I was recently diagnosed with RA, I’m 28 & have a young family so it’s hit me hard. I’m trying to be positive & help myself as much as possible with anti inflammatory diet, tried acupuncture, having reflexology, taking turmeric, warm wax baths, wrist splints, seeing a physio. I’m trying everything I can think of!! I’m on hydroxychloroquine 200mg twice a day & have been taking for 6 weeks so still early days. However I’m feeling absolutely awful at the moment, I had a bad flare up a couple of weeks ago which lasted 5 days, I’m particularly struggling with pain in my knees & wrists at the moment. I have the worst fatigue & am feeling very down i don’t feel like going out or doing anything, thank goodness for my 2 children, they keep me going. I don’t know whether it’s the Ra, the meds or something else?
I’d be so grateful for some other people’s views & experiences please as I don’t know what to do? I had some horrid side affects to the meds a couple of weeks ago but I really want the meds to work so ploughing through it.
Hi Laura I think it's early days but you possibly need another dmard added to your meds, I was the same over 3 years I've been on different combinations of dmards until finally last July a biological drug (Benepali) was added along side Methetrexate and was brilliant at first but at the moment I'm struggling with my RA and although I still go to body conditioning 2 a week I think they will try me on something else, usually if you fail on 3 dmard then they will try a biological drug, don't suffer in silence give your rheumy team a ring and let them know xxx
Thanks for your advice. How long do you think they’ll want me to try a Dmard before adding another? I called my rheumatologist when I was getting my bad side effects & the secretary said she’d spoken to a dr & his advice was to see my gp! Seems crazy as the gp will go by what the rheumy has said!
I really want to think this Dmard is helping but it really isn’t!
Sorry to hear you’re struggling with your RA at the moment, hope it settles really soon. Xx
Hi Laura
So sorry thats happened to you, someone else on here is same age with 2 young children, hopefully you get one from them. The fatigue is awful but does improve a bit with right drugs, effect of RA and drugs i think. Side effects can improve with time; didn't get on with hydroxy, just methotrexate at mo' and yeah theyre not nice. Can GP get you better pain meds? You can feel bounced between rheumatology and GP at times. Hope you get a bit of respite soon x
in reply to
Thank you Kerena for your reply & advice. Hopefully once I’m settled better on some meds, my fatigue will improve (hope so!) The dr also gave me some ampitriptyline for before bed but I was so knocked out, I could barely get up the next day & then I felt so out of it for the remainder of the day! What other pain relief could they prescribe? I used naproxen and etoricoxib at first but try to avoid those drugs as makes my tummy really uncomfortable. So the only thing that helps at the moment is co-codamol bit worried about taking that a lot? Xx
in reply to
Difficult one? I got tramadol but like you felt awful next day, slept like log tho'. Had naproxen too for anti inflammatory, same! Maybe ibuprofen or someone else will post better ideas. Good luck. X
I'm very sorry you have needed to join this forum at such a young age.
I was started on methotrexate on diagnosis. I thought this was gold standard. They may have started hydroxy chloroquine because of your young age.
I agree you need adding another DMARD now.
I hope you start to feel better soon. All long term conditions you can suffer from depression. There are various services that give counselling. In my area you have therapy for you and mind. You need to talk with you GP or consultant they should be able to suggest a service.
Hi Laura I know exacley how u feel I to was young when I took ra 26 I had to young sons 1 few maths old other 3 it was very difficult .it does get easier when u get the right meds that work for you .keep at it gp if it still in pain hugs amy
Thanks Amy, it’s reassuring to hear it gets easier once my meds are right. My daughter is 2 & son is 4 so it’s full on as I’m sure you understand! Hope things are better for you. Xxx
My rheumy has always been very good at providing me with a prescription for short courses (4 or 8 weeks worth) of steroid tablets (Prednisolone) whenever I have been in a lot of ongoing pain or changing DMARDs. You could try ringing your rheumy, or his/her secretary, or rheumy nurse if you have one, to ask if it's possible for you to have some, just to give you a break? If you are feeling low take care though as sometimes steroids can make you feel worse. I usually feel so good being out of pain that I am on a high! Hydroxy, as with the other DMARDs can take about 12 weeks to work. I started on methotrexate which didn't work that well until I eventually had hydroxy added to it, after about 7 months. Together I was then in remission - leading life normally again. So there is light at the end of the tunnel - it is just a case of getting the right meds which can be a bit trial and error - but you will get there in the end! xx
Thanks for your reply and pleased to hear there’s light at the end of this long tunnel! So pleased you’re in remission & leading a normal life, hopefully that’s what I’m working towards.
I’m seeing my rheumatologist on tues so hoping they’ll add another Dmard to my meds. They weren’t keen on giving me more steroids although they may have no anticipated how bad I’d feel
Ha, I WAS in remission - not so now as had to change meds as couldn't tolerate methotrexate, so back to square one now but new meds in the pipeline so will start again and hope for a good result. This is what it can be like. Ups and downs. But eventually it all comes together and things are good again. I took a 'diary' with me of certain dates when I had been particularly bad, how I felt, what was swollen, even took pics on my phone. All helps to build a picture for the rheumy. Best of luck and hope things improve soon.
Sorry to hear about your diagnosis. I've had arthritis since age 10 (technically jia as it began during childhood) and although I'm 40 now I was around your age when I had my first 2 children and I remember how tough it is when they were young especially during my flare ups when I felt so helpless and useless. I've never been on disease modifying meds as they weren't around when I was first diagnosed so can't really add to what others have said but during the bad days I just have to keep reminding myself that things WILL get better. I have a tendency to feel that things WILL stay bad even I'm in pain and then once feeling better I forget how bad the pain was - hence having to remind myself that there will be good spells again. I had good pain releif from GOPO and curcumin and boswelia (but only take things like that under care of trained herbalist or with doctors approval as they can conflict with prescribed meds) and by that point a lot of the pain I was having was from the joint damaged by RA leaving more of an osteoarthritic damage so I'm not sure how helpful the alternatives would be otherwise as the disease modifying drugs will help prevent joint damage so if I had that option way back then that would obviously have been better than just pain releif meds and alternative meds. Wishing you all the best. You are stronger that you know and hopefully things will get under control soon. (My daughter doing well on mtx when diagnosed at 2 and now 5 she's doing everything other kids her age do so I know how well the drugs work once dosage etc sorted and you find the right thing to work for you). X
Thank you so much for your reply. That must have been hard having RA since such a young age, you sound very positive & strong. Il try to take that perspective more! Your daughter sounds amazing
I’ve just phoned my rheumatologist & ive got an appt next Tuesday so hoping they’ll be able to help me.
I read about the curcumin & boswelia, it’s on my list to try! I’m taking turmeric & fish oil tabs at the moment. I may add the others too after some research.
Wishing you all the best - I think we all have good days and bad days so be gentle on yourself - it's perfectly ok to feel sorry for ourselves sometimes too as it is tough going through what everyone here is going through. From a practical point of view encourage your kids to be as independent as possible - I remember the back pain agony of lifting them into cots and car seats so my 3 learnt from a very young age to climb themselves into a car seat. Definitely take whatever meds the doctors recommend - I believe alternative remedies definitely do have a place for longer term pain management but initially you've got to get the ra under control so it doesn't cause you joint damage (I have just had a hip replacement because these treatments weren't available when my arthritis began). Us mums are strong and you'll get through this and your kids will be mega proud of their mum. X
Thanks Rebecca, yes that’s very good advice, I do need to accept help from my husband more & encourage independence from my kiddies, fortunately they both want to do everything themselves, even if it takes 3x longer!!
Thank you for all your advice, I will make getting my meds sorted my priority,
Take care & hope you’re recovering from your hip op well. Stay strong xx
Have had RA for 8 years and know what you are going through. Mine started in my knees and wrists too and took 6 months to get an appointment with Consultant.. Methotrexate helped at first then side effects were worse than pain. Same thing happened with Leflunomide and now waiting for hip operation. Although joints not too bad just now fatigue is awful. Hope you get something that works soon.x
Kindly see if AmyDee207’s post ( healthunlocked.com/nras/pos... ) might be of interest, Laura8989? ☺️ 🙏 Wishing you & your beloveds the very best. 😌 🙏 🍀 🌺 🌞
I'm 23 and have lived with RA for as long as I can remember. This puts me in a fortunate position that I don't know any different. For example, the fatigue never bothered me as I thought how I felt was normal, because I have always felt that way. I am now working full time and at college part time so I can really feel a difference now!!! I've never given myself enough credit for what I do every day. My advice to you would be to take each day as it comes, listen to your body as much as possible and give yourself the credit you deserve!! You're doing great, many mums are tired without dealing with a chronic illness. We have good days and we have bad days, don't let the bad days get to you too much, they will pass. Promise x
Sorry that you’ve had to live with this illness for so long. You sound very positive which encourages me. It’s helped me a lot already just talking to people on here.
You do amazingly with working and college!
I think the biggest hurdle for me is to accept that I’m not like I used to be and realise I can’t always do a lot, however frustrating it is!
I'm very similar to yourself. I'm 26, one young child, full time stressful job. Really struggling at the moment but I'm only 5 weeks into treatment so trying to be hopeful. Just feels very lonely and depressing at times.
Sorry I can't help, I'm looking for the same answers you are.
Hi, sorry to hear you’ve recently been diagnosed too. What meds have you been put on? Have you had side effects?
I’m seeing my rheumy for an early appt on tues so hoping they’ll be able to help me. I’ve had take codeine constantly for last few days which I really hate
You do very well to still work full time, I’ve given up work.
Totally agree with feeling lonely and depressed, I’ve found talking to people on here has helped as they know how it feels.
I've been put on sulfasalazine to start with, he wanted me on methotrexate but decided against it in case I wanted to have more kids. At this point I don't know how I'd be physically fit to have more but hopefully things change. I'm also on naproxen and cocodamol which aren't really cutting it but can't go without. Had a steroid injection which definitely helped for a few weeks. I'm six weeks into sulfasalazine now. Haven't heard anything from rheumatologist or anyone so don't know when I'll be back in. Was very sick with nausea, vomiting and diarrhoea for a few weeks but starting to settle down now.
Think if I quit work it would kill me. Able to work from home a couple of days a week which helps.
Talking to people on here definitely helps, makes me feel more normal! Really hope you find some relief soon this isn't an easy journey. Xxx
Hi Laura! I’m so sorry you’re dealing with this! It sucks at any age! I was 25 when diagnosed with a newborn & 2 yo, so I understand how scary and difficult it is as a young mother like so many others. A part of me doesn’t understand why more rheumatologists can’t start newly diagnosed with biologics. They just seem to be more effective at stopping progression and joint destruction than these outdated forms of treatment. But my best advice is be firm with your MD! Nobody knows your body like you do! I’m fortunate that my RA doc and internist work together to treat me rather than trading me off to one another! It is a frustrating disease. I hope you have a strong support system. Just listen to your body! Do when you feel like it, don’t when you don’t! I wish you the best of luck for the future!
Hi, thank you so much for your advice and reply! Yes it’s frustrating with the way they’re treating it and how long it takes. I’m going on tues so going to push to be put on another Dmard. Don’t know what else I can do. I think that NICE requires someone to have tried 3 std Dmards before they can have a biologic 😩 I’m just dreading the side effects from the other Dmards.
I’m very lucky to have a very supportive family and friends but it’s still hard for them to understand I guess.
I hope you’re managing your RA well.
Thanks for your encouragement and advice, really helps. xxx
I’m in the same boat! I’m 30 and have 2 kids, had to quit my job last December because of the RA. Come off Methotrexate a month ago because it has buggered up my liver and been going for regular blood tests to keep an eye on it. Got another blood test on the 6th and then see rheumy on the 9th, can only hope my liver is fine so I can start on something else. The pain and fatigue over the last week has been a joke! I slept most of today away! Had a steroid injection yesterday but don’t seem to have done anything! I suffer quite bad with the knees and wrists too. Unfortunately with the meds they all seem to have some side effects, I had a real hard time with Methotrexate! Feeling down is normal, I have felt the same since I had to quit my job. Hopefully things should improve for you with some time and once the meds kick in properly you will feel a lot better. Always talk to your rheumy team if you are in that much pain or worried about something. All the best x
Hey, thanks for your reply. It’s good to find someone the same age in the same situation.
Sorry you had to stop working, I did the same in October. It’s been hard although it’s meant I’ve had more time to be a mum which is nice. It’s just so hard with the pain and fatigue and not being able to do much with the kids now.
That’s not good for you with the methotrexate, really hope your liver tests come back normal & you can find another med. it seems so unfair that finding a treatment is almost worse than the RA with the awful side effects!
I’m not sure what the rheumy will do on Tues but it’s so hard that any Dmard takes so long to work.
Have they given you prednisolone-does it help you? I found only higher doses did anything. The only thing that’s helps me currently is codeine.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
i don’t feel like going out or doing anything, thank goodness for my 2 children, they keep me going. I don’t know whether it’s the Ra, the meds or something else?
Recently diagnosed ~ but no progress is the pain in my mind
Recently diagnosed and panicking
Anyone CEV and flown recently?
Recently diagnosed
