Sorry, it's been a while.: I hope you've all been... - PMRGCAuk

PMRGCAuk

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Sorry, it's been a while.

IdasMum profile image
12 Replies

I hope you've all been coping with the heatwave. and that some of you are enjoying better health.

I haven't posted for several weeks (months even). I've been plodding on and dealing with the flare I spoke of last time I was here (I think)

A few weeks back went back up to my original dose of Mx to address the vague underlying symptoms of PMR and this has worked I think.

3 weeks ago I saw my rheumy who seem in accord with how I am managing my journey and complemented me on my knowledge ....of course this is all thanks to you lot!

She was not unhappy that I am struggling to get back to the mythical 9mg and told me the Mx was better than steroids in terms of potential side effects (a new one on me).

Anyhow....this last 3/4 weeks I appear to be doing okay. I cannot remember when I last ran out of spoons. I seem to cope okay with busier days and just need a half hour sit before carrying on. I have started another taper to 9mg....will take a few weeks and as long as it works out I am happy.

CBD oil/paste are still working well for Arthritic pain....I rarely need to resort to Paracetamol.

We had a lovely 8 day visit from my family which included 16 month old Thea. Was so good to spend quality and quantity time with her and them. We have tiled floors, she enjoyed marching up and down on them in her bare feet and sometime in the inflatable pool with her parents.

She also enjoyed walking up and down the slightly sloping driveway...

Not once did I run out spoons....got a little tired at times but never overwhelmed.

(Just working out which of the many photos I took to share with you).

I made a large Pork Pie yesterday, no loss of spoons and today we made chutney.

Maybe I am on the mend (I HOPE SO!)

Bon nuit everyone.

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IdasMum
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12 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good to hear things are coming along okay for you.

Interested in your comment about CBDoil/paste sand Arthritis. Have just got some capsules I’m going to try for my Osteoarthritis- hope it works for me! Would be nice to get off the paracetamol- at least for a while!

IdasMum profile image
IdasMum in reply to DorsetLady

CBD is works well for some. Can take a while to kick in and it's best to start low and slow.

Hope the capsules work for you.

SheffieldJane profile image
SheffieldJane

Hello IdasMum. Lovely to get a positive update from you and such a sweet photo of Thea into the bargain. You give us all hope. I would like to hear from a Methotrexate user, I particularly want to know how it helps you?

IdasMum profile image
IdasMum in reply to SheffieldJane

Hello, thank you.

I am not sure I can report how Mx helps me apart from the flare seems to be under control and I am now able to contemplate lowering my steroid dose.

I know they are allegedly steroid sparing so am hopeful they will allow me to go down lower than 9mg which is the lowest I have been.

Suet3942 profile image
Suet3942 in reply to IdasMum

I’ve been on mx for 2 years now but still can’t get below 8mg pred without getting buttock and pelvic pain. Might come off it and see what happens.

Telian profile image
Telian

Just to say you do seem to be on the mend - pleased the CBD oil works for you, haven't really heard of it but will look into it. Lovely photo of Thea, sounds like you had a lovely time with family. The pork pie sounds yummy and home made chutney too - well done all round I would say..

PMRpro profile image
PMRproAmbassador

" told me the Mx was better than steroids in terms of potential side effects (a new one on me)."

She thinks does she? Wonder if she has ever tried either! mtx seemed to cause some normally regarded as pred side effects that I had never had appear and sweats and sleeplessness worse. Plus all its own ascribed side effects!

All sounds promising though, long may it continue.

yogabonnie profile image
yogabonnie

love this little one!!! thanks for that day brightener!!

So glad you are keeping those spoons!

bunnymom profile image
bunnymom

Last time we saw Thea she was a baby. Time marches on. Glad to here your energy is improving. I did have one day last week I felt almost normal. Whatever that is.

karools16 profile image
karools16

Oh! So glad to see the little one again! Little Barbie girl...adorable!! Am also interested in the CBD oil for arthritis.

markbenjamin57 profile image
markbenjamin57

Well Done IdasMum!

Glad to see you back here - and with Positive News. A motivational message to Us PMR/GCA Lot that things CAN get better on the Journey? Fingers crossed for your on-going progress.

In the meantime: can you please send one of your home-made Pork Pies (size: Extra Large) for me and Tedski to get our Gnashers into? Payment by cash in the post - no questions asked... ;-) :-D

Best wishes

'Uncle' MB

IdasMum profile image
IdasMum in reply to markbenjamin57

Haha.....not sure how well Ex Large Pork Pie will travel. Next time I will keep in mind your offer and come up with a fair deal :D

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