Newbie, 20 months in on steroids, pmr. Psoriasis

[Youngforpmr]

Hi all. I’m 56 . Discovering from the posts on this fantastic forum that I’m not that young at all for PMR. Not alone. Worked all the way through this, full time and London commute. Started on 25 to 20 tapering to 9 after 15 months . Flared back to 12 and now at the 7/6 stage. Flared trying 6 for 3 weeks . Xmas not help. Different pains and stiffness at top of leg and lower back. Went back to 7 in Jan and this forum helped so much. Hadn’t realised just what slow means! On 7/6 again. Settled after some Florida sun - thought had missed the snow! Good rheumy. Always said to me go back up if the symptoms return . Now I am below “toxic” ..😀- ( I didn’t realise I had been) he wants me to go very slowly. I’ve had a lot of ankle foot pain over last 8 weeks. Have psoriasis. Badly affected after higher steroid withdrawal but sun helped. CP is now 11. Seeing rheumy soon - Forum made me realise being tired , sudden exhaustion, not being able to run around as before ( catching that tube) , busy social weekends a problem, is all part of this. I have an illness. Taken me a while to accept - but work with it. Find it hard to explain at work as just seems to me I’m moaning! Doctors all start with the 2 years and burn out- that won’t be me, but I’m so much better than before steroids , so just hope ankle thing is not psoriatic arthritis. This forum has helped me so much! I don’t feel guilty spending Saturday morning in bed! Even got the other half bringing me tea! Should have joined at beginning. Thank you.

[DorsetLady PMRGCAuk volunteer]

Hi Youngforpmr,

And welcome...albeit a little late!

Glad the forum’s been of help, and don’t every feel guilty about breakfast in bed on a Saturday, after working all week you deserve it! As the saying goes.

If you can, take things a little easier (not easy when you’re working I know!). And as you are now below the “toxic” level - don’t you just love doctors! Go slowly, slowly and even more slowly .....your adrenals now need to start working again...and that’s not always a good time.

Stay with us now...we’ll see you through.

Take care.

This might help your work colleagues understand a little better

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Welcome!

You have mentioned the elephant in the room - is your rheumy SURE it is not PsA? Or another spondylising arthropathy?

Would he like to define "toxic"?? That's a new one on me!

[SheffieldJane]

Hello and welcome, Youngforpmr.

You seem to be doing pretty well. It does help when you’ve got sensible doctors. I am stalled between 6 and 7 too. It’s a tricky stage like 10 can be. This time because your own Adrenal system has to begin to function.

I have Psoriasis in the ears and on my feet. The sun and heat make my feet flare up. It’s so annoying because it’s just when you want to get your feet out and wear sandals. Mine looked red, scalded with toes like swollen sausages on a recent Australian visit. Cortisone cream just controlled it a bit. Now I am home, my feet look normal, if a bit dry. This condition pre-dates PMR by a few years. I queried Psoriatic Arthritis and was told that it wouldn’t be so contained. My feet were better on the higher doses for PMR last year, I thought it had gone. My ears are still much better. I have recently developed aching heels, especially on the right. It hurts lying in bed with the weight of my feet. My ankles “ give” painfully on the stairs - enough to make me cry out. This can be embarrassing when my husband is working from home and is on a conference call and suddenly there is a blood curdling scream. This is recent too although it has happened with my knees for a long time. I suppose I will have to mention it to the GP but whenever I go, it feels like a waste of time. Let us know if your ankle problem is explained.

I am amazed that you’ve managed to commute and work throughout. You must be made of sterner stuff than me. As for a social life, what is one of those?

This forum has been a lifesaver for me. There is just so much knowledge and the culture is kind and supportive. Stick with us.

[Youngforpmr in reply to SheffieldJane]

Hi SheffieldJane. It was never suggested I cut down by anyone or take time off so I kept carrying on feeling euphoric with the high doses! However as I came down it was hard and the. difficult for me to understand as I was supposed to be getting better! At our age it can also be aches and pains they say! Now I can see what has been going on and explains why some days I would say bye to everyone and be completely fine and then be floored in the morning and have to stay home. Usually tracked back to overdoing it somewhere eg a dinner out! I’ll keep you posted on the foot and psoriasis also. Ten was an issue and will see how I go now. I will use Dorset lady’s link to share with friends and work. Thanks again.

[PMRpro Ambassador in reply to Youngforpmr]

The NE PMRGCAuk group based in Gateshead has a DVD called "You are not alone" which was compiled to explain to family and friends - and doctors and patients if it comes to that - what PMR and GCA do to us.

[Ruadh in reply to SheffieldJane]

Apologies SheffieldJane - this should have been directed to Youngforpmr :-

Quote : "I have recently developed aching heels, especially on the right. It hurts lying in bed with the weight off my feet."

Sounds like it may be a calcaneal bone spur on the heel and possibly also planta faciitis. Most painful. I have the same problems, especially at night !

Suggestion, if possible, get an appointment with a Podiatrist. Otherwise, try those heel protectors, made for the 'job', any decent pharmacy will sell. Stay clear of high heels !!

As for ankle giving way, arthritis ? Ditto, same problem here - so *dislike stairs ! Take care -

[Youngforpmr in reply to Ruadh]

Thank you Ruadh. Yes the high heels sit in their boxes never to return! But the flatties can cause issues also, so I’ve been told to get into trainers which have never been “ my thing” but needs must! Will wait to see what rheumy says about the ankle. Thanks again

[Ruadh in reply to Youngforpmr]

Not flatties. There is no support in flats. Must have good fit, good Achilles ankle grip, firm, support footwear. There are some great 'not-trainers' around - really smart - have a look at the Rieker footwear - rieker.co.uk/rieker-ladies-c2

If going to use the heel-comfort then ensure there is place forit to fit comfortably inside the shoe with your foot in place. So many times, these little helpers are great but, diff to use as well as wear ones shoes at the same time...OK with slippers, but !!

PS A bit of info here, saw on the Rieker site : rieker.co.uk/what-foot-prob...

[PMRpro Ambassador]

The psoriasis wouldn't be contained? You can have PsA without even ever having had a rash so I struggle a bit to see how that fits in...

[SheffieldJane in reply to PMRpro]

To be fair my GP has never seen my feet at their worst because I tend to be abroad in a hot country. There doesn’t seem to be all that much they can do except for the dreaded Methotrexate and its like. I ‘m not sure that I have the stomach for another disease and drug journey. Everything is pinging with pain in the freezing cold and damp. I’ll see how things are when it’s over. I expect what I have got is fairly mild and static and hope the foot pain and ankle weakness is just a winter thing.