6 month check with rheumy

[IdasMum]

I had my 6 monthly check up this morning for PMR and RA. Drs have decided my PMR had diminished and been overtaken by RA. I came down to 9mg from 10mg over last 6 months, I feel like this is a little too low but am waiting to see how things pan out as Mark begins to pick up the slack. He's 5 weeks post TKR (2nd in 12 mmonths) and doing really well). I told her I was not planning on reducing more this time. I think she was impressed with my assertiveness.

I may have mentioned that it's difficult in French. She's very caring but makes assumptions about my understanding. I always write her a letter using an online translator. Today we're back in masks, so lip reading was out of the equation. My CRP was up last time. I am not sure but think I heard her say that the PMR hasn't gone.

Am currently coming to the end of being on call for Mark, he's doing really well but the last couple of months have been tough with regard to job share and lack there of. So, I am tired and in more pain due to doing more things he normally does.

I told her how painful and weak my thumbs are and that dressing is difficult and I drop things more frequently. I told her about my thumbs 6 months ago but this time she took time to have a thorough look. She says my thumb/forefinger on rt hand are deformed. I cannot see this (I guess one doesn't notice a gradual change). She's given me a px for a a thermal thumb support thing to wear at night. Not something I can easily find in a local pharmacie so we'll have to head into the city I think.

She's also given me a px for physio. I'd be interested to hear your thoughts on hand physio and how helpful it is? I feel really lucky as I am able to jump into OH's physio appointments. Servane (we think she's about 12 lol) has a student working with her so they will share OH and I for the same session. If not I'd have to wait until January.

Bonne soirée

[PMRpro Ambassador]

Why not try a visor type mask with a scarf round the bottom as an extra?

My village pharmacy will source things if they exist.

Physio for dodgy thumbs is probably very useful.

Frankly, I really couldn't care what the label is. I want the treatment that works best to mitigate the problems I have. So if 1 or 2 mg more pred than what I might need for PMR sorts whatever the other problem is - why say I need something different at its full dose - do you see what I mean?

[IdasMum in reply to PMRpro]

I see what you mean!

I have a feeling (memory is poo this evening) that I gave myself an extra 5mg for 5 days a couple of weeks back. From memory they didn't help much. Might test again to be sure.

[PMRpro Ambassador in reply to IdasMum]

If it needs that much - probably not good.

However - what are they suggesting for the RA?

[IdasMum in reply to PMRpro]

She's suggested Arava (Leflunomide (ARAVA) if I have not improved in next 6 months.

I cannot imagine I will have improved as the current treatment has been ongoing for at least 18 months (give or take a 1mg!)

[PMRpro Ambassador in reply to IdasMum]

Well why not try it NOW - it is a recognised steroid sparer in PMR so not totally out of left field. Or any DMARD. People with PMR diagnoses improve their pred dose using MTX, LEF, hydroxychloroquine. It might not help the PMR. or it might. And LORA (late onset RA) can present identically to PMR, no way at all of distinguishing it at the start, So if she thinks it is now RA - instead of or as well as is immaterial - she should be looking at DMARDs.

Here there would have been no problem about trying Actemra with a query combined dx, What is the view in France about trying something that might work?

[Pixix]

I have very bad thumbs, especially the right (either OA or RA, Dr thinks RA, but waited two years for appointment now). I get steroid injections directly into the joint. I wear a splint every night & most days! Life is interesting..if I pick up cup with right hand, the pain is instant & the cup drops, if I’ve picked it up at all…and the tremor in left hand means the cup goes flying & the contents go everywhere! I can’t carry food or drink around anywhere, & straws are becoming part of every day life!! I had 4 appointments with a hand specialist at the hospital, for splint supplying & to be taught the physio type exercise uses I need to do every day, or my thumbs will ease to operate! They are too painful some days, but I manage them every day, except autumn & winter. She showed me how to realise if they are too painful…ie when not to do them. After 4 appointments she pronounced me good to go, but I can go back if I need to. All online outlets sell splints, but some are better quality than others.

[IdasMum in reply to Pixix]

Wow, it sounds like you're way ahead of me with all that.

I am struggling today and didn't use them much yesterday. I am sure things will improve for me.

Thanks for sharing.

[Pixix in reply to IdasMum]

I am going to talk to my Dr about the wax baths mentioned in this post, too. Waited two months to see him, though, & this morning I learnt that there’s a waiting list for steroid injections!! Grrrrrrgh!

[S4ndy]

My friend has hand problems, osteoporosis combined with repetitive strain from too much knitting! She finds the warming thumb support very useful. Hand physio will be great too as it will help you keep the hand moving in the correct way.Another nice thing for the hand is a paraffin wax bath. You literally dip your hand into melted paraffin wax and take out your hand then let the wax solidify before removing it. You can find this at beauty salons. You can also buy kits on Amazon if you find it works for you.

[IdasMum]

Thank you. Wax bath sounds good!

[PMRpro Ambassador in reply to IdasMum]

A friend got herself one - but one like the physios use, not a for the masses sort. She has really had her money's worth out of it!