Hello, RA advice and tips appreciated. Blame or thank the dog?

[Eestihideaway]

Well over a year ago, my dogs were chasing each other and one of my nutters ran straight into the side of my knee cap. Problems with my knee persisted, then got worse and I finally gave up and went to the doctor last July. Blood tests and x-ray showed possible RA. Given Etoricoxib tablets which reduced the swelling in my knee but over the following months I felt pain in other places, mainly elbows, wrists and thumbs. Saw a rheumatologist last month, more blood test and hand x-rays done, she was not convinced it was RA. Covid-19 hit and my follow up appointment was replaced with a phone call - blood test positive for low titre RF and antiCCP, RA can not be confirmed. She advised normal corse of action would be to put me on immune suppressants but not advisable in current climate, suggested the possibility to start with hypochloroquine for immunomodulatory purposes, but I said not right now (maybe I was rushing through the call and not asking questions I would have asked in person).

So, that's the basic story. I'd love advice on what I should or should not be doing. For example, yesterday I set to work spring cleaning my chicken and goose shed, doing a bit of DIY, tipping out large and small water containers to scrub them clean, lifting and carrying. Finally stoped after having a good day outside and went in to feed the pets and the kids. My elbow was hurting and after resting it got worse and my back hurt. It could be that it's my age (late 40's) combined with the fact that I've not been as active since the knee thing. Sleeping last night was bad and the pain in my elbow feels like it will snap if I pick up my coffee, so I took an Etoricoxib tablet to see if that helps. I feel like for every hard working day I'm wiped out for the next two or in pain. I've got so much to do so I'm looking for the best way of coping. Never quite sure if and when to take these tablets or a better form of pain relief (my trusted muscle pain spray no longer touches the sides). Must be active, hate not getting things done. Maybe muscle strengthening exercises?

[Hidden]

You sound like me. I was diagnosed 4 years ago but displayed symptoms many many years ago.

Fatigue is my biggest symptom and yes I get repercussions for any activity. I have to pace myself . Do a task then rest see how I am then do another. It gives against my nature but I only made things so very much worse for pushing through. Early treatment is important but getting the right combination is often difficult ( I’m not there yet) ice and heat packs as well as nsaids help with swelling good old paracetamol for pain. I kept a diary and photos both for myself and my rheumatologist ... probably more important in these times so I can send them to him..

So sorry you have had to join us but you will get a lot of really good advice on here.(I have) . It’s helpful to have rant and we don’t mind as we get it 😁

[Eestihideaway in reply to Hidden]

Thank you. Hopefully a definite diagnosis and a proper talk with my rheumatologist who wants to see me when circumstance allows, will help. Need energy, I fenced an area to keep my geese in, it didn't work they are escape artists

[helixhelix]

Sounds like you need to manage your exercise /activity a bit more. If your disease is getting active then do need to take care. So try to plan active half hours interspersed with more sedentary tasks. And don’t force any painful joints as that way does damage. Daily stretching exercises also help.

I’m afraid that certainly to start with you need to recognise that the RA comes first. So rather than one good active day and then two rubbish ones it’s better to aim for three moderate ones. You will get a pretty normal life back again, but not today.

Why didn’t you want to go on Hydroxy? As to me that sounded like a good idea....

Everyone is different, but I found that with Etoicoxib I need to take it for 5 days, and then I can stop again. Just taking it for a day does very little. These days I very rarely need it, and then mainly for osteoarthritis not RA. So probably take 5 days every couple of months.

[Eestihideaway in reply to helixhelix]

Thanks for the reply. I started a big job then made it bigger. I was feeling good, getting lots done, then pushed to finish with the heavy lifting at the end of the day instead of asking for help. I really wasn't expecting it, guess moving that bale of hay was asking for trouble. I'm so used to doing things alone and in most cases having to.

I chose not to take any medication, partly because I felt fine at the time and partly because the rheumatologist could not confirm RA, had given me the impression that the knee problem was down to the injury and the aches and pains were old age. The follow up call instead of meeting was a bit rushed and I didn't ask the right questions.

Pain aside, I do feel ok today and not drained. I will take your sound advice and try to manage my activity better. I've got lots of seeds to plant, nothing heavy today.

[helixhelix in reply to Eestihideaway]

Weak positive RF factor and positive (do you know number?) anti-CCP gives you something like a 98% probability of it being RA.

There are very different viewpoints. One says early inflammatory arthritis can be stopped in its tracks with lifestyle changes (but full on lifestyle changes) and the other is to hit it hard with drugs and crunch it into submission. Meanwhile working on lifestyle, and once back under control try to taper off drugs.

But doing nothing is rarely a good idea with this pesky disease.

[Eestihideaway in reply to helixhelix]

I've just logged in to get the details, do these bits make sense to you, it's all new to me? I looked up the whole list of everything tested for when the results came in, but my brain is useless recently, I can't do words at the end of some days.

Rheumatoid factor 27

IgA 3.79

IgM 0.85

IgG 11.6

ANA IgG pattern1: 100 Positive; Centrosomal in mitotic cell

ANA IgG titer Final titer 1: 100 Positive

CCP IgG QN 24

[helixhelix in reply to Eestihideaway]

Oh ok, I see why doc not 100% sure. RF and CCP very weakly positive and only IgA a fraction outside normal range (don’t know what centrosomal pattern is tho’, only heard of centromere). So you’re pretty borderline/early.

[Eestihideaway in reply to helixhelix]

Thank you for looking. Centrosomal could be a bad translation, I live in Estonia. I've pottered today and got lots of seed trays filled up, so feeling good to have something done. Will take a tablet again tomorrow if I'm still in pain.

It's looking like regular hospital appointments will be opening up here again shortly, and the rheumatologist wants to see me again within the next few months. I can email her if I need to.

Thank you again for your time.

[helixhelix in reply to Eestihideaway]

The way it was explained to me was that just taking an anti-inflammatory for one day will mask the inflammation enough to reduce pain, but not actually suppress it. So you end up yo-yo’ing with inflammation coming and going. If you take it for 3-5 days it has a much better chance of reducing inflammation levels to the extent that it can take weeks for them to build again. So I do so even if by day 2 or 3 the pain has reduced a lot, and it works for me. 🙂