Help living with inflammatory arthritis

Emmasknackeredjoints

Hi everyone, I'm new to this group and not really sure how to start. Basically I was fit and healthy 38yrs old in 2020, taking health for granted as you do. Then possibly after having covid I developed reactive arthritis, which has totally destroyed my life. I live in constant pain, loss my job, cant walk well with many days of housebound.

I've had to fight to be heard and eventually given DMARDS but the side effects were horrendous I'd had to stop after 9months.

How do you cope with all the synovitis,bursitis, tendonitis, all soft tissues knackered.

Anyone with any arthritis giving advice would be grateful.

I cant seem to get anywhere and there is such a stigma to reactive arthritis and no one gets it

chrisb

Hi @Emmasknackeredjoints, 

Welcome to the versus arthritis forum. 

You have been diagnosed with Reactive Arthritis which has totally changed your life. You experience pain and mobility issues. You’ve had to stop taking DMARDS due to the side effects. 

Well, you’ve certainly been unfortunate in getting this condition and the extent of the symptoms. I hope that you receive some useful input and advice from forum members who have experience in this area. 

In the interim, this link to our website may be useful if you haven’t already seen:

https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

 

This section may help you with pain management:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/?_ga=2.91502490.1073603194.1698341589-975178968.1599145417

Looking around past discussions there have been a number that mention Reactive Arthritis, so fingers crossed that some advice for you is forthcoming.

Best Wishes

ChrisB (Moderator)

Emmasknackeredjoints

Thank you chris.

I think that's the hard part everyone says reactive arthritis goes away on it's own so mayb I have been given wrong dx.

Thank you for getting back to me

jamieA

Hi @Emmasknackeredjoints

I also likely contracted covid in 2020 and then my left knee became swollen and then my hands wouldn't close. I'd previously been a fit and healthy 64 year old male. I was diagnosed with psoriatic arthritis (PsA) in October 2020 - I've had psoriasis for 50 years. PsA has affected my shoulders, elbow, hands, knees, ankle and both feet. I was further diagnosed with enthesitis which about a third of PsA sufferers get, as well as bursitis and metatarsalgia. After the PsA diagnosis I also took 3 bouts of pneumonia and a heart issue so was admitted to hospital 5 times in 6 months. My local hospital where my rheumatology clinic is doesn't have an A&E or admissions ward so every time I was admitted it was to a larger hospital where I was seen by probably about 10 different rheumatologists - none of whom were my consultant. One diagnosed me with polymyalgia rheumatica, another with gout and a third with only osteoarthritis. So I don't think it's an exact science. Similarly the drug treatment seems a bit like poke and hope. I'm now on sulfasalazine, methotrexate and the biologic adalimumab which is working for me - but it took a hard 10 months to get there.

Having never suffered a chronic illness before I initially put my full trust in the medics I saw but soon realised that I needed to be more assertive in my dealings with many in the medical profession. I realised that I couldn't be a passenger in all of this and that not every medic had my best outcome at heart. I changed my rheumatology consultant and also my GP practice - the rheumatologist and GP I now have are much better.

So my advice would be to keep on fighting and demanding if necessary - and put your concerns in writing so that it is registered. I'd read somewhere that patient correspondence related to their medical condition was kept in their medical file. So I wrote to my first rheumatologist detailing my condition and lack of working treatment and told him if he wasn't prepared to help me to refer me to another consultant. He then referred me to pain management, occupational therapy, physio and put me on the biologic which eventually controlled my PsA. I don't think that would have happened in any immediate timescale without that letter.

I hope you get sorted soon.

Emmasknackeredjoints

Hi Jamie, thank you for your reply, it was very helpful in many ways.

having PsA in many joints must be hard and having sulfasal, mtx and biologics, o my goodness I don’t know how you manage that. I felt so unwell, 48 + hrs of constant nausea and vomiting with no food or water was to much. I’m now on the same biologics which seems to help, I hope it keeps working. How long was you on this before you noticed improvement. I’ve had 5 injections so far.

your right about putting things in writing.

after 11 months of being refused face to face appointments, no bloods, refused MRIs and then given the wrong diagnosis for 2 MRIS, I wrote to PALS. Although they have covered up the negligence at least I got moved to a new rheumatologist who has acted the way you would expect a doctor to behave.

like you I had never been unwell, so put my trust into these so called doctors, but in the 3 yrs I’ve been unwell, doctors have lied to my face, belittled and patronised me, and defo what they say is not what they write on your notes.

as awful as it sounds I have no trust or respect for the healthcare system, doctors which is sad really but there we go.

hope your having nice day, my knee is pounding at the moment as I’m trying to walk more but very little steps

jamieA

Hi @Emmasknackeredjoints

By the time I was put on Amgevita(adalimumab) I could only walk with the aid of 2 elbow crutches. Within 3 weeks - a week after the 2nd injection - I could feel a difference. After 2 months I handed back my elbow crutches. I walk with a limp - my left knee needs replaced - but I'm now able to walk my dog 50-60kms a week. My rheumatologist describes the sulfasalazine, MTX and Amgevita as providing more than each drug individually - or as she put it 1+1+1>3. I think the term is synergistic. I've had a couple of noticeable flares when I've reduced one of the drugs and I'm feeling a bit aching just now as I'm on the 2 weeks suspension of MTX after my covid booster.

I manage my medication with the help of my pharmacist putting everything in blister sheets for me. I also take folic acid as well as 3 heart drugs and a vitamin D supplement so the only way to manage is using blister sheets - or dosette sheets as they are also called. Prior to all this the only medication I took was the lowest level blood pressure tablet as my BP was borderline. I try to avoid painkillers unless absolutely necessary but I do have lidocaine patches and that helps my knee and lower back.

My first rheumatologist told me I had to 'suck it up' on our first meeting. One of the consultant rheumatologists I saw when I was hospitalised in the other hospital told me if I were his patient I'd be on biologics 'sooner rather than later'. My 1st rheumatologist's response when I told him this was that he wasn't taking note of 'some doctor I saw' with regard my treatment - despite me giving him the consultant's name. That's what promped me to write my letter of complaint to him requesting a change of rheumatologist. I did the same to my GP.

I hope you get stable soon.