Hi, I've just joined this forum. Bit of a long introduction....
I'm 48 and was diagnosed about 13 years ago with Rheumatoid Arthritis. Since then I've been only on Plaquenil. My worst symptom is usually chronic fatigue, tiredness just seems to be a permanent feature of my life, even when my joints are painful they have never been particularly red or swollen, but for the second time in three months now I've found myself laid low with a bad flare up - I actually stayed in bed for two days during the last flare up - something I'd never normally do is take time off work, but I felt I had no choice. My feet and ankles are the worst, but it's also my hips, and hands, particularly thumb joints giving me a problem at the moment, together with relentless fatigue, and feeling incredibly tearful. I've left a message on my hospital helpline telling them that I now want to try methotrexate (something I'd been putting off the last few clinic visits) my next appointment is not scheduled until November. I work as an Early Years Teaching assistant in an infant school, running around (sometimes literally) after 90 4 and 5 year olds in a school setting. The last few days I've been overwhelmed by the anxiety of wondering whether I am going to be able to continue in this role. I love my job and it's breaking my heart! If I'm honest, I also really don't know what else I'd be able to do instead! It's making me so worried.
I guess my question is.... am I ever going to feel ok again, or do I have to get a totally different job in order to cope? Yesterday I did 16,000 steps on my pedometer just at work, and this is fairly standard for me even though I tried to 'take it easy', I literally barely sit down all day long.
I'm scared of methotrexate, scared of having chronic illness. My mother is a very difficult hypochondriac, and I think a desire not the 'be like her' has put me in denial about my condition for years. I've had a rough few months medically, being investigated for ovarian cancer (which I thankfully don't have), and ending up with surgery to remove my ovaries and the mess cause by grade 4 endometriosis and adhesions. It was an incredibly difficult time waiting for diagnosis, going through various scans etc. I took half term plus three weeks off work after surgery, and now only have to get through this week and 2 days next week before the holiday kicks in.
Do others take daily pain relief, if so, what? I'm also frightened of this as mum messed up her stomach with NSAIDS over the years, plus a friend's sister developed an addiction to prescription pain killers and last year overdosed.
I have another family member who is trying to persuade me not to take the drugs, and go down the route of totally altering diet to reduce inflammation... any thoughts on this? I think she's well meaning, but also think she totally underestimates my pain.
I guess I'm just looking for some companionship on this lonely diagnosis. I 'look' fine, but feel so very far from it, and that's making me feel really vulnerable right now. I should say, on the home front I have a lovely supportive husband, couldn't want for more, so appreciate how fortunate I am there.
Anyway, hello!
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girli1111
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Hi there fellow early years TA and member of the RA club!!
All I can say to you is get the drugs!!
I remember feeling like you- couldn't walk far because of the pain in my feet and knees. Used to have to sleep on my hands to stop them from curly up over night- it is a cruel, ghastly disease. But I now take methotrexate and a biologic and i can live a normal life with very few flares.
I totally get where you're coming from regarding the long term drugs and I hate the fact that this will be my life and tha this is the best I'm ever going to be BUT I have a quality of life that means I can enjoy most things and enjoy working and being a mum to my kids and for me, that's worth the gamble.
Get in touch with your rheumy nurse and get an emergency appointment- it may take a while to find the drugs that work for you but you have 6 weeks to get started!!
You poor thing. Don't be scared of the drugs, they could be your lifeline to getting your life back. I really wasn't keen on taking anything at the beginning but felt I had no choice as the pain was so horrendous. However I am now on a biologic/biosimilar called Benepali which has worked wonders pain wise for me. I don't have any experience of methotrexate but know it's worked wonders for alot of people on this forum. I am a children's OT so know only too well the requirements of your job to kneel down/sit on very small chairs/crouch down constantly etc. It's hard going! Won't lie, I'm still not back to my old self but I'm in a much much better place than I was. You can get there too. Hang on in there, not long till the holidays! Take care.
Sorry you feel so bad at the moment. Your employer has a duty of care and under the equalities act need to make reasonable adjustments for you in order for you to continue your much loved work. As an ex nursery nurse I know how challenging working with this age group can be! Can you use a mobility aid at work to enable you to sit down longer? It is really good for young children to see diversity in action and to see how a disability can still mean people have a massive contribution to make to society. Speak to the Head Teacher and see if you can work with other colleagues so you can undertake the tasks you can do and have someone else undertake the more challenging tasks. I think it is really important that all your colleagues understand about RA and its effects including the fatigue and pain so they can be really supportive to you. Good Luck,
Hello darling ,well i will be honest with you life will never be the same. It will be different ,but you will adapt to the new you. Mtx is a good drug as long as you can stand it,some can't and others like me don't have any side effects. Regarding mums,mine god bless her(she died 17yrs ago before i got ra) Anything i had she got worse,so i am glad she never got to see me like this.
I am a great believer in the drugs that i have been given and my thoughts on the alternative route is if this worked the medics would put us all on it saving the NHS a lot of money. I know they do say to avoid some foods eg; acid fruits.
We are all here for you and i am on here all day long as i don't work thanks to RA and other diseases,so if you want to chat i am here. I live in the Midlands just outside Coventry. I love my home and especially my garden.xxxxx
Welcome and may I just say how well written your post was. So clear and explanatory. You sound very level headed and your understandable anxiety comes through.
I am rushing off to work else I would love to really answer you at length.
But to cut a long story short, go to your GP, get on record how much you are struggling.
Take the pain relief that's offered. Tell them about your Mothers experiences with NSAID's so they can give you stomach protectors such as Omnaprezole.
You are obviously flaring badly and you say you were diagnosed 13 years ago and gave just been on Hydroxychloroquine since then, however I'm sure you were also told that RA is progressive and currently incurable. It is time for you to start taking medication that will give you back your life and protect you from Joint damage in the future.
Living with chronic inflammation is very bad for you on many different levels.
As for your friend who says change your diet, well by all means use diet in conjunction with traditional therapy just don't waste valuable months/years where you could be preventing joint damage fannying about with vegetables and raw food etc etc etc.
Read lots of info on here and get a hospital appointment as soon as you can. It's time you stepped up your treatment enabling you to cope better with a job you love.
Must go as Im off to Dallas working and I'm gonna be late.
( I've got sero negative RA, and am on Hydroxychloroquine and Benepali injections)
My very best wishes to you, good luck, you will get so much fabulous advice on here.
Hello there,, I am so sorry to hear of your pain. I too was and still am afraid of taking the drugs and like you, my Mum too was on one medication after another (she passed on last year).
I also tried plaquenil for over a year but was taken off due to it discolouring my skin, then MTX but my liver was not happy on this and then leflunamide for a few months - this stopped working and my hair started falling out.
My consultant then started me on a biologic (Abatacept) and it was great for about 3 months. I had my life back! Sadly, my vertiginous migraines (which I suffered from about 25 years ago) came back with a vengeance so I stopped taking it but my consultant did say my RD was in remission at my last consultation about a month ago.
I am waiting to see a neurologist to help me manage my vertiginous migraines before I restart Abatacept as it had been a 'wonder drug!
I do also avoid gluten, sugar and processed foods and am a vegetarian.
I really was very scared when I was first diagnosed but once I had accepted the condition, life did become easier.
Oh gosh all your concerns bring my early experiences flooding back and although my disease has naturally progressed I am in a far better place.
Back in 2004 I started on Plaquenil as the first line of defence and I struggled for the first four years to the point of been weeks away from not being able to walk due to stiffness and pain. Rolling forward to present day...I was on MTX for maybe three years and it changed everything, I couldn''t have functioned without it. My poor consultant must be perplexed at my resistance to his suggestions. I always trust his word and get there in the end but I postpone everything to the detriment of my condition. I spent time and a fortune in 2004\5 buying Cidar Vinegar, Flax Seeds, Pumpkin Seeds...cutting out potatoes and tomatoes, it got ridiculous - no more.
In time I was moved onto Enbrel injections and now 8 hourly RTX infusions. I don't believe that my condition is obvious although it's severe and that is due to the drugs.
Don't fear hypochondria your condition is very real and extremely damaging if not managed correctly. As my consultant says. "It's a case of dealing with the here and now and getting the quality of life back.
Take lots of care, be kind to yourself and trust the experts, they have studied, read and listened. Their education is ongoing as well as research, don't rely on short columns on the internet or a couple of reassuring sentences from the well meaning.
Meant also to say Girlie1969, when I was in extreme pain before starting on Abatacept, my consultant put me on Lodine SR. it reduces pain and eases inflammation but is not a long term solution and needs to be taken with a stomach protector. It will tide you over.
Not sure if GP's can prescribe this but maybe GP can intervene and at least get your consultant appointment brought forward?
Hi there...bless you.I too used to be in a bad state but seem to be alot better nowadays due to the hydroxychlorine that you take.I take it aswell as sulfasalazine. I have tried methotrexate which gave me liver problems and made me breathless.I have been on 10 mg prednisolone for 5 years too along with Pregabalin. I used to scream in pain and cry alot.I have also tried biologics and all 3 never even started to help. my case is complex as have other auto immune diseases plus now on warfarin due to blood disorder.
I don't think you probably have recovered enough from your operation too.My sister had her ovaries removed and lower section of stomach n appendix and thought few weeks off work would be ok but it floored her.
You need to have more help from person who treats your RA to get it under control.I know it incurable but it can be dampened down.
I had to give up work as cook and it broke my heart and I have to rely on husband to get out so please at least try other meds and ask for help.
Hiya girli1969 & welcome. I'm sorry to hear you're struggling, that said I think you have opportunities to improve given you've stayed on HCQ so long. I also started my RD treatment on HCQ which stopped working after a year when MTX was added. I've been on it 8 years (currently double therapy with leflunomide) & am sure without it I wouldn't be doing as well as I am. Don't get me wrong I have iffy days now & then but that's generally when I've overdone things, usually in the garden, & it's reminding me it's still there!
Only you can make the decision to try MTX but it is the best DMARD still, the one most often prescribed initially. Like you I have troublesome feet, not helped by my Rheumy refusing to examine them with them not being included in the DAS 28. Eventually my nagging paid off & as I'd feared disease activity had done it's best, which could well have been avoided. I'm saying this because I'm concerned you may have troubles too remaining on HCQ alone, particularly as from what you've said you're flaring. Joints don't need to be red & swollen to indicate how you're doing generally that's the concern so please, do discuss your next step in treatment with your Rheumy. Is there no way you could have your appointment brought forward or even see your nurse or specialist nurse prescriber in order to start MTX, or another DMARD? Having such a physically tiring job can be hard on your joints so the sooner you're under better control the better if you're to protect your joints.
You're not gong to turn into your Mother, please don't think that way. You have a very real condition with real need for specialist meds. You'll be feeling vulnerable, that's completely understandable having been through what you have recently with your ovarian cancer scare. Speaking as one who also has endo (since my teens) you know pain, there's absolutely no need for you to be in pain given the correct advice & prescribed appropriate pain relief. That includes NSAIDs often, excellent anti inflammatories often used in RD & which should always be prescribed concomitantly with a PPI (a stomach acid reducer, omeprazole or similar) in order to defuse the effect NSAIDs can unfortunately cause. I also have OA & prescribed etoricoxib (a COX-2 NSAID), co-codamol & Butec (a transdermal patch, buprenorphine). I also have peripheral neuropathy for which I take Lyrica. None of these have any effect on my tum because I take omeprazole, which incidentally has been prescribed since the day I was diagnosed. Do discuss options for you, if you feel you need something of course. You do take an enteric coated (film coated, intended to stop stomach acid probs) brand of HCQ don't you? If not do request you are.
I'm afraid however well-thinking family members or friends are it's not them who has RD! There's no doubt a healthy & varied diet helps as does avoiding eating anything that you recognise causes inflammation (many say nightshades - tomatoes, potatoes & the like, cause problems) personally they don't affect me thankfully, but diet alone isn't recommended if we're to control the disease. That's another thing, not everyone responds the same, our disease is as individual as we are.
You've found companionship, & compassion here. I do hope some of my rambling helps, gives you confidence to push for better treatment, or makes you think at least! 😊
Hello, you sound as if you are normally coping well with living with RA and maybe that is where a small part of the problem lies. If you are in denial and can't accept that you have to pace yourself, your body will tell you when enough is enough and give you a flare. Please don't be afraid of the RA drugs or their side effects. Inform yourself about them by looking in the right places, like NRAS or the NHS. Avoid Dr.Google if you can. The NRAS helpdesk is also there for you if you have questions but no answers. They also do "living better with RA" workshops. I hope you can use the holidays to be good to yourself and get onto drugs that will help. All the very best and stay in touch.
If your relative doesn't have RA, then they don't have a clue what it's like. Don't listen to them. Even if your pain wasn't too bad, there is the damage to your joints, which a drug like Methotrexate would prevent.
Thank you so much for all your replies - I don't feel quite so alone with this now! I've been playing ansaphone ping pong with the rheumatology advice line at the hospital - I leave message for them, they leave message for me, but no joy actually getting through to anyone! Will try again tomorrow!
Hello I agree with all your replies! Hubby is starting on a biologic drug this Friday as well as mtx and others. Must admit when he lines up all his meds in the morning its scary. We debated at one point of ditching the drugs and going all out on a plant based diet etc etc. However we were worried about incurring any more joint damage for hubby. So he takes the drugs. We eat healthily and take regular exercise. I can only say for hubby that he is improving now taking the drugs and maintaining a healthy lifestyle. Hope all the replies are food for thought. Sue 😊
I'm six years into my diagnosis, and at 55 years old doing quite well now. I was diagnosed at 49 and like you was nervous about methotrexate. I started on salazopyrin which worked well for a few years but then I started regular flare ups and disease progression and had to go on methotrexate.
Well I wish I'd done it sooner! I stayed on a lower dose of salazopyrin but gradually introduced 15 mg of MTX a week. At first I had mild nausea and headaches with it but I soon learned to take it early evening and then go straight to bed. I'm more used to it now and don't get any side effects at all. You need to take the high strength folic acid the morning after and that helps.
Best of all I haven't had any flare ups! Occasional aches and pains yes, but I take a Naproxen if I need to (with omeprazole to protect my stomach) and that works for me. I lead a busy family life, work full time in a hospital, go to the gym, volunteer at my church and care for my mother so I'm not slowed down at all! Obviously fatigue can still occasionally strike but if it does, I make sure I rest up and take it easy. Everyone in my family understands if I have to opt out occasionally!
Wishing you all the best, make sure you get an earlier appointment via your hospital helpline so you can sort out your treatment. Good luck, you know where we are if you need us!
I too questioned the RA meds. The side effects are horrendous. I am currently working on my diet. Alkaline & electric eating. I boldly took myself off of my medication.I now have my vision back know more blurry vision my thoughts are clear.. My joints do hurt but they only really bother me if I sit too long or when I'm sleep. I cannot believe the amount energy. I m not telling you to stop your meds. But do try to change your diet it does work. I watched Fat sick & nearly dead. I also go on YouTube and get receipes from Ty's kitchen and other like minded alkaline recipes channels. Try!!! Try to help yourself these Drs only push Drugs and the drugs only bring other medical issues...TRY TO HELP YOURSELF!
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