Adult Services for Inflammatory Arthritis

[HavingAMinute]

Hi everyone, previously posted in autoimmune but the board seems quiet.

I'm in a bit of a pickle and looking for some advice.

Backstory:

Recently saw Rheum due to swelling, stiffness and pain in joints, plus fatigue. Had a big flare, off work and unable to drive or function.

They suspected inflammatory arthritis (psoriatic likely)

I had an IM steroid injection and started sulfasalazine due to not being ideal for Methotrexate as I'd hoped to try to conceive soon.

Steroid was amazing but I reacted to the Sulfasalazine so that was stopped.

Seeing them again in 3 weeks to try the next medication and have another steroid.

The previous steroid has now stopped working and I am in agony. I take naproxen twice a day and codeine too. But with my wrists, knee, fingers etc all being so stiff and swollen and painful I can't manage to do anything. I have a 3 year old who I am the sole parent of and get support from family. I couldn't chop a bloody vegetable if I tried (which to be honest my three year old feels fine about) but more so I can't turn on the tap, pull my jeans up or get a bra on. Thankfully family support us with meals and such.

I'm 31 and part of me is furious that I am in this position when last year I was fine. But the other larger part of me needs to get some stuff in place to manage our lives better and let me be the parent I want to be.

I couldn't lift the kettle for a cup of tea today and let's be honest.. tea is required for functioning!

So, anyone with any inflammatory arthritis or similar conditions..

What help is out there? What can I do for myself to function in less pain (or at all really).

Any services or aids you've found invaluable?

I have heard of wrist splints etc being helpful for driving etc but wouldn't know where to start in getting some.

I put in a referral to the adult services to ask for some support though unsure what if anything they can do.

Thank-you!

I have had rheumatoid arthritis since I was a baby. I also became totally blind as a baby due to complications of uveitis which can be associated with rheumatoid disease. It is currently under control and I rarely have inflamatory episodes since I have been taking a biological drug called Benepali. I have been on pretty much every rheumatoid medication going since the age of three and, with the exception of very high dose steroids, this is the best medication I've taken, both in terms of controlling my symptoms and in terms of side effects. I also have an eight-week old baby and I took my medication throughout my pregnancy and while trying to conceive with no ill-effects to me or our perfect baby girl, just some advice if you're looking for advice on what medication to take while trying to conceive.
Regarding your other question, I think it is definitely worth contacting adult social services. I currently receive 21 hours a week of funding to pay for PA support to assist me with daily living tasks as, though my rheumatoid is currently under control, a lifetime of the disease has left me with permanent damage to most of my joints and very limited movement as a result. I also need day-to-day support due to my blindness. I choose to employ my PAs directly so the local authority pay me the money to do this each month and I then pay my PAs. I assume your local authority will offer the same option but it depends on area. It is definitely worth requesting an assessment from them to see what support they may offer you. Please let me know if I can offer any further advice as I know this is a very specific matter and it may be hard to find anyone on here who is in your exact situation so I'm happy to help.

I have ankylosing spondylitis (a type of inflammatory arthritis) with issues in my back, hips, hands, ankles and feet.

I originally brushed off the back pain as life with a small child before it spread to other areas. We were trying for DC2 when I was diagnosed so there were limited things I could try.

I’m now on a biological- adalimumab- which has made such a difference to my pain and day to day mobility.

I can’t help with additional help that might be available but it’s definitely worth talking to your consultant about if you would qualify for biological treatment.

Hi, sorry that you’re suffering with this, it’s extremely difficult to function until you get the right meds and treatment for you. I have rheumatoid arthritis so understand your situation. I progressed from not being able to lift a cup, dress myself or shower without help, with the correct help I’m still working and pain free most of the time. My rheumatologist department referred me to OT and they supplied me with wrist splints, made to measure resting splints for night time and other items. Contact the RA nurses and ask for a referral and explain that you are really struggling. It can be a bit of a rollercoaster journey but hopefully you’ll get there soon.
Go on the NRAS website as they have loads of advice and do several helpful publications that you can send for, free. They also have a helpful forum of people in similar situations that can be helpful in giving information and offering support

Thank you so much for sharing and I'm sorry to hear you've had a rough ride in finding the right drug. Congratulations on your baby!
This feels like positive news to me as I'd worried if Sulfasalazine failed there may not be anything else I can try. I believe they need me to try and fail two DMARDS before looking at biologics but since I'm limited with the hopes of conceiving eventually (though for obvious reasons this is very much on hold!) I worried there wouldn't be much else to try.

Glad to hear SS have been helpful for you. It was a bit of a last ditch attempt as I just don't know where to turn and feel that while my family are amazing, they cannot drop their lives to look after me and my daughter.

I really do appreciate it! It has been a whirlwind of the last few months and honestly I'm exhausted!

Thank you for sharing and sorry you've been through this! It was also while TTC via IVF for a second child that this all came about. Feels frustrating to go from active treatment for another child, to everything being on hold and feeling unable to care for my current!
Thank you, I have the appointment on the 19th so hopefully I'll get some information on what they plan to try next. I'm not sure I'd qualify without another trial of a different dmard as usually they ask for two. The only other I know of would be hydroxy though this isn't usually prescribed for psoratic which they're thinking it is.

Thank you, I really appreciate the solidarity. I feel completely useless and non functional. The lack of tea this morning is definitely not helping.
It's amazing to hear you're doing so well on medication and gives me a good amount of hope for being functional again!
I'll definitely ask for an OT assessment when I see them. The little wrist support I got definitely offers a small amount of comfort for driving so a proper one would likely help a lot more.
I'm seeing them on the 19th for the next lot of treatment so will be able to ask then and explain everything.
That's brilliant, thank you so much.

Whilst I don’t have a diagnosed permanent condition, I did have an episode whereby my wrists swelled up and any movement, particularly my thumbs, was excruciating.
I saw an MSK for exercises. He advised splints which I bought off Amazon as NHS don’t provide them 😢.
I also bought front fastening bras, toilet wipes (I couldn’t wipe my bum!!!), and this kettle. https://www.argos.co.uk/product/1979099?istCompanyId=a74d8886-5df9-4baa-b776-166b3bf9111c&istFeedId=c290d9a9-b5d6-423c-841d-2a559621874c&istItemId=rraatwrmr&istBid=t&utm_custom6=PLA&gclsrc=aw.ds&&cmpid=GS001&_$ja=tsid:59157%7Cacid:598-923-9094%7Ccid:20435174830%7Cagid:%7Ctid:%7Ccrid:%7Cnw:x%7Crnd:13081445811859617855%7Cdvc:c%7Cadp:%7Cmt:%7Cloc:9046607&utm_source=Google&utm_medium=cpc&utm_campaign=20435174830&utm_term=1979099&utm_content=shopping&utm_custom1=&utm_custom2=598-923-9094&GPDP=true&gad_source=1&gbraid=0AAAAAD9II9lTeth0XoOuBqlfdHddbkuB9&gclid=Cj0KCQiAlbW-BhCMARIsADnwasp7nabj9LTonZatkWgsCtSVWKR-omQ-Vx5nsH2DPefJK-m4Fny2RMEaAsGMEALw_wcB

Yes it’s frustrating to have to try a few things before you’ll qualify.

It’s definitely worth asking about though. The adalimumab has made such a difference to me and I’m now 26 weeks pregnant with DC2 and can take the medication all the way through pregnancy. I wouldn’t have been able to cope without it!

Please don't panic that this will be your life, it's terrible until you get the right meds. You will find them, there are so many choices when some meds don't fit. Sulfasalazine made my immune system plummet. I was just like you and now I am pain free.

Psoriatic arthritis is an autoimmune arthritis. Your immune system is overworking and begins to attack its own joints.

It's shit (I was diagnosed 7 years when my DC3 was a few months old)

I'm currently having a flare and I've been unable to walk for 2 weeks. I've been on Methotrexate for 6.5 years and it was very successful for me but it now seems to have stopped working. I'm currently awaiting my funding to be approved so I can start a biologic.

In my trust you need to 'fail' 2 DMARDs and have active disease to qualify for a biologic.

Sadly my recent steroid injection didn't work and I also have a burst Bakers cyst in my knee so I'm a fucking mess at the moment. 3 weeks ago I was well and active and now I can barely hobble the kids to school (thankfully I WFH and someone does pick ups for me!!)

GP is useless, I've been 3 times for pain management - Naproxen which didnt help and I'm now taking Diclofenic, Codeine and paracetamol. I also ended up in urgent care twice last week due the burst cyst. The cyst is something people with arthritis are more prone to but they initially thought it could be DVT.

Generally I'm quite positive and upbeat about my illness. I've had huge periods of wellness / remission but in the depths of such a severe flare I can feel quite angry. I'm 44, I have 3 DC and the youngest is disabled and likely to need my support for life. I wonder how I'm going to manage as I get older.

My advice is join some support groups (FB is good for this), keep on top of pain management, rest as much as you need to and don't feel guilty about being too poorly for work / the basics.

Flares do pass.

I know you say MTX is not an option with you TTC, has anything else been offered? Keep in touch with your Rheumatology team, make sure they know you are still unwell. Ask them for support (I usually email in and get a response the same day)

It is crap when you are poorly but there are so many treatments and options, it's not hopeless.

Just to add, if you don't already have it, apply for PIP.

Also ask for OT referral and see if your rheumatology team offer a "rheumatology psychologist" service or something similar as they'll be able to direct you you support groups / practical support.

For practical stuff, push for a referral to occupational therapy. They will likely push you towards a lot of grey vinyl but will advise you on suitable splints and supports and equipment you can use in the home or at work, if you are able to return.

My issue is hypermobility related, so joint instability and osteoarthritis. So far I've managed well by having a plastic kettle as they stay quite cool to touch (so I can use both hands), as well as being lighter, but if I was struggling I would consider one like the hot water dispenser type linked above or maybe use a kettle frame like one of these
https://www.essentialaids.com/kitchen-aids-feeding-aids/kettle-tippers-teapots.html

I really struggle with opening jars and bottles. I used to use one of the jar openers with teeth but started to find those just as difficult as using a damp cloth but then saw a link to one of these. It's fiddly until you get used to it but absolutely wonderful
https://quopener.com/en-de?srsltid=AfmBOoqN1B7r6mu8BIdRpVfdQqUrPJCdzuM2rZl-5C96CvRDhxr66Ndc

The absolute best thing you can do is get pregnant, as you're TTC anyway, throw everything at it. The vast majority of women go into remission when pregnant and you are often starting from scratch in terms of finding the right treatment after a pregnancy.

Once your family is complete you can get more drug options and have confidence in the longer term. The TTC keeps you in a kind of limbo. My children are closer in age that we'd have planned, for similar reasons.

Even if you are not able to get another large IM steroid shot, they should be able to give you local injections into any large swollen joints. That really helps, take as many as you can.

I have worked my way through sulfasalazine, methotrexate and Leflunomide which are all dmards. When I have a bad flare up, oral steroids do help but are not a long term solution. The rheumatologist was happy for me to have them when between meds or where I was starting a new med and waiting for them to kick in.

I also have etoricoxib anti-inflammatory - they are much more effective for me than naproxen.

And as other pp mentioned, ask for an OT assessment as they can help with practical adaptations and kit.

You should also be referred to physio as well as OT

Firstly thank you all so much for the advice and so sorry to hear you've all been through similar. It is so disheartening to struggle to do all the things I took for granted. My daughter desperately wants me to pretend to be a sheep and God I couldn't even get down on the floor, let alone on all fours. This is the sort of game we used to play for hours.
I do feel like I'm failing her.

@Soontobe60 - thank you for the recommendation, a kettle like that would definitely solve my lack of tea problem. And let's be honest, things feel pretty crap when you can't make yourself a cup of bloody tea! I'll look into those and some lighter mugs too.

@TheFamousMrEd - Congratulations on your pregnancy and so glad everything is so well controlled!

@theresbeautyinwindysun - This is really encouraging. Thank you! Just to know this is often how people felt and that they're now able to live life!

@CrunchyMum - So sorry to hear you're in a bad flare. The cyst sounds bloody awful on top of everything. I have the same pain relief offered and use them at maximum doses to little effect. I can absolutely appreciate feeling angry or worried about how things might look in the future, especially with your DC. Thank you. I do feel guilty, I've gone from the active mum and clinical member of staff to barely functioning and unable to even cook for myself, let alone my DC. I've never felt so unreliable in so many aspects. My house is a state because I just cannot get on top of it. The only ones doing well out of this is the cats, who are enjoying all the sedentary love.
I've been given Sulfasalazine which I reacted to, and they told me they'd be starting a new one one Wednesday 19th. I've had the IM steroid and they've suggested I try and hassle my GP for another, or some oral steroids, to get me to that appointment. I'll also ask them about OT and physio, and certainly rheumatology psychology as I hadn't known this was a thing.
I hadn't thought about PIP, I always figured I wouldn't be able to get it anyway. Though would help in terms of where I'm going to find the money for all these adjustments!
I had wonderdd if there was any sort of support as my one big limiting factor for driving is changing gear (both depressing the clutch and gripping the gear stick). But I most definitely couldn't afford to change it to an auto so it stays in my driveway and I feel even more isolated. Did you find the process to apply for PIP straightforward? I've only ever heard horror stories!
My work did give me a blue badge for the hospital so on days I can make it in, I can at least park at the door (though then I hobble in and do little to nothing other than direct people dictator style!)
I'm on a formal sickness review now, having never once come close.

@PickAChew - Thank you for the OT recommendation, I think they're definitely the ones to see. I had hoped that by referring myself to adult services they may provide this, but will also look into it via the rheumatology team. The kettles look ideal and that Jar opener looks magic. I have the same one with teeth that you mentioned but can't grip it on hard enough.

@LadyQuackBeth - I had thought of that path, just cracking on and getting that part done. But I have IVF to conceive and I have tried twice since these things started (when I was sore but totally functional and it was minimal). The first was a missed miscarriage, the second was a negative and my fertility consultant had mentioned untreated inflammatory arthritis can make it more difficult. My next attempt will be my very last attempt due to funds. So I really want to be as fit as I can be. I also worry that if I go ahead and don't manage to get sorted, I'll be drowning myself in another tiny person I am unable to care for. I think I need to know I'm okay before I try if that makes sense.

@jointproblems - I haven't heard of Etoricoxib so will absolutely discuss this with my GP as Naproxen does little other than give me heartburn despite the Omeprazole!

@Skipsy - Thank you, I will absolutely get referrals to both ASAP.

When I first saw the Rheum, I wasn't so bad. It was definitely painful but I was managing and it was more an irritation. I could do everything normally, but with pain.

So they've yet to see and fully appreciate that I've become a shell of myself in the intervening months!

Really appreciate all the support. I feel like all I can focus on is the pain at the moment and it's making it harder to looking into help, I felt like I didn't know where to start!

@HavingAMinute it’s interesting about them saying untreated IA can impact your ability to conceive. I didn’t conceive until a few months after I’d started the biologicals which was when I started to feel more normal again!

Before I was really struggling with pain but was trying to just push through with wanting DC2. Mine isn’t as bad as yours, but some days I was bent over at the waist and couldn’t stand straight at all. Why I was TTC during that time I don’t know 🤦‍♀️ it sounds like a good idea to get the arthritis settled before TTC.

Good luck at your next review 🤞

Yes I found it interesting too. I feel like the idea of trying with how I am feeling would be impossible. Least of all because I couldn't get to the clinic or get my legs up in stirrups! It's so difficult to see the way out when you're in it. I think the fact this is the last attempt for me is making me think things through a bit more.

Thank you! Hopefully they'll have some answers. Though I appreciate it can take weeks and weeks for things to start working, it would be good to feel like I am on that path.

I am sadly not sure that most women do go into remission when pregnant, even though it was something I had heard over the years.
I have an eight-week-old and was under the care of the specialist unit who deal with rheumatoid and other auto-immune conditions while I was pregnant. During my initial consultation the consultant advised me that, while some women do go into remission, for others symptoms remain unchanged and, for others, they actually worsen.
They said that, while my biologic medication was considered okay to take during pregnancy, I may wish to stop it in the third trimester if I felt I had gone into remission. At about twelve weeks I had an urinary infection and had to stop my meds for a week while on antibiotics. This resulted in a mini rheumatoid flare which was resolved when back on my biologic. With this in mind I was advised to continue with the meds as pregnancy alone was clearly not holding the inflamation at bay and using Benepali into the third trimester was considered less risky to our baby than leaving active rheumatoid disease untreated.
Despite my complicated medical history, having had rheumatoid arthritis since I was a baby, I actually had an extremely straightforward pregnancy and delivery, thank god, which I mainly credit to my current medication finally having got my rheumatoid under control so I would personally recommend getting yourself on a reliable, effective and pregnancy safe drug regime and getting your symptoms under control before trying to conceive, especially because, even if you do go into remission, women with rheumatoid can frequently experience a flare-up following birth, particularly if the disease was poorly managed before pregnancy.

So glad that things stayed under control for you, my biggest worry would be the risk on any pregnancy due to uncontrolled inflammation. Second only to the fear that currently I am unable to be the parent I want to be to my first, so a second seems cruel!

Adult social care have said they can't help me until I am treated and "at baseline" so I'll have to hope the rheumatology nurse can do an OT referral. Thankfully my GP has given me 5 days of 40mg pred. So that'll get me to my appointment.

I did briefly look at the PIP forms as I can't make dinner, mobilise or even get a pair of jeans on at the moment. But honestly the whole thing left me feeling a little extra wobbly about how things are currently. I also feel like if I filled out the forms now, I may have a chance at being eligible. But hopefully in a few weeks I'll have started a new treatment and be a new woman. So for now I'll leave it.

Work gave me a blue badge for their car parks (can't remember if I've said that) which has hugely helped get me into work as I can park right by the door and waddle on in. I'm on a formal sickness review now so pleased to at least show my face.

Recently diagnosed with psoriatic arthritis too, in a bit of a mess to be honest. Tried sulfasalazine too but it affected my mood as well as my liver enzymes so I'm about to start methotrexate. There's another DMARD called lefluonamide but no idea about TTC and this drug as I'm 53. Get a follow up appointment with the rheumy team, do you have a hotline to call where the nurses can call you back? Ask for OT referral and if you need it, physio.

I also joined 2 UK based psoriatic arthritis groups (make sure they're UK) and they have LOADS of help and support
Good luck

Sorry you're here too. It's the pits!
I hope Methotrexate works for you. The Leflounomide is unfortunately not suitable as this needs to be stopped two years before you can TTC. While the idea right now seems impossible anyway, I'm keen to try something safe as can't bare the thought of finding a drug, finally feeling better and then having to come off it anyway and going back to square one.
We do have a hotline and that is who I called recently in a bit of a state. They've got me in for an appointment with the nurse to start the next DMARD on Wednesday. Hopefully physio and OT can be requested on this appointment.

Thank you, I'll look to join!

Did you find the process to apply for PIP straightforward? I've only ever heard horror stories

Just going back to your question @HavingAMinute

Sorry if I wasn't clear. I haven't actually claimed PIP, it was just a suggestion that may help you x

Hope you get some respite soon. I think my steroid injection finally started to work as I'm able to function a little bit closer to human level now (nowhere near normal and my normal was nowhere near normal people's normal 🙃 but I'm feeling a small improvement)

@Crunchymum- Thank you, it is certainly something to look into. Part of me feels like I'd be cheating the system as all this was, in my nieve head, going to be sorted on the first medication with no issues. Now that it hasn't happened and things are worse, I feel like if I did apply, I'd almost immediately be able to say "hey I started a new drug and I'm fine now!"

The other part says that all the aids I could use to better mine and my daughters life, like press button pour kettles, button hooks, an automatic car etc, I cannot currently afford. So maybe it is the right thing to do. Equally admitting how hard things are is a bit of a kick when a considerable part of me is trundling along with the idea that this can't be happening.

So glad your steroid jab started working for you! I've got 40mg prednisone per day now and the swelling has definitely reduced some, which has helped the pain. I'm still stiff and sore but not the blinding pain I was in.

I called my brother the other day to say I thought I'd broken my arm in my sleep. My wrists was agony and HUGE. It's gone right down with the steroids but my god the pain...!
He logically said I probably didn't break it by sleeping but you could have fooled me!

If you are ttc then methotrexate and leflunomide contraindicated so you can then go straight to a biologic if you are bad enough. Push this with your team!