6 monthly rheumy appointment for PMR & RA

[IdasMum]

I had my 6 monthly check up this morning for PMR and RA. Drs have decided my PMR has diminished. I came down to 9mg from 10mg over 6 months, I feel like this is a little too low but am waiting to see how things pan out as OH begins to pick up the slack. He's 5 weeks post TKR (2nd in 12 mmonths) and doing really well).

I may have mentioned that it's difficult in French. She 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.

I laid it on a bit this time and told her I was unwilling tp reduce my steroids again for 6 months. My CRP was up last time.

Am currently coming to the end of being on call for OH, 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.

Thanks for listening.

[stbernhard]

Bonjour, it sounds like you have a good nurse/doctor looking after you. My recommendation is to do all the physio you get offered. It's extremely rare that exercise will make things worse especially if it's supervised. Bonne chance!

[Runrig01]

I was put on prednisolone for polymyalgia and GCA years ago, as it is the only treatment for both. I personally would urge anyone on steroids to find alternatives where possible.

I had a severe stroke in 2018, age 52, which was found to be due to an adrenal crisis. I was then diagnosed with severe adrenal insufficiency, my adrenal glands have atrophied from taking prednisolone long term, and will never recover. It means now any stress, good or bad, can suddenly make me very unwell, and the only thing to stop the downward spiral is taking more steroids. This can be taking hydrocortisone tablet, as prednisolone is too slow to absorb in these situations. I have to carry an emergency intramuscular steroid injection, which I have to administer if I’m vomiting, injured or serious illness. They are not fun to administer, as they are much longer needles than biologics, and family have to be trained too, as you can lose consciousness fairly quickly. If I inject I have to call an ambulance, and go to hospital for IV fluid and steroids. There is no way of knowing who will succumb to this side effect, adrenal insufficiency. It interferes with every aspect of my life, a simple argument can trigger a crisis, and when exposed to stress, if your lucky you will start to improve after 30 mins, as opposed to healthy adults, who’s body responds in milliseconds. I was taking 4mg of Pred when I had the stroke. My cortisol was undetectable, and when the tried to artificially stimulate my adrenals it dose to 72, whereas it should be over 450 in the morning, This confirmed my adrenals are atrophied. I’ve recently discovered as a result of the AI, I also have several other hormones that are undetectable, and cause fatigue and issues with gaining weight around the belly, most I can’t supplement due to the stroke, do have to accept life long fatigue.. So whenever there is an option, like using an nsaid, I urge people to try a different treatment. Unfortunately it’s a side effect of pred that is rarely discussed, although it is the very reason you have to taoer steroids slowly, to try and nudge the adrenals to wake up. Sorry for the length of this reply, but I feel it’s an important side effect that people should be aware of. I’ve had to use my injection many times, and often have needed someone to administer, as I was losing consciousness fairly fast and shaking making it challenging to inject. This may help you understand why Drs are keen to try and get patients off steroids. Hope things improve for you soon.

[IdasMum in reply to Runrig01]

Oh! Really sorry. Your sitiuation sounds really horrible.

[oldtimer2]

It seems, from what I've read recently, that other drugs for PMR may be indicated - methotrexate has now been used for some time and I see that prolonged PMR is being treated in trials with biological treatments. This can only be a 'good thing' as prolonged treatment with steroids has left many people unable to come off them altogether later becasue of adrenal suppression.

I've also noticed that often the inflammatory markers don't always show the degree of pain and siffness that is going on once pople are on steroids and it's not always possible to convince the clinician that you're still having stiffness and pain. It may not just be the language barrier!

And exercise in the pool in really wonderful for it!