My first yr with ra : Hi my name is amber and I'm 2... - NRAS

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My first yr with ra

Tooyoungforra
Tooyoungforra

Hi my name is amber and I'm 26 years old and I just got diagnosed with ra a yr ago while I was pregnant with my son. It's been a pretty rough and painful year for me with my 2 young children and their father. I just recently started seeing my rheumatologist and got some meds but they don't seem to be doing exactly what I thought they would. My question is how long do I wait to call my doctor about this.? I can feel with each day I go longer with the wrong medication the more my joints are being affected. And I've got fluids in my lungs due to the ra and mgus. Need less to say in just one year my health has went to poop and I feel like I'm never going to have a normal life anymore and I'm scared of ending up in a wheelchair.

26 Replies
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Hi, I feel for you as your in the prime of your life with a lovely family. Don't despair! As there are more advanced medications out there to help, it's finding the one that suits you, as we all say on here "what works for one does not work for another". Try ringing your RA nurse and ask her for some advice, these are the professionals! Keep posting on here as there is always great advice given by some wonderful people who all understand what your going through. Hugs and xxxx

Thank you! I don't feel so alone anymore finding this website. My fiance is there for me but he doesn't understand what it takes to get up every morning knowing what I have to face that day. I've been on this medicine for a month so hopefully it will start to work

Hi Amber, don't be to hard on your partner, my husband has lived with me and my condition for over 20yrs and nobody understands it!!(i dont at times) only those who have it. Be kind to yourself, rest when you can, and accept all offers of help with the children. Take care and keep posting! X

It will get better..,,,but most RA drugs take a bit longer than a month to kick in.

In the meantime accept all the help that is offered...& take your fiancé with you to your next rheumy appointment......when you explain what RA means a lot will go over a young man's head.........but hearing it from the doctor will hopefully means he is a bit more helpful, until your meds kick in,..hope that is soon.

Hidden
Hidden
in reply to AgedCrone

Agree with that Agedcrone, I used to go to appointments alone but my husband took me once when I couldn’t drive. He came home shocked at what he had seen on X-rays and at what the doctor had said. They can never experience what we go through without getting RA but it gave him a big insight.

I'm sorry that you have had to join this forum but it is very supportive!

The thing that we all learn is that unless we are actively managing our condition, the health professionals think everything is OK. So be as pro-active as you can - keep a record of what is happening and ask for their help.

The treatment pages on the NRAS website are a great help with sorting out medication and there are lots of hints and tips there as well.

But it does take time for the medication to work - you don't say how long you have been having it or what you are on. If you have more specific questions ask and we'll all help from our own experience, but we can't, of course, give medical advice!

Never wait just call, it’s your pain hun. Sooo sorry you got this so young, my heart goes out to you x

I was working as a Caregiver and put my aches fatigue ness and severity of pain down to my workload , going to bed each night thinking no one should have to feel this way , after two and a half years

I started resenting giving my all as a Care Giver /housekeeper / and companion feeling taken for granted and repetiviley daily going over the same workload that the lady I cared for and her able bodied husband were neither house proud or hygienic to clean up after themselves enough that. ,because I was living in and very underpayed I had my fill and rented a property in another town , to where been less inactive looking for a different job , the pain and the intensity of it in my joints became worsened ,suffice to say I went to a new GP that others put my pain down to getting on in years and couldn't give an explanation to why my leg would just give away . It was a relief to learn I do have arthritis , and will go for my first MRI scan next week to know for sure to how much it has progressed and what treatment I can expect to receive .i also signed up for RA awareness and am so glad to have signed up with other sufferers the same condition and feel we should be taken more serious , as I wasn't , then left to endure in silent prolonging been misdiagnosed ,

Well to say it never rains but it pours to you is an understatement. Feel for you ! But things will improve. They will keep helping you till you get sorted. Here's the but... you do need to be your own advocate in this illness even when you feel rubbish. I mean by that the doc put you on a drug. They are happy at the hospital thinking everything is ok as you are at home not saying or telling them it isn't. So I would call them and tell them things arent good.

Also the rheumy team have access to physio, it who can give you loads of gadgets to help and counsellors. So if you feel any of that would help tell them to refer you!

Last thing is talk to your health visitor. You might become free childcare to give you time to have a break and spent time with hubby. My friends HV was brilliant and so helpful with her little ones.

And I bet you've helped folks out in the past , so time to call in those favours... get people to bring milk in for you etc!! Then hopefully your meds will kick in and you will feel the benefit.

Good luck, keep strong you RA warrior!

God I really feel for you. I'm 55 and just got diagnosed with RA a few days, I was ranting on about how unfair life is getting this bloody horrible disease at 55!! Unfortunately i can't give you any advice as I'm new to all this medication malarkey! I've just started Methotrexate. How long have you been taking the meds? It can take up to 3 months for them to work. It depends also on how you feel they are not working for you, what s your symptoms?

I've been on my meds for about 4 weeks now. But I've been on prednisone for 4 months. I still have swelling in my hands knees and feet pretty bad and I'm still very stiff. Its lightened up a little but not fully. I'm tired and always have a low grade fever. And I have to see a hematologist and a dr about fluids being in my lungs.

God you poor thing! Why do you take prednisone too?

Cwendyn
Cwendyn
in reply to Jaxine

It’s standard treatment until the R.A. drugs kick in. Some people are on it permanently 😀

Jaxine
Jaxine
in reply to Cwendyn

I wasn't prescribed this just Mtx. Wonder why

Cwendyn
Cwendyn
in reply to Jaxine

That's interesting. I was as I could hardly walk at all and it took about 20 attempts to get up a single step. I must have looked very funny (it wasn't for me though!)

medway-lady
medway-lady
in reply to Jaxine

If you had the steriod injection then it would not be needed as it can be either / or not together with. Not always needed a good idea as can have side effects as well. I've had both for RA and always found injections better but now its no choice its pills. So unable to sleep, Been up since 6.00am and like a hobbit could do with another breakfast but hve a scan later on so no food for 6 hours. boho.

Cwendyn
Cwendyn
in reply to medway-lady

I permanently had the munchies!

medway-lady
medway-lady
in reply to Cwendyn

lol lol xx

Hi, I was diagnosed at 29yrs old, at the time I had a 3 & 5yr old, who are now 9 & 11, my meds took about 11 weeks to feel the full effect, it does get easier, you learn to adapt to the things you can do or find ways to do it differently. Always go with your gut feeling, rest when you can and slow down.

I know it’s easier said than done, get yourself a little routine and do your best, don’t over do it or you’ll feel worse the next few days xx

Thank you

Hi I'm in my early 20s and was also diagnosed recently. So I've only been on mtx for a short time and haven't noticed much improvement either. However, I talked to my rheumy nurse last week and that was reassuring and I agree that you have to mention it to somebody. Otherwise they think you are happy with your treatment. I don't have children yet but my job is really physical and its difficult to manage. So at least you aren't the only young person or here I guess... X

Yes I agree. I've called them once before and they told me if it doesn't work within the next 2 weeks to call them back and that was a week ago. So I have one more week. I definitely have advice with this. I appreciate everyone's advice it feels good to have people to talk to

Oh bless you. Things can get better I know they have for me with the right medication. I hope you have a nurse helpline,if you do use it, don't be shy or worry you are being a nuisance, you are not. As Crazyxxx said make sure you tell them how you are feeling, take photos of any swellings you have, lol as by the time you get to see a Rheumy the swelings have gone.

You can be referred to Occupational Therapy by your Rheumy team for aids to help you.I had handmade gloves made by them to help my fingers and wrists.

Also think about getting referred to HomeStart, they could be of great help to you with your children.

U have youth on your side. Hopefully the dmards will work for u, but if not next step is biologics ,which I understand work better if u are slim and young!! Hang in there, I don’t post much but I do read this site and others. If only to know that I’m not alone....😕

Ah bless you honey I feel for you as diagnosed with RA at 17 in 1986 when treatment wasn’t great and it led to my joints being severely damaged. You need to see your Rheumy as you can’t go on like this with 2 small children and husband to look after. Treatments now I think are very good and I’ve been on a biologic drug (Embrel, now moved to Benapali) which is doing wonders for me. Please go back as you do not need to struggle like this xx

Thank you I am calling my doctor today

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