My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

Rheumatoid arthritis people - would like to meet you

14 replies

sunshinealwayscomesback · 11/05/2022 21:53

Hi, I was diagnosed with RA a year ago and it's been ups and downs. Horrible summer last year but after a steroid injection and a build up of methotrexate everything was normal for months and months. I almost forgot I had it (wishful thinking). Just recently I've had two horrible flare ups which have shocked and frightened me. I've just had my methotrexate upped plus another steroid shot and I'm feeling really good again.

It would be good to connect with other people with this condition and share some mutual support. I'm 46. I want to continue to be as positive as possible although it's hard when things feel out of control.

Thanks

OP posts:
SpindleInTheWind · 11/05/2022 21:57

I have psoriatic arthritis which is a similar inflammatory arthritis. My toes and fingers are really hurting tonight. Time to warm them up.

CherryRipe1 · 11/05/2022 22:02

Sympathies op. RA is a horrible disease & people think it's just arthritis-NO it's systemic. There are RA forums on Health unlocked that might be useful and Stuffthstworks. I have a connective tissue disease too so know the unpredictability of them. I actually know 6 people with RA & all have very different severities and treatments.

sunshinealwayscomesback · 11/05/2022 22:02

Does heat make much difference? It is such a comfort thing anyway. A hot bath always makes me feel a bit better. Hope you get some respite.

OP posts:
sunshinealwayscomesback · 11/05/2022 22:03

Thanks CherryRipe, that's really helpful. I'll look them up. It does seem such a random thing with people having very different experiences.

OP posts:
SpindleInTheWind · 11/05/2022 22:24

sunshinealwayscomesback · 11/05/2022 22:02

Does heat make much difference? It is such a comfort thing anyway. A hot bath always makes me feel a bit better. Hope you get some respite.

I think it can do for me some days - as you rightly say, it's a comfort thing.

TheRoadToRuin · 04/06/2022 13:56

I was diagnosed about 6 years ago.
It's depressing when it's all been under control and then flares up again.

DorisJoy · 04/06/2022 14:39

Hi, I’ve had RA now 12 years. The first few years are difficult and you’ll find you may go through a few drugs until they find what suits you or if it doesn’t ease they add a Biologic drug (side effects are not as bad as the old style meds). Learning to pace myself with everything I do has helped. Heat helps but I’ve also found bio freeze/deep freeze helpful too on joints. Lots of info on the versus arthritis and NRAS websites and as someone else said the health unlocked forum is helpful too.

scraggadoo · 07/06/2022 15:23

Hi @sunshinealwayscomesback sending my sympathies. I was diagnosed around 12 years ago and have tried a few drugs with mixed results. I am about to start with Jyseleca subject to the screening going OK. I am also 46 and whilst some days it is overwhelming and I am tired/ struggling with one of my joints, other days I feel fine. It is a journey of highs and lows! I do find a bath helps and always makes me feel better. I hope you are doing OK 😘

sunshinealwayscomesback · 12/06/2022 18:37

Thanks for the replies. I think I'm starting to take in that there are going to be tough times along with the good and hopefully knowing the tough times will end will make them easier to bear. Learning to pace myself sounds important - I've always been a high-energy kind of person.
It's nice to hear from others, thank you.

OP posts:
Hyvsvaar · 18/06/2022 20:45

DIDNT realise there was a AD section
ive had terrible arthritis in my hands for a long time coupled with anaemia (not relevant to AD but adds to the extreme exhaustion)
after 18 months of splints/X-rays/us neproxen and steroid injections started methotrexate…
it was amazing for the pain but absolutely exhausted and my white blood cells/neutrophils? plummeted to 1.2…ear infections/mouth ulcers/covid after 2 years!!! and had to stop for nearly two months until my WCS came back up
I need to start taking my sulfasalazine prescribed a week ago by I’m still exhausted

have blood tests every 2 weeks

I have stopped working as I can’t do my job and balance being mum to 3 teenagers/runs household in all sense of the meaning

for me this is more than a bit of arthritis and most people are completely unsympathetic as they think my hands are a bit sore but I feel my whole body is affected, probably compounded by covid too

CuriouMum · 08/07/2022 08:08

Acupuncture and herbal treatment are effective for rheumatoid arthritis and other autoimmune disorders. It's best to speak to an experienced TCM (Traditional Chinese Medicine) practitioner

wonkylegs · 08/07/2022 08:16

Hi I would also recommend connecting through the chat boards on versus arthritis
When I was first diagnosed they were a lifeline for me.
I was diagnosed at 19 and went through an acute phase of illness, almost unable to walk or function which was very frightening. Tried various drugs but methotrexate (mtx) was the first one to make a real difference. Unfortunately you will probably have to tinker with your meds over the years as they can become less a effective or can be affected by other things (having to pause for pregnancy or illness)
I'm now in my 40's so have covered most of my adult life with RA, it can still surprise me but its generally under control, I'm now on mtx, a jax inhibitor and celebrex.

AddictedtoStarmix · 08/07/2022 08:16

My 23 year old daughter has RA along with a condition PVNS which causes tumours in her joints.
I really wish there was greater awareness of the impact of this disease, particularly in the workplace.
Recent gem from my daughter's manager when she requested to work from home was the classic '"you don't like you have a disability" and the "well I saw you yesterday and you looked ok".
Luckily she has the support of the Occupational health department but it doesn't stop the ignorance and the impact that has on my daughter's self esteem and wellbeing.
Anybody have any good responses when dealing with these attitudes?

wonkylegs · 09/07/2022 15:40

@AddictedtoStarmix - I generally find that its best to try not to let them get under your skin too much - she's going to be dealing with it for the long haul. So one off comments tend to get ignored unless I'm in a bad mood when I may snap back but people you regularly interact with it can be worth trying to educate.
Saying stuff like "that's a regular mistake with RA but it's a long term invisible disability that affects all ages and which has good periods and bad periods so can be particularly hard to deal with"
It still often goes in one ear and out the other but for some people if you tell them enough it sinks in. I have long term friends (I was diagnosed at uni and am now in my 40's) who now get it but some who are still fairly oblivious. I once had a great boss who got it because his wife had it but the other bosses took time to understand it, eventually they were good too though, they just didn't understand because they didn't know anything about it.

Please create an account

To comment on this thread you need to create a Mumsnet account.