stay healthy. The MTX is there to fix the problem you have and also keep your healthier. So its just as essential as food and water...Simples!

    Just think of the millions who take statins for the rest of their lives, or diabetics who take injections every day for the rest of their lives. Its common for us to not want to take drugs....but we are lucky we live in a society where these drugs are available to make our lives better.

    My wife is a Pharmacist and has many MTX patients ...and they all come in happy and have a chat.

    best wishes

    Paul

  • Paul4boats

    I love your no nonsense advice! Thank you.

    I guess right now I feel like I'm on a bit of a rollercoaster, I'm fine one minute then over-thinking things the next. I spoke to Beverley at NRAS and she rightly said that when people are feeling rubbish they post things online, but when they feel fine people generally don't feel the need to post. So all the scary stories are in the minority.

    So yes, you're totally right, as alot of the people who have come through have advised, for me to stop worrying, rest and relax and get all the info I need.

    Thanks for the reassurance. I know where to come when I need perspective.

    x

  • Hi beautifulmovement. I too was recently diagnosed and was also put on those two medicines plus steroids and Folic acid. I was already on alendronic acid plus others and thought OMG but decided to take the consultants advice. Am I glad as the excruciating pain has gone and am now walking more and basically feel that I'm more or less normal (some people might not agree with me). Obviously the decision must be yours but I am really pleased that I 'went for it'. Good luck with whatever you decide to do.

  • Thanks Paulineg.

    I'm glad to hear that the combination of medication has served you well. I was (and still am) nervous about taking them, but all the stories I've been getting of how it's helped others is really encouraging. In fact, I am looking forward to the day when I can do normal things again, like open bottles of water and go for long walks. Thanks for the vote of confidence.x

  • Well, I shall feel quite left out if I don't add my welcome! I'm at the other end of the spectrum age-wise (just 70) and really feel for young people who are diagnosed with this disease. Not that it's fun at any age! And I feel so grateful that I didn't get it when I was much younger, before Methotrexate and the other DMARDs were invented, let alone the Biologics which I am on. Do remember that the pharmaceutical companies and the medical team have to spell out even the tiniest risk, in order to cover themselves in this increasingly litigious society. You will find this a wonderfully supportive form. Make good use of it.

  • Thanks Jora.

    when I spoke to NRAS yesterday they did make a good point that people mostly vent when they are having a bad time so it makes it seem like medication is the worst thing on earth to take, yet all the replies I've had from my post have shown me the complete opposite. I'm under no illusion that it will be a journey of discovery, but I am trying to stay positive. I already feel like I've made friends here. :)

    x

  • It is generally the case with forums such as this that it's often used for those who are struggling, have unanswered questions or need to rant. I think most of us have done all three at some time but it's also an excellent place to share & care as we all have the same basic condition & can relate mostly how each other is feeling, unlike those who don't live with RD & in turn don't understand our sometimes complex problems. Your post has been a good example of the "help & support" you asked for in this, your first post. I think I'm right in saying this is the longest one I've come across since joining which just proves the point, you've received exactly what you needed!

    Unfortunately as we all differ in how we react to drugs & the ones necessary to help controlling us are no different so it is sometimes a case of needing to try a few before finding the one that suits us. Also, it can depend somewhat on how quickly we start on those drugs to help slow down any further damage. I was diagnosed & started on mine pretty quickly after experiencing symptoms, about 6 weeks in all, so I've been relatively lucky in comparison to some & with a fair wind you will be too!!

    Hope you're as good as you can expect to be today? x

  • I have no doubt that I will be back on here ranting and expressing my emotions, and it's so good to have found a safe place to do that.

    I am so grateful for all the responses and advice, it has really helped me. And it's great to connect with others who understand the plight of RD. It's such a roller coaster journey, and you're totally right, I recieved exactly what I needed. It means a lot that people have taken the time out to reply to me.

    The docs can definitely see damage in my feet and hands so the sooner I start meds the better. I'm glad I've taken the advice of people on here, than just listen to the horror stories (which are of course completely valid).

    I hope to establish some great friendships on here.x

  • I'm really pleased & have found it helpful too. I had been lurking in the background for a while & was getting frustrated as I was also needing another point of view when trying to make a decision about a new drug my Consultant wished to try me on at one particular time I was unable to access something that related to it as it was locked to non members. I tried to join but was living abroad at the time & don't fully know or understand why but it wouldn't allow me to. When I returned to the UK I looked for it again as I had another instance of a drug being suggested would help protect my bone density & was unsure about taking it but couldn't remember the site's domain name & did happen upon a good forum but didn't recognise it as the one I'd been on before. Little did I know that the layout had changed & it was the one I'd tried to join before! Anyway, I obviously managed to join & pleased I did as it helped me come to my decision. Hope you get as much help & info on all things RD related as I have. x

  • Good! I find that meditation helps with the positive attitude bit. Good luck, Jo

  • Yes I do try meditation. I just have a chatty mind!x

  • Me too!

  • Hi I was diagnosed last week as well so I know how you feel I start my medication when I come back from my holiday

  • Hi Chocnbags

    It's quite scary isn't it? Not knowing how your body will react to the medication, hoping it all goes well, what the future holds.

    I hope you are able to push the RA out of your mind for your holiday and enjoy the time away.

    x

  • How are you getting on have you started taking your tablets ?

  • Hi Chocnbags

    I have had to halt starting medication as my lung capacity came back as low. I am actually quite relieved by this as I don't want to take it anyway! They did give me a steroid injection (in my bum!!!) which has actually helped.

    how are you getting on?

  • Hello my steriod injection is wearing off now :( I haven't had a lung capacity test only a chest X-ray even though I have mild asthma

    I might have to ask about that .the steriod injection is great can make you forget you have anything wrong lol.i have been give the tablet form to cover me while I go on holiday but the side effects sounds quite bad is I will see how I cope. Before taking them :)

  • hmmm...definitely ask for it. As far as I know they aren't supposed to give you MTX if the lungs are already compromised.

    As I was walking down the stairs with no pains in my knees I thought 'ah this is what it was like before I had RA'.

    How long did your steroid injection last for?

    Where are you going on holiday?

    Fingers crossed the tablets don't affect you too much if at all.x

  • Hi sorry for the late reply my injection has lasted about 5 weeks I'm getting bits of pain now but nothing like before yet , I'm off to sharm el sheiks on the 7 august for 9 days , a friend of mine split with her partner so all I've had to pay is £50 to change the name on the booking :) as much as I have a fear of flying :( I've decided this could be my last pain free (sort of ) holiday for a long time so I'm going to sun ah and relax. And eat as much as I can lol

  • wow! that is a bargain holiday! you definitely need to make the most of it! Luckily Egypt isn't too far away so you'll be there in no time.

    Let me know your holiday antics when you get back. Enjoy!

    x

  • hello beautifulmovement

    i too have just recently been diagnosed with rheumatoid arthritis …i understand only too well as I'm sure everyone else does all the fears you are going through as I'm still trying to understand my new life…i have been put on methotrexate and hydroxychloroquine….just spelling that is hard enough lol…i have been methotreaxate for now 4 weeks and hyroxy for two ,,,,for me i have to say I'm feeling much better but the methotrexate does make me very very tired for a day or so other than that no side effects at all

    i wish you well

    big hugs

    :)

  • Hi Shinydiamonds (love the name)

    It's so nice to connect with others who know what I'm going through so thanks for getting in touch. They have delayed my treatment due to something with my lungs but it really helps to hear such an encouraging outcome of your treatment combination and that you feel better. I'm still really anxious about it all if I'm honest. I've had a steroid injection that's made me feel better, reminds me of what I was like before RA to an extent.

    x

  • Hi Beautifulmovement! I too have been diagnosed quite recently with RA and i too am struggling with the idea of taking drugs. I don't even take paracetamol for headaches...lol. They have prescribed me hydroxychloroquine and i have to be honest i haven't yet started taking it because i am concerned with taking drugs for the rest of my days and i too am only 30. I have no children yet and I am so very worried that RA will make the possibility of having children less likely.

    I am new to this site and I am so glad it exists. I think it's great that we can air our concerns and personal experiences and help support each other on this warrior journey to battle RA.

    Love and light

    Lara x

  • Hi Lara

    A very good friend of mine signs off her messages the same way 'Love and light', it made me smile to see yours is the same. :)

    We sound like we're going through the same thing, not just RA, but all the thoughts and feelings that go along with diagnosis. How far along is your RA?

    It's so daunting isn't it? It's also quite upsetting and you almost feel lost not knowing what's the best thing to do for yourself.

    I have been told that Hydroxy is ok to take when pregnant and trying for a baby, so unless it's a really rare side effect, it sounds generally safe to be able to conceive on it so I don't think it messes up your insides, but speak to your nurse/consultant.

    I spoke to my nurse about wanting to have a family soon and she told me that Methotrexate wouldn't be the best medication for me to go on but Hydroxy and Sulphasalazine is ok.

    She also told me that if I have an operation I need to stop taking meds for that time so I don't get an infection. And that I can pick up any illness going due to DMARDS suppressing the immune system. So many things to consider!!

    I do think that taking meds will be the best thing in the end because my fingers are already damaged and I can't imagine what will happen if it gets worse!

    You will be the only one that knows what's best for you and your body. I'm sorry you have to go through this, but you really aren't alone. Let's definitely keep in touch and support each other. Everyone on here is so lovely, I don't know what I would do without this forum and all the wonderful people on it.

    Much love to you

    Sabrina

    x

  • I was also very scared, but Methotrexate works very well for me. A little nausea at the start but no side effects now.

  • Hi beautiful movement. I too am newly diagnosed and also am confused and scared. :-( I have been struggling with the idea of taking drugs. I have been prescribed hydroxychloroquine along with a vitamin d supplement.

    Anytime you need to chat just msg me. I find it difficult with family and friends as I don't always feel they understand how I am feeling.

    Love and light xxx

  • Sabrina, I can truly understand your concerns. I have had the same and still find myself in denial at times, but you must believe in your doctor and if not, have a second opinion immediately. It is imperative that you begin treatment right at the on-set, as much damage can occur without. I suggest that you do a lot of reading about this disease and also take notes for your doctor, explaining your feelings and asking any and all questions that you have as you go along. Remember, you are NOT alone. There have been great strides in the past ten years or so, therefore try to hold positive thoughts, try not to stress and "do the right thing" for your overall health.

    Jill of the hill

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