Long term flare, not releasing its grip but making mi... - NRAS

NRAS

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Long term flare, not releasing its grip but making mine weak!

Brushwork profile image
7 Replies

I have had a persistent flare in my left wrist, little finger and thumb, for over a year now. In addition Raynauds has suddenly reappeared - darn (ginger tea helps with this I think - I will at least try it). ! Metoject improved things but didn't solve the problem. I know steroids would sort it out but having read taking prednisone automatically puts you on the 'at risk' list, I have and am resisting it. I had been taking Naproxen but have decided to give that a rest too as I want to discover the reality of the efficacy of Metoject alone.

The only other change it that I am switching back from vegetarian to vegan ways.

Have a good weekend, may the pain be less, the weather kind and stay safe....

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Brushwork
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7 Replies

Morning B .. sorry your still struggling. Personally I wouldn’t call this a flare I would say your disease is active. To me a flare is something that comes on quickly then disappears just as quick. Any longer than 2 weeks I class it as active.

This steroid malarkey is a grey area to me. Steroids makes us more vulnerable.. get it..., active disease more vulnerable... get it... so why do they not let us have the steroids anyway. I would rather be vulnerable without the pain than vulnerable with . Just my take on it. Hope things improve x

Contact your team they need to know

Lolabridge profile image
Lolabridge

Sorry to hear you're having problems with your hands. I agree with J1707 that for it to have gone on so long it's not a flare but RA that is active. It would seem that your MTX medication or its dosage is not fully effective for you. I suggest you contact your rheumy and ask for a meds review because the uncontrolled RA could be causing irreparable damage to your hands.

I've been on steroids for a long time and have started a taper programme as instructed by my consultant. However, he has warned me that I may struggle to get below 3 or 4mg per day and may start to notice my hands giving me problems. I hope not, but I would rather be at higher risk by taking steroids than not be able to have reasonable hand function so I can write, type and prepare my meals.

oldtimer profile image
oldtimer

I agree with others that you are under-treated and should push for more effective treatment. This might include steroids temporarily but as both steroids and active disease increase your risk, it's a necessary evil.

Brushwork profile image
Brushwork

Yes, I agree actually. RA hasn’t been controlled for the last 18 months, pleased it’s just the left wrist and hand though. I’m loath to move onto another biologic as have had unpleasant reactions to them so far. DMARD,s have caused more problems than they’ve solved, or haven’t worked. Prednisone seems to be the way forward but.... hmmm

Summerrain14 profile image
Summerrain14

Sorry to hear this Brushwork. The sudden change in weather has made my Raynaud’s worse than it has been in recent months with awful cramp and pins and needles joining in the party too. 🤷‍♀️

Hopefully you can have your meds reviewed as sounds like a bit of tweaking needed. It sounds like steroids may be the way ahead meantime though as you have tried other options.

It is such a balance between being classed as high risk and getting your RA back under control isn’t it? It is so hard to know what to do at the moment. Having constant problems with some of your joints for over a year is awful. You are much braver than me. Do let us know how you get on won’t you? x

petalnumber2 profile image
petalnumber2

Hi Brushwork,

I’m suffering with a long term flare,

but mine is affecting my both of my feet and ankles. I have had a steroid injection, but that had no effect this time.

It’s miserable to be crippled by constant pain wherever it is in our bodies.

I hope yours settles down soon, and mine

I do find that Co-codamol 30/500 takes the edge off my pain.

Take care xxx

KB47 profile image
KB47

Hi Brushwork, I have Rheumatoid arthritis, Osteoathritis and Osteoporosis. Was diagnosed with Raynauds Syndrome when I was in my early 20s. Have had bones taken out of both hands, and my right foot because of the Athritis. I have also had Fluid drained out of my thigh, where it had leaked out of my Left Hip.

The Consultant said that it was unusual for the fluid to have leaked out like that .Whatever type of Athritis you have, they are all very painful. But my Rheumatoid is by far the worst. The only tablet that did help me was Methotrexate, but my Consultant stopped them, because it was causing problems with my Blood.

Have tried Leflunomide, Sulfazalazine and a few others. The only ones that I take now are Predisolone,and that's not very often, because they thin the bones. My Orthopaedic Surgeon and Rheumatologist work together to help me. But now they want me to have a Complete Wrist Replacement, but I said NO. If I was younger, I'd go for it, but not at my age. I'm in enough pain as it is. I don't think that I could handle the Post Operative pain.

Last Friday I had Facet Joint injections. 2 at the top of my spine, and 2 injections each side of the bottom of my spine. Oooh I've been in agony ever since.

My Butt is on fire and my legs are so heavy and painful. I've had steroid injections in my hands and my Knees, but the last time I had them in my wrists, they caused me a big Flareup,so I won't have anymore. That was 4 years ago.

No more of those injections for me.

They can stick them where the Sun don't shine. 🌒

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