Never ending story...: Hello, newbie here...I'll try... - NRAS

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Never ending story...

moon10008 profile image
37 Replies

Hello, newbie here...I'll try keep it brief....started with multiple joint pain last Oct, diagnosed 12th March 2021 with RA.

Started on Sulfasalazine and Naproxen back then along with a steroid depo, continued to up the dose till max, another depo, put on oral Methotrexate, again upping the dose then to injections.

Now I am on 6 Sulfasalazine a day, 2 Naproxen, 25mg Methotrexate weekly, co-codamol every 4 hours again now, had 4 depo injections since March, last one 18th Oct, which feels like it's wearing off again. Seems like it doesn't work as well on each one and no longer lasts as well as it did.

I was an artist for a living pre Covid, and now the RA prevents me painting, as it is rampant in my hands, right especially, my fingers don't really bend anymore and pain constantly, I think this is permanent now, as it doesn't change.

My mood is very low, ended up crying to my Rheumy nurse on the phone appointment 10 days ago. The pain, the stiffness, (hands, neck, shoulders, jaw, knees, ankles...which does vary, spin the wheel of doom) the constraints every minute...I am REALLY losing the will to live, my nurse has RA and says not to give up hope.

Shes 99% certain I'll be put on self injection biologics, my next appointment was cancelled from 21st Dec and moved to 13th Jan.

So basically does anyone have a similar experience with meds and a good outcome in the end please? I would appreciate some realistic expectations to hang onto, that I may get some quality of life back? Or not? I am so tired of hoping the meds are going to work to find they are not working as well as they hoped.

I have tried all sorts to help, gluten free, fasting, yadda, yadda...which am sure many of you have too.

Any honest realistic hope would greatly appreciated.

I hope you all have a pain free day, and things to smile about....thank you in advance.

Nikki

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nomoreheels profile image
nomoreheels

Hiya Nikki, welcome. You have been struggling. It's not uncommon, though what may not have helped is the delay in diagnosis, 5 months is quite a while & in the meantime no treatment has meant that the disease can take longer to bring under control being very active. What doesn't help generally is no DMARD has an immediate response time & why the steroid injections were necessary. They don’t work for me at all but oral prednisolone does, I have been on a maintenance dose many years. I wonder if they would work better for you until your next Rheumy appointment? They may bring some relief at least.

Take that biologics have already been discussed as a positive. Many of us have to jump through hoops & work through other DMARDs to be considered but we each have different severity at onset, some creep others gallop!

We do have some members here who are artists, some make their living from it. Maybe if they see your post they'll be along to share their stories & even give some ideas of how you could adapt as they have.

Don't give up hope. Aside from flares not being controlled is the worst of it. As you'll have come to realise in the short time you've been diagnosed there isn't one med that works for everyone, we need to try them out before we know if they work best for us but there will be one, even though it's understandable why you feel lost & at the wrong end of that tunnel just now. You may feel you're alone, you're not.

Take heart too that whilst this forum is a wonderful place to be in touch with others many are struggling, it's not representative of everyone with RD. I hope you'll find it helpful though, connecting with those who understand how it is to live with it, because we do & you will too given a little time & patience. It demands patience. Maybe a look through the NRAS site would be of help nras.org.uk & nras.org.uk/information-sup... There's always the helpline too if you feel if would help 0800 298 7650 Mon-Fri from 9:30am to 4:30pm 😊

moon10008 profile image
moon10008 in reply to nomoreheels

Thank you for taking the time to reply, it's much appreciated. By nature I tend to research everything to within an inch of it's life.

The lack of sleep, pain waking me up in my wrists, centre of palms, back of hands and shoulders doesn't help the low mood, it just seems there's no light at the end.

Am pretty pragmatic, I have RA and pretty certain life won't go back to how it was, running, cycling, painting 14hrs a day, dancing etc...I do try, but every step forward there's another two backwards at the minute, and this latest cancellation just floored me, had quite a few along the way.

I still think my Rheumy team are doing their best and I just wonder do I have unrealistic expectations of at least relatively pain free? And a quality of life to look forward to each day instead of dreading getting up and the two hours it takes to be able to get even dressed.

I'm sorry for moaning, I know there are many with similar, I just feel very alone even though my hubby is good, folk without just find it hard to understand it.

Thank you again.

Nik

nomoreheels profile image
nomoreheels in reply to moon10008

Do keep trying to do all you can. The Mediterranean diet is recommended. Some react to the nightshade family of veg, though I don't but it might be worth trying leaving them out if you don't already to see how you respond. I've been on various different pain relief & NSAIDs through the years. Naproxen was one which stopped working but etoricoxib (a COX-2) has worked well for around 7 years now. Both could be reviewed by your GP or Rheumy Nurse if you explain your Rheumy appointment has been put back. If they're not aware they assume you are ok so don't be afraid to make contact & say how things are. I'm not giving advice here but since I started taking amitriptyline for muscle problems I sleep so well. Prior to RD I could sleep through anything but joint/muscle pain was causing so much disruption I was grateful for the additional side effect of it.

Don’t be sorry for moaning. It helps to get it out & as I’ve said we know how it is, we've all been there & it is hard but it won't always be like it is just now, promise, so hang on in there. You seem to have the right attitude. You're your own best advocate!

Pipefiter profile image
Pipefiter in reply to moon10008

Hello NikkiI to have suffered the long agony of finding the right cocktail of drugs to control my RA. It took nearly two years of suffering before the right drugs were found. I also didn’t want to live anymore, the sleepless nights , the constant flares. But have faith and hope because there is something that is going to work. I take Olumiant, Leflunomide and Hydroxychloroquine. This cocktail is my answer. I still have the occasional flare ( usually when the weather changes) however they only last for a day and the pain is tolerable. So hang in there there is a light at the end of the tunnel

Pipefitter

sylvi profile image
sylvi

NMH has some sound advice and she is a veteran like me. I have been through the wringer this year over drugs. Got took off Mtx due to ground glass appearance on my lungs. I struggle with biologicals as everytimme i take them i get a chest infection. so know your not alone and look at NMH advice and ring the NYRAS as they will be able to point you in the right direction.xxxxx

moon10008 profile image
moon10008 in reply to sylvi

Thank you, I may do that, give them a ring. My Rheumy dept has a helpline, and to be fair they are very good, but very short on time. I try not to ring until things are so bad, as it just seems things should be working, and yet am going backwards again.

I hope they get your meds settled, so far my tolerance for meds has been ok, just very sick with oral Methotrexate.

Thank you again.

Nik

sylvi profile image
sylvi in reply to moon10008

Nik mine was until the last three years and my health has gone downhill fast. The worst was when i had sepsis in June the very morning we were due to go away on holiday. I was lucky though i only four days in hospital and two of them was in ICU. I am hoping things are settling down now. Fingers crossed. xxx

Neonkittie17 profile image
Neonkittie17

Sorry to hear this. Very similar in so far as I’m an artist whose fingers have had a lot of joint issues and swelling. It improved so much once I was on meds that worked enough. I found/find pacing whatever else I have to do and saving my hands for the art helped/helps. I did two art degrees following my diagnosis as I gave up full time work, so it didn’t hold me back as such but caused some restrictions until my hands calmed down. The fingers/knuckles were very swollen. I hope you can soon find a med to control yours. If you’ve been on Mtx a while now without success, I think your nurse is right re the biologic. That could make a big difference for you. 🙏🏻 Good luck. 💗

moon10008 profile image
moon10008 in reply to Neonkittie17

Hi, thank you for replying. I have tried painting the way I used to and the pain is too much to hold a brush despite adapting and input of OT.

I was considering going to do my degree in Sept 22, even went for a look around as at that time around 4 weeks ago the depo was making things possible, now it seems so far away as am back to pre depo difficulties. The course is one year as a fine art top up to my HND in Industrial Design. I have while January to apply, but just seems pointless when I can't even get out the house till 2/3 hours after waking.

I had hope then it would be getting under control, but am back in RA jail .. so frustrating!

Thank you though for giving me hope that eventually it might be possible...and congratulations on your two degrees, that's inspiring!

Cheers

Nik

Neonkittie17 profile image
Neonkittie17 in reply to moon10008

I’ll reply later Nik from a personal stance as an artist who studied two very physical art degrees for many years whilst RA was quite active. Frida Kahlo was also a very inspirational disabled artist due to her accidents but the one who always springs to mind for me is Renoir as he was crippled with arthritis from age 50 and managed to produce outstanding work. He had brushes tied to his coat sleeves. Look at Matisse too and his collages he did from his wheelchair. I did an assignment/seminar on my BA FineArt year 1 re art and disability. Many, many disabled artists. I’ve got a couple of inspirational links here for you too - modern artists with disabilities and a Renoir link.

boredpanda.com/inspiring-di...

bmj.com/content/315/7123/1704

Black and white photo of Renoir painting
Neonkittie17 profile image
Neonkittie17 in reply to Neonkittie17

Renoir and his arthritis

Black and white photo of artist Renoir
Neonkittie17 profile image
Neonkittie17 in reply to moon10008

Hi again. To talk re studying for art degrees etc and rheumatoid, I have quite a bit of experience there. I was made aware of student support early on when I went to college to study fine art/printmaking. (Originally a graphic art student for 3 years in the late 1970s.) From 2004-2009 I did a full time BA Fine art and a part time MA printmaking, but actually did as many hours on the MA as the BA. I also did an year’s intensive foundation diploma prior to that. A lot of art study which I loved. Art history too.

You do not have to have a Student support helper as such following you about .. I was really against that as felt it would be hard work to organise that person as to how you wanted them, but it worked for a couple of people I knew. Not for me. I also had a blip with my thyroid being a problem as it went very over active mid BA so wasn’t easy but I did take advantage of student support being able to defer my painting module do over the summer, so that was the support help I accepted. Had I not been a very fast typist and writer of notes I may have been accepted assistance there but I know I could have written or typed as fast! The fact there was help there if needed was good to know re if you needed extra time in handing in work etc. I didn’t need anything more than to defer the painting module over that difficult summer.

When you complete your higher education forms they ask if you have a disability and if you would like to speak with student support so it could be an option for you? Have a think about it. If I had needed to use it more I would have.

As for the RA .. I was diagnosed with RA 26 years ago age 35 in 1995. I plummeted badly as it took a year to show in my blood and I lost all mobility and strength and could no longer do my fellwalking, squash, gym, running and had been a competing athlete. It hit me so very hard. I managed to come back from it but it took a good year and I had been super fit. It can hit you hard still even if you are fit/strong. I got osteo damage early from that long diagnosis time. I’ve had 3 great and very effective meds since 1995 that have lasted 8 years approximately each and the changeover times between meds have been hard but I have picked up each time and responded very well. Keeping as active as possible and doing physio and hydro were an absolute must. I hope you have a rheumatology physio you can get help and advice from. You can always apply for your fine art course and if you feel things haven’t improved enough for you ask re student support or think to take another year to prepare. It’s what is right for you at the time. I hope a biologic will improve your RA as they tend to succeed with patients who have failed dmards. It happened like that for me when Mtx failed as a solo therapy and a more powerful med was recommended to add.

If it’s fine art module you want to do then maybe some work won’t need to be done is as tight a style or technique as you’ve been used to (I understand this too as I’m originally a graphic artist .. always will be first and foremost! .. and I’m a fiddly painter and drawer but drawing and painting modules on my BA fine art taught me to do some freer styles. I always went back to the detailed work but a lot of my freer work got excellent marks and maybe a shift in styles and methods might help you? Don’t give up on your art dreams. Lovely painting. I draw and paint but long to get back to the printmaking studios. Screen printing and etching are my passion but just bought some new inks to do lino prints at home. I’ve let my art slip this last year due to shielding but intend to make it my focus now again and not get distracted. I have other plans to study again too. Could never find a tutor compatible to my subject matter for PhD but think I may have found one. I know I am very capable of that. Apologies for the length but wanted to give you much encouragement. I have worked as a freelance artist and also for an employer. Also in advertising and as a marketing manager.

helixhelix profile image
helixhelix

Poor you, sounds like you have been through the mill.

My first year (11 years ago) was horrific. And I was completely convinced that I would be in pain and permanently disabled for the rest of my life.

But no. Once I was settled on drugs things improved hugely (max dose MTX, sulpha and hydroxy) and I was amazed that things like my fingers worked again. The drugs then started to loose effectiveness and I was put on a biologic, which has been marvellous! Much better than I was before, as hardly need any anti-inflammatories or pain killers now. So don’t give up hope.

To try to cheer you up I attach a painting called “cortisone” by Raoul Dufy, which he painted for his doctor who was the first doctor to try using cortisone on RA (which Dufy had).

Renoir and Burra also had RA, and Klee scleroderma. They all continued to produce beautiful work, and so will you.

Raoul Dufy - Cortisone
moon10008 profile image
moon10008 in reply to helixhelix

Thank you for the lovely picture, I knew of Renoir and another chap, but not the others, so thank you I will look them up.

Thank you too for the hope, I started when diagnosed with very swollen fingers but much more mobility than I have now. 7 months of drugs and my hands are much worse, not so much swollen but unable to bend my fingers, very stiff and painful. Back then x-rays said no permanent erosion, not had any x-ray since, but they are much worse. It scares me that if this rate of decline continues I will not be able to use my hands. They are very weak too and wrists always swollen with weird lumps like on the palm of my hands, like a bone under my forefinger and hard tendon lumps on the third and little fingers.

It's great o hear you got more mobility, mine have just declined, no improvement no matter how much they put up the meds, depo makes no difference either.

Thank you again for your reply and the pic...my pic is a painting I did (took weeks due to my hands) to try and make the pain pretty, the brushes withering as my ability to paint seems to get further away. It's called 'Prayer Sign Positive' as it was something my Rheumy consultant pit on my first letter.

Nik

My hands with some floppy art brushes and bubbles to turn the pain into something pretty
springcross profile image
springcross in reply to moon10008

This is such a good painting. I'm sorry to hear you're having such a bad time but hang on in there, it does take time but you will get there and in the meantime, you know we're here for you. xx

nomoreheels profile image
nomoreheels in reply to moon10008

You have a talent Nikki. You'll get back to it I’m sure once things settle down with treatment. Please do share more as & when you feel the time is right.

Green230461 profile image
Green230461 in reply to helixhelix

I did not know it was a plant! What a great painting. 🌺

helixhelix profile image
helixhelix in reply to Green230461

It isn’t….but I think Dufy perhaps was comparing the wonderful positive effect that steroids had on him as just like being given a bouquet of flowers? Or was giving the flowers to his doctor as a thank you….

Green230461 profile image
Green230461 in reply to helixhelix

Thank you! Art is something I appreciate but know little about!

Green230461 profile image
Green230461

Hi moonLife will improve for you. It might take a while but the drugs are so much better than twenty years ago! Your journey will be a roller coaster but enjoy the good rides. 🌺

Mmrr profile image
Mmrr

Welcome Nikki, although it's sad you have had to join us.The mains things are...don't give up hope things do improve...and patience is required something I wasn't to good with pre RA, but have had no choice but to develop. Rheumatology treatment moves at a very slow pace.

There are low days when you might feel that you want to give up, and there are days when you feel like fighting.

For me the best strategy is kinda in between, I accept that I have RA (mainly, although sometimes when feeling better, I doubt my diagnosis 😜) and make the best of the good days and accept the bad days. That way it saves using a lot of limited energy and reduces stress trying to fight a battle that cannot be won, but can be managed.

It is not unusual to try several medications before you find the one for you, so keep talking to your rheumatology team and stay as positive as you can.

I had my first big flare of arthritis in May 2020 but it had been rumbling for years before, I had my own company where I manufactured and hand screen printed clothes. It all happened the same time covid was sprung upon us and I havent worked since.

I've been started on sulfasalazine, methotrexate but was taken off both quickly due to severe side effects and I've been on benepali biologic since January 2021.

I am just in the process of going back to my printing press and seeing how it will go. I've had a very steep learning curve, the whole "spoons" theory is new to me but really relevant.

Its only in the last few weeks my biologic has clicked in, I still get sore especially of I get mad or sad etc stress has alot to play in this.

Even though I've been fighting it I've been diagnosed with fibromyalgia too, think its quite common.

I don't know if I ever will be out of the woods but I havent had really bad jaw pain, rib pain, sleepless nights for a fair few weeks which I never thought I would ever say. It does get better x

I think we learn to adjust, take it slower on bad days and don't poke the bear! But its so different for all people, biologics I think are the way to go if DMARDS don't Work for you.

Sounds like your rhematology team are looking after you, I would ask them if you could be assessed now for biologics as it takes a little while to get on them even when approved x

Dont loose hope xx

Hi and welcome to our merry little band . So sorry you’ve had to join us.

My story …. Now know I had symptoms at least 15 years before diagnosis. Flu several times a year, fatigue off the scale, painful feet , swollen knuckles and stiff joints. Constantly dismissed by Gp who insisted I had depression or the menopause. 5 years ago saw a new gp you referred me to a rheumatologist. I started on methotrexate tablets . Did great for 2 years then all hell broke loose. Hands stiff and couldn’t make a fist . Had to wear wrist splints for the pain couldn’t walk without pain . Tried Hydroxychloroqine and sulfasalazine but was allergic to both . Couldn’t use any NSAIDs as allergic. Tried a Biologic and then Covid happened . No care during first lockdown and I was getting worse. Eventually got help in July taken off Biologic as it didn’t work and caused more problems for me . Started a Jak in December 2020 things improved immediately then had a set back as vaccines caused massive flares. I’m now back on track hands no longer swollen and are functional can walk mostly without an aid insoles help a lot having physio for my ankle as this is rather stubborn in recovery. I hope to continue to improve. It’s taken a while but I’m getting there. So will you it just takes time.

Sheila_G profile image
Sheila_G

Hi Nikki. Welcome to the group. You are going through a terrible time right now. I have been where you are and felt that nothing would help me and I would just go from bad to worse. I have had RA for over 19 years now and have been on several different combinations of drugs eventually settling down. I am not going to tell you it is an easy ride as it definitely isn't but there is light at the end of what might be a long tunnel. At one point in my life I couldn't even get out of bed without my husband pushing me up to sit then pulling me up to stand. I was in floods of tears and excrutiating pain constantly. Obviously after 19 1/2 years there is a lot inbetween but I want to tell you where I am now and have been for about 7 years now. I am in remission!!! Only taking 17 1/2 mg of methotrexate per week. My life is great, I go out walking, I play with my granddaughter, I am relatively pain free most of the time. I do get very tired and I have painful flare ups but they are mostly short lived and I have to have occasional injections but very few and far between now. You could be like me, you could get on the right drugs and once established you could be much, much better and be able to paint again. I sincerely hope so. You have a great talent and I pray you will use it again. I loved to dance. I started learning to ballroom dance when I was 10 years old the RA put paid to that until medication set in then I could do a bit. At my daughter in law's birthday party 3 years ago I did a very fast jive with my husband and I was ecstatic. I felt it the day after but I have done several dances since. I line dance and I can keep up with my 8 year old granddaughter flossing and I am 70 years old. I wish you all the very best. xx

Blodynhaul profile image
Blodynhaul in reply to Sheila_G

super to hear all that, well done xxx

Cleaner2 profile image
Cleaner2

Hello thereDon’t despair I was in a similar position to yourself (could not paint for toffee though) I started with pain in all joints very suddenly it came on over a 2 week gap just at the start of Covid.

After waiting a couple of weeks to see a consultant I was put on steroids to start with then Methotrexate 25 and Sulfasalazine 6 a day as the Methotrexate alone did not work.

I had to take pain killers all the time and got very down at the thought of this being all life was about.

No continuation of my life at all as before diagnosis for RA.

Then last August after there was no change in my inflammation markers i was offered a biologic.

I have now had 2 weekly injection which are easy for me to do and I have started to see a glimmer of improvement, and I think and hope this is the start of my life getting back to something near normal.

So please don’t give up there will be a solution to movement and pain it just takes a lot of time to find the right treatment and nothing seems to work instantly so hang in there.

Cook345 profile image
Cook345

Hi sorry to hear how RA is affecting you. I did not respond to Methotexate 20mg and hydroxychloroquine until my work sent me to OT for my hands and fingers. This was nearly two years after diagnosis. Like you I had tried exclusion and anti inflammitory diets. Although vegetarian at the time I went back to being vegan but nothing worked. The OT suggested juicing greens with tumeric and despite my forgivings I did this religiously and then I gradually noticed improvements. I could not stop medications but this juicing seemed to help. I now take vegan omega 3 and zinc alongside my medications. Our hospital does not give a lot of support or offer physio either but if you can get some it can be very helpful. I am always exercising my fingers now inflammation is down to try and get function back and slowly it is working. Good luck

Katie-Mag profile image
Katie-Mag

Hello Nik.,Sorry that you’re having such a tough time.

I’ve had RA since the summer of 2019 and draw for a living - I’m an architect.

Mtx (oral and injections) and hydroxychloroquine took the edge off my symptoms but I was still dependent on daily naproxen. The biologic Amgevita (bio similar to Humira) has however made a massive difference to me. Very limited pain, I can run again (only circa 5km at the moment) and draw happily.

I understand it can take a couple of attempts to find the right biologic for you but there absolutely is hope!

Keep going!

Kate

Sky42 profile image
Sky42

Lots of good advice here. I just want to add that when you get medication that starts to work ask to be referred to the 'mysarah' programme based at the university of Oxford. It's for hands, it's online but helped me, not least to feel I was doing something positive to help. I would also see if you can be referred to a hand therapist. Mine has been helpful with some different exercises for my wrists and grip, adjustments when things aren't so good, and advice on pacing myself. She has also given me the confidence to try things I wouldn't have thought twice about before my diagnosis.

Be kind to yourself.

Fra22-57 profile image
Fra22-57

Good morning.My health has been a roller coaster with several things added to the mix which doesn't help doctors but now I have been on a biologic things are alot better.I would cry at hospital appointments as in such agony begging for more help. The injection each week which is easy to do now helps me lead a better life.My hands now don't cease up etc.Mind you it is the 4th one I tried that has succeeded.

Bethany02 profile image
Bethany02

Hi my hand in flare at one time I had multiple episodes with variations of this where I could barely do anything for myself. I did not get on well with mtx and now on benepali and twice a day sulphazalizine still have little occasions of flare but nothing like this now so the biologics can work their magic do keep telling your nurses that you are suffering it all helps your case to move to the next level phone and ask for an earlier appointment. My nurse specialist did tell me not to leave it when I was flaring as it caused more damage. She did a few injections into specific joints for pain relief when it was bad. Ps been working for the past two years without being off work happily except for having covid

My hand in flare
bienassis profile image
bienassis

Yes, most of those diagnosed nowadays will start on DMARDs and in time add Biologics to the mix. It will all seem haphazard when all you want is relief from symptoms - but hang on in there, there will surely be something that hits the button for you.

Try not to despair (easily said, I know) but most posters on this forum have had a similar experience at the start. I didn't - but that's another story, as I go back to the Stone Age!

Listen to your Rheumy team, and I daresay there is a local Helpline at the Hospital, but also the NRAS helpline is there for you to consult.

I wish you the best of luck, and an eventual solution to your present feeling of helplessness.

bienassis x

Blodynhaul profile image
Blodynhaul

Hi Moon, very sad to hear your tale. So much of what of you say applies to me too, though my RD was diagnosed in 2000 & I did pretty well on & off for years on MTX then leflunamide till beginning of this year. Like you, hands/wrists have been the most chronic & agonising parts, but nearly every other joint too! Like you, at my wit's end this year, in daily/nightly agony & serious debilitation in many joints and soft tissue (steroids only temporarily eased some of the pain & allowed some mobility for a couple of weeks). Can't look after, nor my ill partner, nor the house, nor do any farm work. Massive change this year.

Although working farming with farmer partner, my only income was as a pianist, but fingers/hands/wrists so bad I'm lucky if I can play for a few painful minutes late at night at home once in a while as hurts so much as well as stiff & weak & fingers locking. LIke you I get swellings on the hands, especially by the wrists that come with absolute agony like broken bones/raw nerves & in fingers too & wrists themselves. Can't close hands for months now. Like you - very worried it's permanent! It took months via the Rheumy to see if the leflunamide would start to work again - not. Then tried 3 months on a Biologic (was making antibodies against it) - didn't work, more time passed being so ill & now about to start a new Jak-inhibitor on 10th Dec. As well as a range of joints, some flaring more than others some days, but all feel rotten, a lot of agonising muscle/tendon whatever pain in body, agony to turn or move or not. Can never get comfortable, & awful in bed.

Till I start the new Jak , just finished another course of oral steroids (5 weeks) that only half-helped for short time & back to the worst pain, lack of independence & debilitation again. It's so easy to be despondent & the mind races thinking I'll be in a nursing home soon! After 20+ years mainly pretty well, without noticeable damage, this year the body is changing & the RD affecting in a huge way. BUT - I still have a core of hope that this Jak will work (despite its nasty risks!) & will be so grateful if can have pain-free quality of life back. If it doesn't work, there are other biologics etc to try, but don't want to think of that yet. It's the time waiting for things to hopefully work that is awful, while living in agony & helplessness. Like you, dressing etc such a trial. I keep same clothes on mostly! though try change trouser etc, all elasticated for ease, can't do bra or buttons/zips. Pulling on /off tunics, still so painful! & every other task too. You know what i mean!

Sorry to go on - especially so morbidly! Like another said - most folk who are doing well don't write on here. Also a lot of DMARDS & biologics do really well, so there's good hope a Biologic will work for you - cross fingers (Yikes No! that bloomin' hurts!). Really sorry your painting is suffering. I can only compare your feeling of loss of a big part of yourself & frustration to me with the piano. Things HAVE to get better!

All the best best. Hope to get better feedback from you soon, though sorry the appt delayed. Roll on. Thinking of you xxx

Plumcrumble profile image
Plumcrumble

Hi, I can't really add much to the reply's already but it usually takes a while to find the right combination of drugs to make you feel better, back in the 80's before drugs were better it took a year for them to diagnose RA, my hands deviated badly and they are a bit of a mess, but a few years ago I took up watercolour paints and I manage well. keep positive, hope your feeling better soon best wishes Sarah xx

STILL-I-RISE26 profile image
STILL-I-RISE26

Hi Nikki, I had problems also with medication. Couldn't tolerate methotrexate. I am on biologic now (Etanercept) and I feel pretty good. Still tired though. I might now also have a auto immune liver disease also. Looking into it now. I am on disability. When you get on biologic you should really start to feel good. There is quite a few biologics and if the first one doesn't work as good as it should the Dr will change to another one. You will get there dear.

Hello, I aim to give you hope.Diagnosed aged 17 with Stills Disease which for me manifests as RA. At that time I could not even take my own medication and was cared for by my Mother as if I was a toddler. Once the medication worked ( over 40 years now so won’t list) I had a normal life, worked, drove, had children and even used to go to the gym. Yes I have pain and yes I have mobility issues and daft things like can’t open a bottle of water etc but the point is I’ve lived successfully with it for over 40 years. So have hope please.

Ritaritis profile image
Ritaritis

Hi pet, please don't give up but I appreciate it is hard to have to lost your ability to do your gift of painting. I was advised to drink guinness to help with low moods and fatigue, it helps me but is an acquired taste and the constant pain and issues RA brings does get us down. This site is so helpful and supportive. Keep fighting and don't be afraid to ask for advice.🐕🐕

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