Rheumatoid arthritis in 29-year-old. Severe. Any advice?

[PilesMerHour]

A 29-year-old friend of mine has recently been diagnosed with rheumatoid arthritis. He and his wife are understandably devastated. They've had a taster of what's in store in that, over the past six months or so, he has felt very sore and stiff and tired, and has missed out on being as involved as he would like to have been with their six-month-old son: he has found it difficult and sometimes impossible to do up his sleepsuit poppers, bath him and pick him up. He has now been signed off work, and they're feeling most discouraged by the prognosis, which i snot good: maybe five more years of light work and then becoming "functionally disabled".

Does anyone have any experience of severe rheumatoid arthritis - especially in younger people - and, crucially, any tips and advice on how to handle it?

TIA

Phono, thank you. That's helpful of you, and I'm sure when I link my friend to this thread, she may well wish to get in touch.

Your experiences sound similar to my friends'. Although I realise it isn't at all "fixed" for you - I appreciate it can't be fixed - it is encouraging to hear that you are finding ways of managing the condition, and that it hasn't degenerated massively in the time since your DP's diagnosis.

All the best, and thanks again.

Phono, what contact details can I pass on to my friend? I see you're not CAT-able. I figured it might be a plan to simply pass your details on to her, and she can contact you if/when she feels the need.

Thanks.

The right medication is very important. Drugs for RA now can be very effective and this can stop joint damage developing further into complete destruction. Early intervention is important, so he should be seeing a consultant he trusts and requesting to be considered for the new types of RA treatment (mainly injections or infusions) if he has tried tablets and they are not effective.

The national rheumatoid arthritis society is a good place to start researching his condition and treatments as is the arthritis research campaign

Thanks, theinsider.

Thanks, Phono. Will pass it on.

My MIL was diagnosed with RA when she was 37 and has just turned 65.

She is registered disabled but is pretty active - can walk well and still does lots of gardening. Of course she struggles with lots of things and has bad days but with fine tuning of drugs she copes well.

She follows a dairy free diet and finds that helps. Staying as active as possible also helps. She has also made small adaptations in the house, eg, sofa at a good height for sitting on, goodgrips kitchen utensils - just small things that make her life a little easier.

She has actually just got a bit worse but they're tweaking her drugs again and hopefully she'll feel a bit better again.

I had a baby on boxing day and she came and stayed for 10 days to help with my 3 year old and she did loads. I don't think when she was first diagnosed that she thought she'd be doing as well as she is nearly 30 years later.

I was diagnosed 11 months ago aged 36 when ds was 7 weeks old.
It is normal to go through the grieving process for the normal life you have lost, but you do get through it. Having a small child and having to just get on with things is a great motivator although I know where he's coming from with regard to poppers!

They will find a drug regime to suit him, but it will take at least 6 to 8 weeks to feel any benefit and 3 to 6 months to get back towards being 'normal'.

However, even on good days you still get that 'just before you come down with a cold bone achingly tired' feeling and it does take a good half hour each morning to get going, but you allow for that in your schedule. Depression is also very common as part of the disease process.

You find you have to pace yourself and accept that on some days, you have to accept help or put things off (ironing being top of my list haha). It is worth being referred to occupational therapy for a home assessment, I couldn't wait so had to buy my toilet seat raise after getting stuck during the night, but could have done without spending £35 of my maternity pay on it at the time.

Some people find taking supplements eg fish oils, glucosamine, rosehip helpful, along with cutting back on processed foods (fallen off that wagon multiple times).

I have been back at work full time since ds was 7 months old and it has been tough at times, but I am getting there and that is without being on methotrexate as I'm still bf ds as you cannot take it whilst bf, pregnant or trying to conceive (or for 3 months after coming off it for both men and women). Bang goes giving ds a sibling!

I do get pissed off by my GP at times as she says that I have to make allowances for my disability, but she is pleased by the progress I have made and by how near normal my life is. WTF! I have RA, I am keeping active, I am working full time and will not be labelled by my disease. Did I mention I was stubborn........

Vole I have Lupus and Fibromylgia, diagnoissed Lupus 7 years ago, Fibro, 2 years ago, you know some thing, being stubborn and bloody minded, is the best thing

Hasn't stopped me Childminding 7 kids, 3 under the age of 2, full time and that is at almost 50.