My rheumy tele-consultation due to Covid.

[IdasMum]

HAPPY NEW YEAR. Hope you all enjoy much better health in 2024.

An update.

A couple of weeks back I had a tele-consultation with my rheumy as I had Covid. This was my 1st encounter with Covid after 3 years and 8 months!

On the tele-consult app I was able to upload a brief resumé of my last 6 months. This included my 2 injuries, Mark's knee op and explained why my CRP was so low in the last blood test (I'd increased my steroids to cope with the consequences of the injuries etc). The tele-consult was difficult it being in French, she was wearing a mask and sitting almost in silhouette as she had a light box behind her.

She asked me (I thought) about the Covid and I told her we were getting better. I later realise, after reading her letter to my Dr that she thought I was alluding to my PMR. I also realised, after the call, that she hadn't read my resumé, so had no idea how difficult the last 6 months have been.

I agreed in the call to consider CONSIDER! a reduction from 10mg to 9mg. The prescription she has written me reflects this change. I am now px'd 9mg per day. I'm not happy but decided to give it a try (again!).

I tested negative 4 days ago and have a tail end cough/painful throat. I also had Conjuctivitis (I understand this is one of the potential Omicron by products) which was treated with anti-biotic drops. My eyes are better than they've been in months.

Last Weds (6 days ago) I dropped 1mg. I had planned to do the same this Weds (tomorrow) and again on Saturday. Yesterday (Monday, 5 days after the drop) my energy levels were low and today I am feeling the same and aching. Getting up from sitting, holding heavy things when cooking is difficult. I expected the feel the drop sooner.

I plan NOT to continue to 9mg yet, will wait another month, I think I have enough spares to bridge the gap in the px.

Photo: We harvested our Kiwi fruit the other day. Had planned to take them to Restos de Coeur this morning. That's gonna have to wait until next week.

[PMRpro Ambassador]

He'd not be standing outside with the kiwis if he were here - -6C this morning and still struggling up to -2C at midday! My boots are warming up on the underfloor heating - I have to go out, I need milk. The only non-negotiable in this house - I have soy m"lk leftovers from the daughter but no ...

This may sound stupid - but why wear a mask if you are video-consulting? Not acceptable for an older non-native speaker. I speak fluent German and hear really well and a mask makes me struggle even f2f.

[IdasMum in reply to PMRpro]

Mild, windy and wet today. Kiwi's harvested a few days ago.

Yes, she wasn't thinking as she always masks in her consulting room and she was mid consulting. I pointed out during a pause that she was sitting in shade and had a black mask on. She turned off the light and dropped her mask which was good but sadly too late. It was too late when I realised she'd not read the resumé. Tant pis as they say here (too bad).

I hope you can stay warm once you get home.

[PMRpro Ambassador in reply to IdasMum]

Yes - one of the French colloquial swear words I know ...

[Bluey-1 in reply to PMRpro]

I have soy milk leftovers…but no…

Oh Pro, you do make me laugh which is much needed. Amidst the Covid here with my only symptom left being fatigue I need a chuckle. Maybe the infusion I had helped, I had fewer symptoms than husband - am still positive though. It’s wall to wall miserable rain here.

[PMRpro Ambassador in reply to Bluey-1]

There are vegan things I am happy about, which is as well as whenever the vegan daughter is here, I always end up with a fair bit in the fridge. The lentil salad will be added to the shopping list, that was good. But tofu and soy milk I draw the line at. Oat milk in porridge is great - but now she is gluten-free too, she is being more selective about m"lk too. She demanded apples and pears - then wouldn't eat them as the texture wasn't right! The pears may be ready to eat by the end of the month.

[Bluey-1 in reply to PMRpro]

Poach the pairs in amaretto now - delicious with a spoonful of cream/ice cream/soy equivalent. I added a vanilla pod too. This was my practice easy dessert for our contribution to the NYE dinner which we couldn’t attend. They last a few days in the fridge.

[PMRpro Ambassador in reply to Bluey-1]

Haven't got any amaretto, Red wine could be a substitute, very middle ages British. There are a couple of vegan ice tubs - one of sorbets from the real gelateria so worth eating. The other is OK but ultraprocessed.

[Bluey-1 in reply to PMRpro]

Red wine would be good.

[Oboes22 in reply to PMRpro]

Pears in orangejuice and cinnamon are delicious. Must try the amaretto. 😊

[Rugger in reply to PMRpro]

My OH is vegan and I'm with you 100% when it comes to soya milk!

I made a lovely nut roast for Christmas!

[PMRpro Ambassador in reply to Rugger]

We went to a friend here - all diets represented including my daughter being vegan and gluten-free!!! The nut roast thing she made was gorgeous - not a loaf though, quite soft, more like a good haggis.

[Suffererc in reply to PMRpro]

Well consider if you are deaf and lip read when they tell me to take of my mask but they want to still wear theirs 😂😂😂😂😂

[PMRpro Ambassador in reply to Suffererc]

Nuts ...

[DorsetLady PMRGCAuk volunteer]

Oops... and don't be dropping Pred for a while... eke out your spares.. 😊

[waltztherapy in reply to DorsetLady]

I was told to drop by only half a mg of pred every 4 weeks since 15mg dose, and from 7mg, drop the half every 6 weeks. Now I'm down to 6mg with a bad flare lasting 3 weeks so far, I feel I should either stay on six for longer, or go back up to 6.5 mg. Toughed it out before and its always worked, but I guess it's trial and error. Any advice welcome please.Kind regards, and a happy, successful pain management new year to everyone.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

A good point to reduce by only half a mg, but it’s still no guarantee that you won’t go below the level your illness needs. Just makes it easier to ascertain what dose was enough.

You may find a return to 6.5mg sorts it out. Really depends how much inflammation has built up over 3weeks. If the increase doesn’t show an distinct improvement within a week, then treat as a flare as described in this link -

healthunlocked.com/pmrgcauk...

-dropping back to 6.5mg rather than 6mg.

Good luck

[waltztherapy in reply to DorsetLady]

Many thanks. Much appreciated.

[PMRpro Ambassador in reply to waltztherapy]

The theory is fine - BUT however slowly you go, you won't get below the dose of pred you need to combat each day's new batch of inflammation. The dripping tap is delivering an amount of inflammation - if the pred you take is only equal to 90% of that amount, the leftovers each day will mount up and eventually be enough to cause symptoms. You have to get the right balance.

[waltztherapy in reply to PMRpro]

Yes, a tricky titration job it seems.Thanks for the warning.

[PMRpro Ambassador in reply to waltztherapy]

Exactly - and I get the impression a lot of doctors have forgotten about the titration technique!!!

[IdasMum in reply to PMRpro]

My rheumy just change the px to 9mg not allowing for tapering. I will write to her once I've had a blood test!

[waltztherapy in reply to PMRpro]

It looks that way doesn't it.Thank goodness for you folk with your advice based on knowledge and experience.

X

[IdasMum]

Talking of Vegan, I've just finished watching this bit.ly/3H8PfGs

[PMRpro Ambassador in reply to IdasMum]

Not having Netflix, what was the conclusion? My granddaughter's severe brittle asthma is much improved, almost gone. The daughter's various ills are also much better without dairy and without gluten her thyroid antibodies are back to normal range. Her reaction to a plate of normal spaghetti last week was a proof she needs to stick to it! Served her right, she "didn't want to make a fuss", the kitchen offers g/f penne, but the spag was too tempting!!

[IdasMum in reply to PMRpro]

Vegan won hands down for health and for the environment.

The trial was American based and shared much info about the meat/fish industry that was very disturbing. I had to remind myself that US food security/safety standards are lower than that of UK & EU. I will pay more attention to where our Salmon comes from and ignore the 'health halos' used in marketing.

Health wise there were problems maintaining lean muscle as it's hard to eat enough when your diet is plant based.

Overall the emphasis was on the need for us all move to a more plant based diet.

[PMRpro Ambassador in reply to IdasMum]

I eat a lot of veggies and only a small amount of meat at any one time - rarely more than 100g if that, Not a massive amount of eggs, got out of that habit when the UK demonised eggs. Oodles of cheese. But it is almost all locally sourced except cheddar - and one of the things I love here is that the local Spar has a majority of veggies from Italy, The other supermarket I use has a lot of Austrian organic produce, also not far away from me.

I still maintain vegan substitutes are bad for the environment - manufactured UHP stuff however you look at it. Chemical "butter" and "cheese". Animals are important here to keep the traditional landscape here and they do have pretty happy lives!

I have found a lot of Italian vegan recipes from the south, the cucina povera, using chick peas and they are grown here too providing you check the labels.

[Rugger]

What beautiful kiwis!

[IdasMum]

As I was watching the Netflix doc I was pausing and watching a Zoe podcast.

youtu.be/xGY05t_sImc?si=N_t...(Not working as expected?)

On the Nflix doc Miyoko Schinner was perfecting Vegan cheese.

It is/was looking good but, on the ZOE podcast Tim Spector talks about Casein,

"Cheese may be mildly addictive due to its protein casein, which your body breaks down into casomorphins. These compounds attach to dopamine receptors in your brain, possibly triggering cravings for similar foods. However, cheese is nothing like addictive drugs and isn't dangerous in any way." Healthline.com

I imagine that the very best Vegan cheese will not hit the Dopamine centres so, a little like low fat foods, there will be something significant missing.

(She's making cheese using Cashews, she states that Cashews are environmentally friendly. I don't think she has seen the hands of the women who process them!).

metro.co.uk/2019/04/04/wome...

I am not a cheese lover 😜

[PMRpro Ambassador in reply to IdasMum]

Bit of a waste living in France then!!!! In my experience so far, it is the taste that is missing!!! I did find a very nice spread here but it is sort of the mildest of mild! My daughter goes into raptures about some of the commercial cashew stuff but doesn't do it for me!

[IdasMum]

I rarely drink wine but live here for other reasons lol

[HeronNS]

So sorry you had to content with covid on top of everything else. Some people here may have become aware that I've collected a great deal of (so far not first-hand🤞) information about covid and its potential effects. This is why I want to advise you to continue to rest a lot - I hope you rested throughout the time you were testing positive. This is one of the ways that people can reduce the risks of developing so-called Long Covid, which for some I think feels an awful lot like PMR in its pre-treatment phase. Those with experience say it really is important to rest, extreme resting if you will!. My daughter had covid last year and she described what she did (and has told others in the family who've also been ill) was to pretend she was a rock, lying in a dark place. For the time being please don't try to get back to your usual level of activity for a few more weeks. All the best for a better New Year! 🍀

[IdasMum]

Thank you Heron.

Our normal levels of activity are pretty low and we did rest during the positive phase.

Difficult to know what is post Covid and reduction in pred right now. I'll go for more extreme resting, it's sounds exciting. Bonne annéé 2024

I have a friend who messaged me today,

How are you? Fully recovered now, presumably, and able to enjoy your new house deco?

I was ill with a bad cold before Xmas but carried on and entertained 8 on Xmas day and 9 on boxing day. By the end of the day, I could hardly stand. I went to bed for 4 days and felt shit. I am now up but feeling pretty weak and wan. Hopefully I'm really on the mend now. I'm taking baby steps. I do something, rest, do more, rest. I've hated being that poorly.

My new dining room is great. It was finished just before Xmas. That keeps me going as it gives me hope for redoing the kitchen and then the sitting room. I'm hoping to take my Xmas decorations down today. I haven't felt able before now.

OMG, how blind and stupid people are! 😱

I found a way to respond which was toned down from my initial thoughts,

No, sadly not fully recovered but tested negative last week. Personally I am rumbling on with a sore throat and Mark is still coughing a bit. Both still tired. My poor immune system slows down any healing. OMG re your cold! Did you test for Covid? Hope you guests have robust immune systems! 😱.

She says she tested x3 and was negative. Completely missing that she was sick and infectious whatever she had. 🤕 I give up with some people.

[HeronNS in reply to IdasMum]

Interesting that during a time when there are any number of rather nasty infections going the rounds it has become acceptable to spread germs. Warning: Old person rant coming up. When I was a kid if you had a cold you were kept home from school, maybe even put to bed for a day. When my kids were little we did send them to school if they felt well enough. Now I feel guilty about that, because it may have led to today's let 'er rip no matter what....

Glad you are feeling a bit better and making sure you continue to recover. Happy extreme resting! ☕