Agony with RA

[LJS13]

Hi, I’ve been suffering a lot at the moment. I’m currently on methotrexate and humira injections maximum dose and tramadol for pain and just finished a course of steroid tablets. I haven’t worked in 2 years but I have been struggling money wise so I have just started working again 3 weeks in to my new job only working 12 hours a week, I can hardly move I’m struggling to walk all my feet ankles and hands are swollen my knees and hips are killing and my calf’s are really sore and I think I’m getting plantiofacitis back in my feet. Any other suggestions on pain relief I’m allergic to morpheme. Thanks by the way I have been diagnosed 10 years and so far still haven’t found any drugs that work apart from steroids but the doctors will only let me have them twice a year.

Thanks

[Deniseelk]

It sounds like the inflammation is still there so the steroids have not done their job. I suggest you go back to your Rheumatologist and they may provide another course of oral steroids or give you a steroid injection.... sounds like a higher dose was needed ( this happened to me when my flare and inflammation set in.... I didn’t go straight to Rheumatologist as I thought it was just a usual few day flare). Don’t suffer, they are there to help and can only do so when we tell them exactly how we are suffering!

[LJS13 in reply to Deniseelk]

Thanks for your help I’m currently waiting for my doctors to open to see if he will do me a steroid injection I can’t wait in pain for weeks to get back in the hospital their waiting times are so long to see my rheumatologist. Even when I feel better the inflammation is always there just not as bad as normal it’s a nightmare. My rheumi said they can’t transfer me to another department in the hospital to see if they can help because they can’t do anything while there is inflammation

[Deniseelk in reply to LJS13]

If your GP surgery can’t help quickly ( some do not have the specific needles needed / aren’t trained) please do stress to them the delays you experience to get seen by your Rheumatologist as your GP may be able to contact them direct for a urgent appointment. Do stress things like pain levels / unable to sleep / unable to carry out basic roles like driving / bathing / dressing etc. These all impact on your daily living and should be a concern of your GP/ Rheumatologist.

[LJS13 in reply to Deniseelk]

I’ve managed to get in, I’m lucky in a way as my doctor is the only one at the surgery able to do steroid injections. I can’t drive my manual car I’ve had to borrow my dads automatic as I can’t change gear in mine it’s too much pain. Don’t worry I will tell them hopefully they will do something but I’m not sure 😕

[hatshepsut]

Sorry that you are struggling. Have you tried heat/cold pads.....personally I go for heat , and it can give some relief. I also take arcoxia, and dihydrocodeine and paracetamol.....taken together more effective.

Hope you find some relief soon.

[LJS13 in reply to hatshepsut]

I haven’t tried them more so because the pain is in so many places. Thank you fingers crossed I’m fed up now

[charisma]

Hi LJS

Sounds as if you need an urgent appointment to get the disease under proper control.

We have to remember RA is a ‘life limiting’ disease; we are not enjoying normal health and ability to work normally.

Do push for review ASAP. Good luck, hope you get relief.

[LJS13 in reply to charisma]

I was only there 6 weeks ago at the hospital I asked for a course of steroids which I got but it’s always the same they just think that the injections I’m on are going to miraculously start working lol. I’ve been on methotrexate a year and humira since February. It’s so annoying 10 years and it’s still not under control. So far nothing has worked 🙁 thanks for your help

[singlecrochet in reply to LJS13]

how long did your Rheumy tell you before MTX and Humira kick in?? I started MTX inj. in January and added Humira in May. I understand I may need to wait a while longer for benefit. I truly empathize with you LJS13, as I am a newly diagnosed 62 year old with way too much fun out there to let this crap get me!

[LJS13 in reply to singlecrochet]

I think 3-6 months for methotrexate and I can’t remember with humira. You should be starting to see some benefits of the methotrexate but depends on your dosage mine is now on 25mg weekly injection because the lower dose didn’t do anything and I think I’m on 40mg humira fortnightly. It’s a rubbish disease and hard to get your head round it. People don’t understand as they can’t see anything wrong with you thank god for these groups lol. Remember if you don’t laugh we will cry

[wishbone]

I can't take RA meds so need to take a tramadol/paracetamol combination and and an anti-inflammatory, which does help, but is nowhere near as effective as RA meds. I find that I need to limit my physical activity, especially now I've stopped my meds (hopefully temporarily) or it's payback time and I need to take it easy for the next couple of days. You can take all the pain relief you want, but like charisma, I think the real answer is to go back to your rheumatologist to see if you can get your RA under better control.

Good luck and hope you get sorted soon.

[Angels54]

Hi I know how you feeling, I am now leaving my 3rd job , been on steroids for year , now have cataract on both eyes and 3 fractures in my back because I bent over , now in agony been in house for month trying to rest up , just had bone density test, waiting to see what’s next .

[LJS13 in reply to Angels54]

Blimey that’s bad , steroids is the only thing that seem to work but my rheumi only likes me having them twice a year I’m not sure why when people are on them long term. Working with this condition is so hard when your condition isn’t in remission. Employers don’t seem to understand I think they think we are putting it on, if only they knew what we go through

[Harimah]

I know exactly how you feel but have found that the only thing that works for me is Prednisilone [ a steroid ] like you I too have had endless problems with my GP and Rheumatologist about this I can't seem to get it through to them that Methatrexate and ordinary pain killers don't work, At the moment I take 10mg of Prednisilone daily just that and nothing else and i.ve been taking it for 4 years, without [ touch wood ] any obvious side effects and this works fine for me i'm completely painfree but the Rheumatologist is shaking her spear once again and threatening to stop prescribing and just leave me high and dry but this has happened a few times and my screaming and crying has worked so far so the only thing I can suggest is bring out your big guns and take it from there

[Liggle]

I really feel for you high dose of steroids, are the only thing that works for. I just

been diagnosed with Perpheral Arterial Disease (PAD) thing is sincere I was diagnosed with RA about ten years ago, every thing is falling apart ,I do feel for you but sorry

I am unable to think of anything to relieve your pain , but I understand so well and care

Elizabeth x