Hello,
I've just joined today and wanted to say hello.
I was diagnosed with Rheumatoid Arthritis around 26 years ago, and it's been quite a journey. I've been on numerous treatments over the years, and had several surgeries. Fortunately, I've managed to keep working - although it's becoming more difficult.
I look forward to learning from other members of this community, especially how people manage health issues, families, work, and life in general.
Wendy
Hallo. You’re very welcome and hope that we can help with any queries you may have in future.
Thanks 
Welcome. We’re a friendly bunch. I’m 67 and was diagnosed with RA 20 years ago, and have now added severe asthma, bronchiecstasis, spinal stenosis and steroid dependency. The only surgery I’ve had was to straighten the toes on my left foot. I was due to have my right knee replaced in June, but the operation was cancelled because I was in hospital at the time.
I was a primary teacher and had to stop working 7 years before I planned to because of the RA and the asthma.
Thanks, Helen. You've really had a lot to deal with! Such a shame you had to give up work. At least I can work part of the week from home, which really helps.
I really loved my job. I’d done it since I was 22. The combination of the RA limiting my ability to sit on the floor or on small chairs, added to the constant coughing from the asthma (for 5 years) I decided there was more to life than work!
hi ~ I'm 69, have had RA for 4 years and also have toes on my left foot that need to be straightened . . they are getting worse and causing lots of pain on the ball of my foot. what surgery did you have to straighten them and did it help
I had a bunion on my left foot (annoying because I’ve always worn ‘sensible’ flat shoes), pointing to the left, and it was straightened. At the same time the next toe, which was bending to the right over my big toe was also broken and straightened. It had a temporary pin inserted until the bone was fixed.
A word of caution. When I went for my follow up appointment after surgery I asked the consultant if my toes would stay in this position. He said he hoped so! Apparently there is a better operation but the recovery time is longer! My toes started moving again after about 4 years later. They won’t reoperate because I’m now on methotrexate so am immunosuppressed and the risk of infection is too great!
Hi WendyB123 and welcome to the club that we'd probably all prefer not to be in! I was diagnosed over 7 years ago and have been tried on several medications since then, included three biologics. The latest one was Ustekinumab but a recent US scan of my very painful hands showed that one has also 'failed'. My Rheumatologist is now suggesting a JAK inhibitor (Tofacitinib) which I will be discussing with him at my twice-cancelled review appointment which is now on 14th Dec. I'm on Pred in the meantime to 'tide me over' - I've had loads of short, tapering courses over the years to help me with frequent flares.
I finished work back in 2019 when I 63 - it just became physical impossible for me to cope with. I'd always planned to retire at 60 when I could get my State Pension but I am one of those women who didn't know until very late in the day that I would have to wait for my pension until I was 66! I was lucky that hubby was still working, house was wholly owned and kids had flown the nest a long time ago so we managed OK by tightening our belts. I'm 67 now and hubby's 68 (still working part-time) but having both our State Pensions now has lightened the load somewhat.
I used to be a huge fan of the gym and running outdoors before the RA but now I swim because it's the only exercise I can do which doesn't hurt. Painful feet and hands put paid to anything else! I can still do things around the house and garden but have to take my time. I'm hoping that the potential JAK inhibitor will be the medication which makes things better for me all round. I'd love to be able to get out and about more!
There is plenty of wisdom on this forum and somebody will always try to help with things if you ask. Sending good luck and best wishes to you.
welcome Wendy, I hope you find the group helpful and I’m sure your experiences will be a help to everyone here.
welcome Wendy. Lots of love, support and understanding here. Well done warrior!
Thanks, Madmusiclover
Welcome to the forum, you’ve certainly come to the right place to learn more, a place we truthfully would rather not be, but good old RA has brought us all together, I’m always learning & it gives us all the support when we think we maybe should challenge an outcome, to share here can be really helpful, not just RA itself but anything that aids, supports etc. I love reading all the different points of view. Take care & a big welcome 🌸
welcome! This is the only forum I belong to. It is really great.
Thanks, smilelines
Hi Wendy. Welcome. Yes RA and friends gives us a lot to manage. Do you know NRAS the RA charity? Their website is full of helpful info. They have many booklets which cover a range of areas, including those you have asked about. And of course there is a wealth of lived experience here if you ask more specific questions. Good luck on your journey.
Welcome WendyB123! I was diagnosed almost 13 years ago. I also joined the forum this year. It's been wonderful. Hope you find it useful and uplifting when you need it. I definitely have. 🫂
Hello and welcome to this valuable site. I’m also a chronic sufferer but note my diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease. I’m 61 now but have always worked f-t until the pandemic closed the business. Wishing you good days.
Hi Wendy welcome to this friendly bunch! I was diagnosed with RA in 2013. I had worked with young children for about 15 years, a job which I loved, but unfortunately had to give up. Coupled with high blood pressure, and the underactive thyroid, I was advised not to continue. Since then I've developed Lychen Schelerosa and ulcerative colitis, had Sepsis and been hospitalised a few times, but I'm still here and still fighting! Hope you are good and can get lots of help and support here.
Hello madme1, May I ask what lychen schelerosa is, I have lichen sclerosus, is it similar?
Hi Stills, it started a few years ago and was misdiagnosed, over the phone by a particular male gp, who told me I was on the best treatment for it ie Canesten Combi. Terrible burning sensations and itching that I'd never experienced the like of before. When it still didn't go, I was sobbing on the phone, asking for help when this particular gp said to me, "Oh stop snivelling and go and buy a jar of vaseline!" Then put the phone down on me. I broke down but didn't give up I rang again and asked to see a woman gp. I saw this woman gp who told me what it was and how much itching and irritation it can cause, as well as the fact that it can be mistaken for thrush. Not thrush in the mouth but.... The only way they could make a definitive diagnosis was to have a biopsy which I did. As it was confirmed by letter I asked to see the male gp again and took the letter with me. I kept calm but he could tell that I was angry, and said I'm the case of Lychen Schelerosa that YOU misdiagnosed, if you don't believe me then here's the proof ........ his face went white as a sheet and he apologised. Again I kept calm and said, "No doubt if I hadn't pursued this, I would've been labelled as neurotic, with a condition that could've had severe consequences for me going completely misdiagnosed, when you didn't even see me!" It would've just been diagnosed as Thrush! All he could say was I'm sorry, I picked up the letter, stood and said So am I doctor, so am I! Walked out and closed the door vowing never to be seen by him again. I still get the burning, itching sensation on my stomach etc and lower down, but having a shower and putting cream on calms it down. I'll never get that feeling of is it me am I not clean etc? Apparently, that doesn't come into it, its just a factor of RA. Sorry for long post, but I felt it was important to be truthful about what can happen with this diagnosis.
Is your condition Luchen Sclerosus or something else like it or is it just auto correct?
If it’s lichen sclerosus then that’s exactly my story, years of being told it was just thrush/cystitis/thrush/cystitis. When it first started mid 1980s once I was off steroids for Stills my GP told me I was allergic to intercourse with my husband due to his PH balance! I was eventually diagnosed post menopause by s gyne specialist and the Dermovate keeps it at bay. It’s a horrible condition but quite common I believe and especially if you have other AI conditions. Ironically I was also diagnosed with Intistitial Cystitis at the same time.
I was told in no uncertain terms in front of myself and my husband that it was Thrush and it was sexually transmitted. I was told this by yet another male gp, who looked down on me as he said it. The female gp referred to it as Lychen Schelerosa. Terrible itching and inflammation down below, with a fungal effect on sensitive areas of skin.
I'm on Dermovate as well, though I only use it as and when necessary and was given a timetable of how to start usage.
They did class it as an auto immune condition.
Yes it is and once you have one AI condition you collect others it seems. The gynaecologist consultant told me IC is also connected to AI. I use the Dermovate sparingly as prescribed but it’s like a magic cure when applied and I make sure never to run out. Whenever I’m under the weather it flares up. Stills Disease gives me terrible sore throats which have never ceased since diagnosis in 1979. Often I ask medics for help with this but I’m always dismissed. This year I’ve been unwell since February with new symptoms, tests ongoing and so far Orthostatic Hypotension ( dipping BP) has been discovered . When I ask them to consider Stills Disease involvement I’m immediately dismissed with the indication I’m an hysterical, menopausal, hypochondriac woman which infuriates me. If ailments can be treated we should be allowed that treatment for QOL not dismissed by male GPs who cannot understand.
The male gp insisted over the phone that it was thrush, when I knew it wasn't.
this?
Yes, think it affects other areas as well, such as underarms and boots as well as stomach. Once you start scratching you can't stop.
Hi Wendy,
This is an amazing group to be part of and although I’m very new to RA, everyone has been so supportive and helpful.
Karen 👋🏻👋🏻👋🏻
Welcome, there's lots of info on here, and very helpful
Thanks, Seatgeorge
Hello, I have had RA for 18 years (diagnosed) I think many mores years but avoided the GP! I am the same age as you and I have managed to work since diagnosis as a cleaner ( 36 hours a week) and own a holiday let which I manage myself. The last 2 years have been difficult for me ( other diagnosed problems) and unfortunately have been forced to slow down. After a recent A&E visit with my hubby I got a good Stern talking to and I had no choice but to take notice. I do love reading posts like yours as you have still managed to keep going,although it’s been difficult. No Surgery for me, my joints aren’t too bad although I have erosive RA but I have been lucky. My hands are worse effected but nothing can be done for my right hand as I have left it too long.It’s a shame we have to wait till we are 67 for a pension!
Hello and welcome. This is a very useful and supportive safe place for those of us with inflammatory arthritis. We have a load of laughs too!
Hi Wendy,You will find this forum very helpful.Plenty of people asking for or getting advice.Welcome.
Hi Wendy and welcome! There is so much help and compassion that you will read on this. Everyone here is/has been in the same boat (unfortunately) and all are willing to help one another. I was diagnosed with RA 4 years ago, have been on Methotrexate once a week. I suppose its helping as I don't have RA flare ups as I previously did before Methotrexate, but always love hearing what others are doing for this disease and what their outcomes are as I'm always open to other suggestions.
hello Wendy......reading your post and reflecting on the forum and how it helps.........I realise that being fortunate enough to be in remission currently with Benepali......it is more of the emotional and psychological support here that really counts , especially if you live alone.....(except I have just re-homed a cat called Luna)
HelloWelcome. I've not been on here very long, but it's good to be part of a community who understand. I've had sJIA for 50 years and it's still an ongoing journey, but I keep trying and stay strong with the help of others. I hope you find it a useful forum
Hello I'm a new member of Health Unlocked.
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A new member
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