Finding the right treatment

sharongronow

I was diagnosed initially with Inflammatory Arthritis 2 years ago which has progressed to Rheumatoid Arthritis. I have tried Methotrexate, Sulphasalazine and recently Adalimumbab Biological therapy. All to no avail, often given nasty side effects. I am very steroid sensitive but cannot use them long term. I’m currently waiting for funding and supply of a new Biologic therapy. I am really struggling with carpal tunnel syndrome at night and sometimes during the day , poor sleep and ultimately fatigue. How do people feel about and cope with fatigue? Many thanks Sharon.

Dannii28

Evening @sharongronow,

Welcome to the Online Community Forum, I am sure you will find lots of people in a similar situation to yourself. Fatigue is one of the hardest parts for me living with arthritis so I really can sympathise with you. I have attached below some links that you may find useful.

https://www.versusarthritis.org/news/2022/february/top-tips-for-good-sleep/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

Please do have a look around for other discussion threads as you will likely find some about fatigue and how other are coping.

Take care

Dannii (mod)

frogmorton

Hi @sharongronow nice to meet you.

I tend to be most fatigued when I am having a flare and at the beginning prior to getting effective treatment.

Definitely you don't want steroids long term they are such a double edged sword aren't they?

I tend to rest more when I am fatigued setting alarms to ensure it's not all day! I also still go for my walks but they are likely to be shorter than normal.

My carpal tunnel is mostly at night so I wear my splints which totally stops it...until I have a hot flush then they come off and it kicks off! Then I just dangle my arms out of the bed and gently wave them around towards the floor until it eases off.

Either way not as much sleep as I'd like🙄adding to daytime tiredness.

Take care

Toni

sharongronow

Hi Toni

It is so nice to hear from someone who understands! Steroids have led to me being type 2 diabetic which I am hoping to reverse now that I’ve stopped with the Prednisolone. I am dreading the summer months wearing the splints at night and totally agree that dangling your arms out of the bed helps 🤣🤣🤣🤣 I felt a bit daft describing that scenario to my Rheumatologist but I guess it is a thing!

Take care too .

Jock1

Hi @sharongronow

i can totally relate to hanging the hand out of the bed at night, at first my wife thought I was nuts, now it’s normal :-)

I’m just trying to read the signs of flare ups and fatigue associated having only been diagnosed as having ‘some type’ of autoimmune disease recently.

I’ve started methotrexate recently and coming off prednisone slowly.

I’m struggling to get 4/5 hrs of sleep at night and find trying to get small power naps during the day helps to a certain degree, guess I just need to keep experimenting on my ‘new’ journey.

take care

Jock

jamieA

Hi @sharongronow

I have psoriatic arthritis and was put on the same drugs you listed - neither sulfasalazine nor sulfasalazine and MTX combined worked. I'm now on a combination of sulfasalazine, MTX and the adalimumab biosimilar Amgevita. My consultant said it was synergistic - where the 3 drugs together give a greater result. I know everyone is different in how they react to drugs but that combination has dampened down my PsA significantly.

I also have carpal tunnel like symptoms in my right wrist but I've been told by my consultant it's enthesitis - inflammation of the area where the ligaments and tendons attach to the bones - as I get similar symptoms in my forearms and right elbow. I saw an orthopedics consultant a couple of months ago as my left fingers are now a 'mechanical' problem. During the discussions I happened to tell him I was wakening most nights between 3-4am with my hands and wrist aching and had done so since just after I was diagnosed with PsA in 2020. He provided me with what he called night splints which are very long - they end just over 100mm from my elbow and have 5 velcro fasteners. I feel like an extra from Gladiator with them on! They have helped significantly and I don't wake up at 3-4am when I wear them. I live in the west of Scotland so overheating in them doesn't really come into it - though I do sleep with my arms by my side but on top of the duvet.

I hope you get a treatment that works for you soon.

sharongronow

It is very interesting to hear that you are using multiple drugs, I’ve only ever been offered them one at a time (along with Prednisolone), going through the whole “let’s give it 6 months to see if it works” scenario. Thank you for sharing your journey.