What are your views on your RA please!

[zen4]

I am writing a book about my 50 years with RA and I wondered if anyone can help ? I am thinking about how treatments surgery and other things have changed during this time and it would be interesting to hear your experiences If anyone has time could you kindly let me know when your RA started and when you were diagnosed. what age you were then, which medications you have taken in order. any ops you've had and when and also a bit about the impacts on your life . I know its a big ask but it would be great to have other experiences Thank you so much

[helenlw7]

That sounds very exciting.

I was born in 1955. When I was a teenager I had awful joint pain so my mum took me the family gp. He said I had growing pains!

When I was 40, in 1995, I had really bad pains in my shoulders, so I went to see my gp in Birmingham, who asked how old I was. When I told him I was 40 he told me my age was why I had pains in my shoulders. I was absolutely fuming! The most annoying thing is that that gp is now the rheumatology specialist at my current surgery!

I was finally diagnosed in 2004. It came quite suddenly. We’d been on holiday to France for the October half term. We’d gone on a walk on the last Thursday of that week, and when we got back to our bite, I sat down for a cup of coffee, and my knees and hands got so stiff I had real trouble doing anything.

When I got home I saw my gp, and then my first rheumatologist. I has x-rays and blood tests on that first visit. It’s hard to remember the order of medications, but I’ve been on methotrexate since about 2008. I remember taking sulfasalazine and leflunomide as well as biologics - Eteneracept which worked for about 10 years, then Adalimumab which didn’t work at all, and finally Cimzia which I started in April 2024, and am still injecting.

The only surgery I’ve had is straightening some of my toes.

Please don’t hesitate to get in touch with me if you want any more information.

[zen4 in reply to helenlw7]

Thank you for your offer of help. Interesting that your experience when young was the same as mine I had a really bad first flare and it was so obviously RA but it wasn't picked up or if it was no-one told me ! I just used ibuprofen.Same happened 10 years later but I really pushed then for a diagnosis and got one I shouldn't have needed to do that The impact on upur life?? Joint damage??

[helenlw7 in reply to zen4]

In working life I was a primary school teacher, mainly to 4-5 year olds. I used to run 3 times a week with my youngest son. That had to stop even before my diagnosis because I just couldn’t run, or even walk any distance. I couldn’t sit or kneel, which really affected my work because reception teaches spend most of their day on their knees, and I couldn’t reliably get up again. Whenever I had to attend a meeting, I made sure I was last to stand up because my joints stiffened up which made movement difficult. I was sent to occupational health, who decided that to continue in the job, I wouldn’t be able to do play ground duty - the RA had affected my balance, or teach PE or swimming.

My rheumatologist says most of my joints are ‘knackered!’ Her words but I do agree! Both of my shoulders are badly damaged, as are my knuckles, ankles and knees, and some vertebrae in my neck and my lower back. I haven’t had any surgery, although I was due to have a knee replacement last June. This didn’t go ahead because I was in hospital with another issue.

I also have interstitial lung disease, thought to have been caused by the RA.

[HappykindaGal]

How interesting!

I was diagnosed in 2018. I went to Portugal for a month and all well. Couple of days in my knee was painful. Friends came to stay, one a GP who went to pharmacist to get stronger ibuprofen. By week 3, I couldn’t drive, couldn’t get up from the sofa and came back in a wheelchair. GP knew almost straight away. Blood tests and GP called rheumatology and gave me steroids (which were amazing!).

Saw rheumy 3 months later and was prescribed mtx and sulfasalazine. Continued steroids. Made three attempts to come off steroids and finally succeeded when was prescribed benepali.

Probably genetic and due to high levels of stress. I’m adopted but discovered my brother has psoriatic arthritis and biological mother had rheumatic fever when she was young and had part of her lung removed.

Now, quite a lot of damage has been done. Not very mobile as right knee is bone on bone and damaged cartilage etc and left ankle has multiple bone spurs and damage. So unfortunately pretty unstable as opposite limbs. Just started Mounjaro in an attempt to lose weight and relieve the joints.

My life? I run two businesses so don’t have to physically go to a job neither do I have fixed times. Which is good. Not so good is high stress levels of running a business, managing employees and cash flow. And no holidays or sick pay 😀

Has life changed. Yes, very much. I’ve just moved house to a ground floor apartment which has made life so much easier. My social life has shrunk and my world has shrunk definitely. I have no help as live on my own.

But it’s ok as we have to adapt to the hand we’re dealt. And life is still good. Just different.

Think that’s it. Good luck with the book writing. I’d love to see it when it’s ready

[zen4 in reply to HappykindaGal]

Interesting You use a similar quote(the cards your dealt) as I did to end my last self help book published 2006-2012 and I'm going to use it again! Sorry you have so much damage considering you were diagnosed quickly and put on steroids and DMARDS promptly Have you has a knee replacement? Sounds like you need it. The ankle may fuse itself and then be more comfortable That happened to me. Maybe you could run one business and claim PIP and Universal credit or similar Work is good but too much stress is not!Glad you are one level It does make life easier Injope you are able to keep up some social life

It really helps us to relax and have fun but you are doing so well on your own Thanks for sharing

[Brushwork]

It was soon after my 40th in 1996, and began with pain and lack of mobility and strength in my shoulders. Suddenly, I struggled to put the washing on the line. Only one shoulder at a time though, it moved after a few days from one to the other and back again.

My GP referred me straight away, but before I saw the Rheumatologist, the roving pain and stiffness had begun to tour my body, hands wrists, feet and ankles. The Rheumy said it was palindromic and prescribed Hydroxychloroquine while waiting for blood tests. He told me it would either develop to full blown RA, stay as it was or hopefully, go away. My blood tests confirmed I was very likely to have severe RA. anti-CCP and RF very high (Anti-CCP quite new then).

I had been vegetarian since I turned 30 and had always exercised. The pain and stiffness got worse but my flares didn’t last too long. I managed quite well till I turned 50.

Menopause was dreadful and RA progressed as did medication. I was put on Methotrexate and that wiped out 3 to 4 days of every week for me, it was awful. I hit rock bottom, very depressed and not able to function very well. It became clear that the medication was worse than the disease! I then went through leflunamide and sulphazalazine, neither worked and both brought side effects. I developed Sjogrens and life was pretty rough at times.

I moved and changed rheumatologist, was put on Methotrexate by injection in the hope it would not have the same affect, it didn’t work. Then I tried biologics, and had steroid injections to get me through… after loosing hair, getting rashes and one simply not working at all I was put on Tocilizumab. Bingo!

In amongst all of the above, I tried herbal medication which did not work. I studied and researched and changed my diet to completely plant based, which did help. I soon realised that some foods had a big impact on my disease and overall well being,

The impact of RA and Sjogrens on my life has been significant. It affected every aspect of my life, it has limited what I can do but I realise that I am resilient, can tolerate considerable pain and that making every day count is the only way. A rheumatologist once replied to me when I’d reported feeling quite well - “enjoy and make the most of it, while you can”. It was the best piece of advice I have been given,

[zen4 in reply to Brushwork]

Hi There and thanks for sharing.You have been unlucky with so many drugs not working or causing severe side efects I too tried lots of different complementary meds and an elimination diet. I think that some foods are worse for increasing inflammation and a vegetarian diet has some scientific backing and is helpful as long as you get enough iron but I'm sure you know that.You certainly sound resilient and that advice from the rheumatologist was good At least there are more treatment options now and I'm glad that you've found Tocilizumab

[LakesideDave]

I'm 62 & was diagnosed back in 1993 . I was a busy young Dad & husband, working contract work in a office. Prior to that from leaving college at 18 , I worked in Sales from being 19 .

Back to 1993 , everything was great until over a few days, I was in pain in my joints. Which ended up with being off work in the most pain and not being able to get out of bed. After my GP suspected Rheumatoid Arthritis & referred me to the Rheumatology Department at the hospital.

It was going to be 3 months before I was seen & the GP insisted Pain killers and over the counter Anti inflammatory tablets would help.

This was March and I couldn't return to work & I was concerned what was happening!

My Dad approached the Rheumatology Specialist at his private Surgery.

I was seen the following week, and after lengthy consultation & blood tested diagnosed with Rheumatoid Arthritis.

He said this flare up & blood results along with X rays showed I'd probably had this a decade or so. Previous suspected sports injuries & similar felt exactly the same, but only lasted a few days. But the major flare up and diagnosed condition would now need medication for life & alot of changes.

After a steroid injection and starting a mixture of medication,

Sulfasalazine 500mg tablets

Dihydrocodine 30mg tablets

Diclofenac tablets

Omeprazole

This got me back to work after a couple of weeks of starting.

Over the next few years my medication didn't change much & I carried on working until 1997, by 2000 there were ups and downs, part time agency work. Adding Tramadol capsules & Steroids every 4 months.

Unfortunately after 3 years working in Security & Customer service, I had a flare up that ended up with me being off work for 6 months.

My Manager and Employer were great but couldn't keep me on the sick, longer than 6 months.

So I was retired on medical grounds, ended up on Disability benefits which were for my Condition & for life .

Twenty + years on , I'm happily remarried after my first marriage ended because we argued, grew apart .

My condition remains active but luckily my medication has made it able to live a happy life with my wife & extended family

I've had foot surgery back in 2018 which has been a game changer .

Hopefully this is what you wanted and feel free to get in touch if you want.

David Kaye

[zen4 in reply to LakesideDave]

Thank you for your reply Its nice yo have a male perspective! Less men are diagnosed with RA though. It's a shame you had to use a private route for your diagnosis but I suspect this is happening more recently I had to have a private consultation when I had urgent need for a cervical fixation due to pressure on my spinal cord. I was losing sensation in my hands yet still I could not get an NHS appt. I waited and rephoned 2 or 3 times but in the end I found my consultant in a private clinic and saw him there 10 days later He was disgusted that I had to take a private route when the op was so urgent and he got me into an NHS bed 4 days later for my op which was successful

You seem to be managing better in the last 20 years. Its a shame thst you had to stop work though. I am so glad that your foot surgery went well and has made life easier

[tinlizzie]

Hello there, always interesting to read others' RA journeys and how treatment has developed over time.I developed 'very aggressive ' seropositive RA six weeks post natally in 1972 with my first baby, aged 26, diagnosed 15 months later.

Treated wIth drugs available at the time starting with gold injections which unfortunately quickly caused severe neutropenia. After 40 plus years and many DMARDS and biologics plus steroids I appear to be in remission thanks to Rituximab. However, my body is very damaged and I've had over 25 replacements and fusions and 15 fractures which are due to osteoporosis.

I use a wheelchair outdoors but can walk in our bungalow. Disease and drugs have left their legacy but I'm still here and very fortunate to have a wonderful family and friends. I've adjusted my expectations along the way and adapted life to what I can manage. It's been hard but there is always joy to be found in the little special moments.

In rheumatology clinic I often get the comment that they don't see damage like mine any more and I rarely see other patients in wheelchairs which is really encouraging. Never give up hope!

Thank you zen 4 for posting this.

[tinlizzie in reply to tinlizzie]

PS : if you would like a list of my medication and surgeries for your book, do PM me. It's a bit long! Lots of luck writing it x

[zen4 in reply to tinlizzie]

Thanks Not quite decided yet jow I will use the replies but will update with a new post later

[zen4 in reply to tinlizzie]

Thank-you so much for posting You have had a long journey and I'm sorry you have so much damage and you've certainly had a lot of ops too My RA started in 70s and gold was around at the time Sounds strange hearing about it now I found a quote saying how toxic it was! My RA switched off until I had babies and then restarted around 5 months after each birth Pregnancy is known to cause this and I wasn't diagnosed and the meds weren't safe then if I had been You seem to have coped well with all the changes you've had to make and I hope your meds are working well now. I have a mobility scooter if I have to walk much outside It gives me a chance to have holidays and days out.

I think those of us who have had long term RA are interesting to younger consultants who don't often see this damage nowadays which is wonderful My surgeon who did my elbow replacement last year said the same

Hope you continue to find those joyful moments

[jonsib]

Hi there, good luck with the book writing.

I was diagnosed in 2013 when i was 32, nearly 44 now. It's only in the last couple of years that i have realised it was triggered by extreme stress at the time, when planning our wedding. My in laws thought that every decision should be what they want, not what me or my husband wanted, because of this i cannot look back on our wedding day with fond memories. Despite this we are very happily married. I also have relatives who have had RA.

To start with I only had pain in the hands, my GP initially thought i had carpal tunnel, referred to Rheumatology who then diagnosed RA. Because we wanted to have children, the Rheumatologist started me on hydroxychloroquine, which i had no issues for years, then added sulphasalazine, then MTX. Only recently i have had to come off hydroxychloroquine as it was affecting my heart. I didn't get on with MTX, so stopped. Leflunomide was added, but had to stop as it was affecting my platelet levels. I am on the maximum dose of sulphasalazine and waiting to start adalimumab, hoping for this one to work.

These days pain moves around different joints in their turn. I have no idea from one day to the next which joint is going to be affected next. I try to keep reasonably active, by walking the dog and a weekly gym session. Over the last two years i have managed to lose 3 stone. We have a 9 year old son, so i don't have much time to take it easy, but i manage to muddle along. Luckily so far i haven't needed any surgery.

It has been nice to read other peoples experiences too, thank you for posting.

[zen4 in reply to jonsib]

Thank you for taking time to reply Its interesting about the stress. I was never sure whether it was a factor for me when my RA started but genetic disposition also plays a part too and other triggers like smoking and physical trauma You seem to have been fairly lucky with your meds but I hope adulimumab is successful now The fact that the RA hops around does make planning difficult but is often the way with RA I'm impressed that you lost 3 stone and that will really help your joints Dog walking is great for exercise as it really gives you a great reason to walk regularly Hopefully being diagnosed since all these new medications started you will never need surgery Good luck

[Artemise]

Hi - sounds like an interesting and useful project. I was first (eventually) diagnosed in 1960 with Stills Disease and the long journey has continued... I'm happy to answer any specific questions. I recently published a graphic novel for children published by David Fickling Books) called Tosh's Island, a semi-fictionalised story of my childhood experience with Stills, which gives an insight into those early challenging days and which might be of interest/use...

[zen4 in reply to Artemise]

Thank you Your book sounds a great idea I will have a look You have obviously been living with Stills for a long time. I hope you found the writing therapeutic

[Artemise in reply to zen4]

It was hugely so and very rewarding on so many levels. Wishing you all the very best with your project too.

[bienassis]

My experiences as follows:

First symptom, painful swollen knee, 3 months after my daughter’s birth in 1960 (I was 25years old). GP diagnosed Housewife’s Knee; prescribed an elastic bandage.

After 7 years of the swelling and pain blowing hot and cold, a severe flare in knee, hands and feet led to the correct diagnosis - RA in 1967. Prescribed Gold injections and heavy doses of Aspirin.

But continuing severe pain in the knee led to a surgical Synovectomy in 1969. In 1970 the continuing pain resulted in 3 weeks bed rest in a London Hospital’s Rheumatology Dept. Amazingly it worked well and included more Gold injections. The Gold regime continued until end of the 1970s when the Gold failed and a flare led to prescription of D-Penicillimine in 1977. This drug resulted in a nose- dive of my platelets so was stopped. Aspirins and other DMAIDS were my only drugs. But my life wasn’t affected as far as mobility was concerned.

Surgery on right elbow in 1980 - removal of Head of Radius. Otherwise feeling well and still mobile - walking normally. In remission.

1988 - consultant decided to start me on Azathioprine - continued well and mobile. My hands were beginning to be seriously affected - in 1994 surgery on left hand: MCP sialastic joints.

1998 - a squamous cell carcinoma on my nose decided my consultant to stop Azathioprine and start Methotrexate (7.5mg). Some research had revealed that Azathioprine used long term could cause skin cancers.

2002 - cortisone injection in left knee; much talk about knee replacements at this time. Offered the two replacements at a 6 week interval. Decided against it - I was still walking well, and felt I had nothing to gain. I also felt it was rather experimental at this stage - they needed the surgical experience more than I needed the replacements. I didn’t regret the decision as I entered a long period of remission until two bad falls in January 2018 and August 2019. I spent 6 weeks in hospital after the 2019 fall. The trauma triggered off a severe flare, and In 2020 I started my first (and last!) biological - Remsima (a biosimilar of Infliximab). Side-effects including diagnosis of Heart Failure stopped that drug in 2022.

Methotrexate (now by injection) continues to be my only RA medication (with Folic Acid). The highest dose of Methotrexate has been 15mg for a short period. Mainly 10mg has been the dose - but now for the past year I have been taking 7.5mg .

Conclusion: I shall be 90 in the summer, and consider myself to have been very lucky. The lack of early diagnosis and the poor treatment available could have meant serious deterioration much earlier. In spite of long-term damage I’m still on my feet. That must be Luck! If it is of any significance, my maternal grandmother was very crippled by RA - diagnosed in 1930 she was dead of pulmonary disease in 1939 - at 59 years old. My mother escaped it.

I hope this short account of a long-term disease has been of some help in the research for your proposed book.

My Very Best Wishes for publication!

Bienassis

[tinlizzie in reply to bienassis]

Dear Bienassis, love your user name as I'm a bit of a francophile, so hope it indicates your current situation! It sounds as if you have done really well despite the odds stacked against you.. We are all unique but have many similarities in our RA journeys.I'm interested in your long remission, were you still on methotrexate during this time? I became intolerant to it over time unfortunately, also had anaphylaxis to Infliximab on eighth infusion. We all react differently.

I also have had malignant melanoma and eight basal cell carcinoma skin cancers, due more to my immune system than any sun worshipping!

So far so good though. I wish you well and Happy 90th this year!

[bienassis in reply to tinlizzie]

I‘ve never at any time stopped taking the Methotrexate. Once, I did ask my GP what he thought about stopping it since I was going through a long term remission, and he said “No, definitely not”. And suggested I stop taking any painkillers if I felt I could do without them. He thought if I stopped MTX and then had a flare, I might not respond so well on restarting the MTX. That, it must be said, was years ago, and the thinking may have changed since then. But a remission doesn’t mean the disease has disappeared.

Yes, I am a Francophile, but have not been able to visit France for many years. And, sadly, many of my French friends have died over the past few years - all, except one, were well into their 90s. The name, Bienassis, I took from a château of that name in Brittany! I still read French but my spoken French has deteriorated from lack of use.

C’est la vie!

I’m sorry to hear of your troubles with skin cancers - so many! You must always be on the “qui- vive” with those little horrors.

Thank you for your birthday wishes - I never thought I would make it this far!

Bienassis x

[zen4]

Thank you so much. It is very interesting to see how the meds have changed and you're right the surgery has become so much better in the last 20 years You obviously have some damage of joints but seem to have managed extremely well Your first set of DMARDs are never used these days but you obviously have a strong mind and body and are very resiliant! Also keeping moving in ehstecer way you can really helps I am sobgladvthstbyou arexatill on your feet!

[Vixen2]

Hi Zen4. I’m 53. My RA started when i was 21. I caught an STI from my husband. (I had been a virgin when i met him). He very kindly gave me Chlymidia & because i have the HLB27 gene. This developed into RA. I suddenly got awful pain in my right big toe, left shoulder & really bad conjunctivitous in my right eye. Which then progressed to Iritis & i also have Glaucoma! I was in hospital for a week. The minute i went home. The inflammation spread to every single joint! The pain was excrutiating. Overnight i’d become a 90yr old, using sticks. My husband became my carer. My lovely mum was a nurse. She was amazing. Caring for patients at work. Coming home to nurse me! I remember my husband helping me to the bath. I could hardly get in. I remember panicking. I could hardly get up to turn the taps off. I thought i was going to drown! This was way back in 1992. I was on sulphasalazine, Indocide, steroids, Co-Dydramol & Co-Codamol. My head got so high, i couldn’t recognise my brother in law. I couldn’t read or write. I felt like a zombie. They lowered my doses. Very scary!! Then i was getting inflammation in my eyes. So i have often had to have steroid injections in my eyes. I’ve had 2 cataracts removed. 1 when i was 26 & 1 when i was 40. I’ve had lens replacements injected into my eyes, as my vision was really bad. Plus i’ve had a Trabeculectomy in my right eye. The Glaucoma was getting worse. The pressure was much too high. So they had to put a catflap in, to drain the fluid. I’m often getting bad flare ups of Iritis. I’m currently on drops now. Have had a very painful flare up. Stress makes things much worse.

I also had to have a serious op on my big toes. They had to be fused, so as to help with severe pain. Mytoes still look deformed. Eventhough i had the op about 25 yrs ago. I had to wear those big boots for a couple of months. (At least i always got a seat on public transport!)

For the past 20 yrs i’ve been having 6 weekly infusions of Infliximab. This is meant to help the eyes too!

RA is an awful, chronic disease. Although treatment has improved alot. It cannot help with FATIGUE! I’m so tired of being tired!!!

Good luck with the book & contact me if you’d like more of my KNACKERING, EMOTIONAL story!