Pain, stiffness, fatigue struggles

[Awwy]

Hi

I was diagnosed with mixed connective tissue disease in 2022 after years of struggling. I was started with hydroxychloroquine but struggled to tolerate it.

My symptoms align more with rheumatoid arthritis. I started with my latest flare in August 2024. Just doesn't seem to be getting better.

I am on methotextrate 10 tablets. I started sulfasalazine 3 weeks ago suppose to get to 4 tablets a day (1 gram per day). Really struggling with the side effects so going down to 2 tablets again at the moment.

I had steriod injection to help with inflammation but to be honest steriods do nothing for me anymore. Been on and off various doses.

I'm struggling to sleep maybe get 4-5 hours a night. Getting up in morning feels like I've done 10 rounds in a boxing ring. Feel bruised and battered. Hips are very painful as are my neck and shoulders. Plus, my hands are very swollen, and trying to put my feet on the ground I just need to brace myself. I'm so tired not sure how I make it out of bed to work, but immediately after work and weekends are spent in bed as I don't have the energy to do anything at all .

Anyone managed to take sulfasalazine and taper up?

I'm hoping I can go on biological therapy but have to try all the DMARds according to NHS.

Any help on advice on medication side effects, coping daily would be helpful.

Thanks

[virtualreality]

Hello, I'm sorry to hear how difficult your symptoms still are - I remember feeling like this at the early stages of RA too and it's so hard to manage, especially with work.

I take methotrexate and sulfasalazine among other things, and found switching from tablets to injections helped with MTX side effects. You may get a higher effective dose with the injections too, because they bypass the digestive system / any possible absorption issues. That and folic acid six days a week plus drinking plenty of water around the weekly dose.

I've been really lucky with sulfasalazine and have no problems with side effects day to day. Everyone's different of course but one factor may be which form of sulfasalazine you're prescribed - it seems that side effects (especially gastro side effects) tend to be worse with the standard version and less with the enteric-coated / gastro-resistant version (which is what I take). So if you're currently prescribed the standard version it might be worth asking to try the gastro-resistant ones to see if that helps. This has been the medication I've found most helpful personally so it can be good one, at least sometimes.

Rheumatology teams seem to vary hugely in when / what criteria they use for prescribing biologics, but often trying two conventional DMARDs and finding them ineffective / inadequate for disease control is sufficient for them to be considered. It sounds like you still have very active disease, so I hope you have a chance to review this with your team soon, especially if the sulfasalazine doesn't work out. Wishing you all the very best.

[Awwy in reply to virtualreality]

Hi,

I checked they are gastro-resistant. It's not the sickness but I feel dizzy and light headed with them. I also had a headache for 4 days until I dropped the dose down. Thank you for your kind words. 😊

[AgedCrone]

Do check with your rheumy team what the rules are re the number of DMards you need to try in your area before you can be prescribed Biological therapy.It is usually only 2 or 3…one if which must be Methotrexate.

Re Sulphasalazine…after too many nights on the bathroom floor vomiting my rheumy took me off it overnight & put me on Mtx which I took very successfully for about 7/8 years…when it just stopped working…& I was then prescribed a Biologic, still on it very successfully after another 9 years.

But don’t hanker after any particular Biologic drug…your rheumy will prescribe what your particular condition requires……what works for other people won’t necessarily work for you.

Hope you get sorted soon..

[Awwy in reply to AgedCrone]

Hi, thank you. I think she said 3 DMARDs to me. I've been taking methotextrate for 18 months but I think it's stopped working. Not taken it in injection form. I'll see consultant in a few months. Hopefully I can get something that works. Thank you for your reply. 😊

[AgedCrone in reply to Awwy]

If you think your methotrexate has stopped working …do have a word with your Rheumy team because they will be able to tell from your blood results. No point waiting a few months when you might get a consult sooner.

[Awwy in reply to AgedCrone]

My inflammation has increased by about 19 points which is why they have added sulfasalazine into the mix. Now have to wait two months.

[zen4]

I am sorry you are feeling so unwell particularly when you have to get to work. In relation to medication I had sulfasalazine for years and years with no problems which shows how different we are but if it works for you it has few long term effects. As aged crone says 2 or 3 conventional DMARDS and if your DAS score is high enough you really should be considered for biologics. In relation to sleep this is difficult as a short term codeine or amitryptaline may help but both are opoids and they are addictive if taken at high does for a long period. I have a back up pack of zopiclone which works well to get you to sleep but again does lose effect if used each night. I have it for occasional use if I have a few nights with insufficient sleep After taste is horrible though so you need to drink lots of water but knowing you have it can help you relax and get to sleep. Do check with the consultant or GP about sleep meds I am sure you do the normal stuff for getting to sleep An hours wind down, comfortable bed and temperature, completely dark room etc sometimes it can be difficult for your mind to rest and then with pain it can be hard to get back to sleep if you wake or get woken. I usually read or have an audiobook on my phone I am sure things will improve soon.

[Awwy in reply to zen4]

Aww thank you for your reply. Yes I've tried a lot of things to sleep. Sometimes I'll wake up and find that my fingers have dug into my palms because I'm in pain in my sleep. Dread trying to turn on my sides in my sleep it's terrible.

They have suggested opiods as pain relief but I haven't taken them as I'm afraid ill become reliant on them and Tramadol knocks me straight out. Again as a single parent I need to be able to look after my 2 children so can't have anything like that. Plus I need to be able to think straight.

I'm only 43 but feel like my body is much much older. My dad in his 80's has more stamina than I do. 🥲

[tyncwmmarchhywel]

Hi AwwY, The dmards,did nothing for me, Have just started Adaluimab bio,but I will not hold my breath, on the other hand, steroids seem to help at 10 mgm, My fatigue at the moment is horrid, Good luck .

[Awwy in reply to tyncwmmarchhywel]

It's such a struggle isn't it... hope you feel better soon.

[oopsnoname in reply to tyncwmmarchhywel]

Same here. I've had Sulfasalazine and Leflunomide so far, today I was put on Methotrexate (with the Leflunomide). Also on 10mg daily steroids till we find out if anything is going to work. The steroids do help with the pain and at this level don't disturb my sleep. When I wasn't on steroids I was on Tramadol and paracetamol and ibuprofen. Recently found out I have no fat under my feet (fat pad atrophy) and nothing very much is helping with that apart from not using my feet too much !!!

[Awwy in reply to oopsnoname]

Thank you for your reply. I'm struggling to walk on my feet too. Steriods make me gain weight so I try to avoid them as much as possible. I need to sleep more than anything at the moment. X

[stedhaM]

Hang in there. Sorry no helpful advice but hope something improves soon.

[Awwy in reply to stedhaM]

Aww thank you. That means a lot.