How I looked 10 months after diagnosis......the term is what Professor Dasgupta used .....I was covered with psoriasis too. Did you look like this?
The Budgified Look!: How I looked 10 months after... - PMRGCAuk
The Budgified Look!
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Telian
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Hi Telian! How wonderful to see what you look like... "warts and all!" Or shall I say, psoriasis and all! KNOW THAT YOU ARE BEAUTIFUL! Screw the psoriasis! It's temporary!
Your heart and soul are eternal!!!!
I am only 6 months in on this "road to hell," and I've not experienced this... yet! I do have really, really, dry, alligator skin all over, and the skin around my fingers is not only dry, it's cracked open and occasionally bleeds! Which is great, especially since I wear 9 rings... and the blood does a really good job of attracting attention to my lovely, silver rings!
Again, you are beautiful!
Telian in reply to
You are so kind my dear but no not in this one - I'll take the compliment though, you know how to make someone feel better, I'm not like this now - I think - you've seen me the other day with James Martin?
If you haven't experienced the chubby chops now you probably won't, this photo is ten months on from diagnosis and I was reducing - think I was on 30mg at that time - I was worse initially. I was browsing my Dropbox and found it and instantly I felt the pain by just looking at it. Never want to go there again.
I used to wear earrings, rings, bracelets and necklaces but had to stop, haven't plucked the courage to try my pierced earrings since. If you are wearing 9 rings it might be exacerbating your skin, not the cause but try without them and use a non scented hand lotion see if the dryness improves, don't let it get worse or you will be in agony.
Thank you Mel, my friend.
in reply to Telian
OMG, of course I saw you with James.... I am so sorry! I'm an idiot! I do have the chubby chops... my face used to be oval shaped and narrow, now, not so much! It's the thick ring of fat I have around my neck, under my chin, that freaks me out!
Anyway.... WE are both beautiful, amazing, strong, spirited women and we deserve to be celebrated!
Thanks for tip about rings and lotion... the cracking is all around my nails even though I use a prescription cream... my hands are pretty good but around the nail is horrible!
Good night my friend!
Xxx
Telian in reply to
Don't you worry your pretty little head, it's the steroids that make you forget, you've got a better excuse than me I'm only on 5mg so what's mine?
Just hold the thought you will return to normal once on lower pred - that is a promise!
If your nails get worse show the doctor, might need a different treatment, hope they're not becoming infected. You're not diabetic are you?
Night night - sleep tight!!! if possible!
x
in reply to Telian
I often think of my "Pred Brain," as a spaghetti sieve; most of the solid, heavier stuff stays in place... but the nutrient infused liquid goodness.... escapes through tiny little holes, never to be seen again. : (
No, I'm not diabetic... yet. : )
Yes I will keep an eye on them, thanks!
ConventCassie in reply to
Mine used to crack there-most painful!!! I put eucerin hand cream on twice a day. (Only the top of my hands) Hasn’t bothered me since. Hope that’s available over there. It was agony to reach inside my purse for anything.
in reply to ConventCassie
Yes, it is! ...but which one????
Eucerin Dry Skin Intensive Lotion 10% W/W Urea Treatment Lotion 250Ml?
Eucerin Complete Repair Emollient 10% Urea 2 x 400ml?
Eucerin Intensive 10% W/W Urea Treatment Cream 100Ml?
Eucerin Eczema Relief Skin Protectant Creme 226 G?
Eucerin Ultra sensitive care soothing skin dry 50ml?
ConventCassie in reply to
Why is it so hard to put a picture on here? Mine is “Hand Cream” Daily Hydration moisturiser & sunscreen. Fragrance free DRY HANDS 2.7 oz. (Cream is thicker) and I wash my hands all day long.
in reply to ConventCassie
Hi, I don't think you can put pictures on comments.... only on your initial Post. So because this is Telian's post, she was able to post a photo of herself, but we can't put photos of on our comments. It's archaic, I know!
Thanks, I'll check it out!!!!
in reply to
Did you try canestan cream on your finger ends? Thrush cause me to have the Wicklow effect and if it's a touch of dry skin/psoriasis type drying canestan can be used.
Ps...how did I know you were a skull image girl...yes I saw the scarf. Hooe you are still buzzing in a good way post (happy) birthday!!
in reply to
Hi Poopadop, No I have not tried it... had not heard of it! ... but I just Googled it and will be buying a tube today! Thank you!
Ohhhh yes, I LOVE skulls!
Wish I could post a photo here, as I just changed the bedding yesterday and my poor husband is now sleeping (or should I say trying to sleep!) under a pastel, coloured duvet, with life size Día de Muertos (The Day of the Dead) skulls printed all over it! Obviously paired with a purple fitted sheet and pink pillow cases! Very manly! Hahahahahahaha
Yes, thank you... still buzzing! *as she looks over left shoulder* ; )
💀💀💀💀💀💀💀💀💀💀
CelticPMRGCAuk volunteer
Telian, no to the psoriasis but yes to the swelling, with my eyes almost reduced to slits in the very early days on 40mgs. I didn’t recognise myself in the mirror. The only godsend at the time was that I almost felt too ill to care! But the good news is that the old you is still there and will slowly re-emerge as you reduce the steroids.
Hi Celtic
Thought I couldn't be the only one, this is an old photo I came across, I am back to my old self now thank goodness, and you are right was too ill to care at the time - in fact I couldn't see that well as the eyes were so sore - good job really. Are you still on pred?
Telian, I'm one of the lucky ones on zero Pred, PMR and GCA having gone into remission over 5 years ago now. It did take 5.5 years on steroids and 6.5 years in all. Hope you and everyone else 'looking in' will join this club soon - DL, myself and others are all waiting to welcome you!
in reply to Celtic
That's fabulous Celtic... I did not know (or remember) that!!!!
Hip hip hooray for the "ZERO PRED CLUB"
Just so you know, mamici, the light is at the end of the tunnel - that’s your goal, and, as I said to Telian, a big welcome awaits from those of us already in the club!!🌹
in reply to Celtic
Thanks Celtic! I do feel the light at times and God knows Good_Grief has done her best to drill it into my very thick skull... it just sometimes feels like it's a million miles away! ...but you are right! It is my goal! I'll get there! xxx
You WILL, I promise.🌹
A very long tunnel too!!!!!!
I know, Stella, with a few too many twists and turns at times, too, but just know it’s doable unlike many other nasty autoimmune problems out there.
Thanks Celtic !
Hey, as long as the light at the end of the tunnel isn't another train, I'll take it...
Hi Telian,
Yes I certainly did! In fact my eyes disappeared a bit more than yours have I think! - keep the faith, I am 3 years in and down to 6/7mgs and my face has gone down lots, still look fuller and a little more jowlier (if thats a word!), but not so bloated and certainly more me - so just concentrate on getting better, resting and being kind to yourself - you will come back to 'you' in time.
Best wishes
Hi Lesley
It's a relief but I'm not like this now, just came across the photo and always wondered if anyone else was like it, I'm 4 years down the line now - that was me in the photo I posted last week with James Martin. So now I can say to you, yes there is life after bloating, never want to go there again though.
Pleased you are down to 6/7mgs you will be nearly there with the bloating once you get below 5mg.
Best wishes
Thanks for being brave enough to post this. Yes I looked just like this, still do to some extent. I hated it, the fat old woman in the mirror every morning. To make it worse my hair fell out and grew back wavy so my usual bob became what I called standard old lady hair. Melissa has her gorilla to fight, I have 'Fat Old Woman In Mirror'!
Just to point out James may be from Yorkshire but he chooses to live down here in the south!
Funny you should say brave enough, I wouldn't have shown it at the time as too unwell but it is 3 years ago now and I just came across it and thought I'd like to know how others got on. I too lost my hair, not completely, and it still struggles to come back to as before on the crown area. I hate it - my hair has always been my pride and joy long, thick and auburn, now it's white and frizzy and just about hanging onto my scalp on the crown! Don't care if I sound vain but I miss it so!
I know James lives down south, DL said it to me too. Does it matter I say - although he is in the process of moving further up the country as we speak and still has his house in Yorkshire!
Cheers scats
in reply to Telian
I LOVE your white hair! Truly I do! I have asked my hairdresser if she can colour my hair that trendy new grey/white colour (all the young ones are wearing) but she's afraid it will come up orange or some weird colour as my hair is too dark... so for now I remain salt and pepper. 🤷🏻♀️
borednow in reply to
Did you know you can buy hair mascara? Comes in all colours including white - very easy to apply and washes out. Have a look on Amazon. I put fine streaks into my hair (especially at the front).
Cheers
in reply to borednow
FUN!!!!! I'm going to check it out! Cheers!
Telian in reply to
Thank you Mel, it's taken a while to get used to it, miss my red so much... anyway enough of that, I'm often told how lovely the colour is but never appreciated it really - hubby always says women pay to have what you've got there so now I appreciate it more.
Whatever you do don't try to whiten yours it will look great for 5 minutes and will go as you hairdresser has warned you of....anyway what's the matter with salt and pepper I love that, it was how mine started. This lady came up to me in M&S once very shyly and asked me if my hair colour was natural, I said it was and looking at hers she clearly coloured hers but the roots were showing a gorgeous silvery white. Think it spurred her on to let hers grow out..she looked bewildered so I suggested she had highlights until it grew out - hope she got her wish in the end. 
in reply to Telian
Your husband is right.... many women ARE paying to have what you have! Embrace it! And no, I won't risk colouring mine... I love the salt and pepper, I just wish it were more SALT! : ) I think the faux mohawk accentuates the grey/white, which I like too!
See you're inspiring strangers! You go girl!
Telian in reply to
Forgot to mention, your hairdresser shouldn't be trying to permanently colour your hair anyway whilst on such high dose pred, (mine wouldn't do low lights on me for that reason) plus it mightn't only be your cheeks swollen afterwards - you'd have a head to match too - might have ended up being a real red head no hair just a red head...sorry couldn't resist that...
in reply to Telian
Ahhhhh, good to know! Not that I'd have it coloured anyway unless she could have guaranteed me that grey/white... but she could not! : (
Wow! No one told me -the GP, Rheumy, dermatologist, or hairdresser. Is a lower dose all right? Like 4 mg? Mine is ‘permanent’, but gone in 3 weeks.
I'm no expert, that was my experience only hairdresser wouldn't do it end of! I never asked doctors as I wasn't bothered anyway..3 weeks seems short for a permanent, do you have grey/white hair?
Yes. And less of it than when I started this journey.
That explains the 3 weeks - I only coloured mine when the grey appeared at the sides so was easier to do but it soon turned brassy orange/pink so stopped it. My friend used to colour her hair until she had chemo - once she'd recovered she never coloured it again and the grey looks so classy. It does take getting used to, I only saw this white haired old woman in the mirror and hated this intrusive being! Took some time but now embrace it....
in reply to scats
Ohhhhhhh, Melissa has her "Chubby, Hairy Old Women in the Mirror," to contend with as well.... along with her 🦍 🦍🦍 and her 👹 (She Who Must Not be Named) ....
scats in reply to
Wasn't implying you didn't . You manage to rant at the gorilla, I wish I had that ability, I become really low in the mornings when FOWIM looks back at me. I have had to change so much since PMR, and this is my visual reminder.
At least here we're not alone, we all understand what its like, and that's priceless.
in reply to scats
Oh no Scats, I realise that... no offence taken! We are all in the same boat... we may be sitting in different sections and our particular perspective may be of the opposite horizon... but we're all in the same boat, just trying to survive and get to a safe harbour. xxx
Morning Telian, I`ve had it in the past. Mine had the appearance purple coloured, odd shaped blotches, anywhere. They have disappeared over time, mine were stress related.
Hi. This could really be a photo of me NOW!! I spent 7 months on 40mg and watched my face "blow up" daily. I've now reduced to 14mg but still have the chubby chops - and the fat under the chin and on the neck. I'm vain enough not to like how I look but mainly it's the fact that I don't look like ME!! I still get a shock each time I look in the mirror 🙁 I never thought I'd say this but I'll almost be pleased when the lines/wrinkles come back😉
Hi Janann
Not nice is it, I know it's a way off but you will notice a difference when you get to 10/9/8mgs and start to feel better with your appearance. It was the heavy swollen feeling that came with it - you didn't need to look in the mirror - I hated going out felt like I wanted to explain it all but gradually got over that - life goes on. The only other person I'd seen with the swollen face was a friend many years ago who had a terminal brain tumour, I told myself that I wasn't going to die from this!
Best wishes
Hi Telian.
Oh dear! Not like me at all. After 10 months of PMR I was told by a young doctor “you look like a very young 70 year old, but you have the body of a 75 year old” (I was 72 at the time).😀 I THINK he meant it as a compliment.😏😏
I was one of the very lucky ones with PMR. I only put on 4 kilos (a very small moon face) and within the next six months I LOST 10 kilos. I have stayed slim.
However, I am one of the very UNLUCKY ones with regard to the length of time with this pesky illness. Now 6 years and the CRP and ESR still fluctuate like mad!😡 Still, can’t be lucky all the time can we?
How do you look now?
Constance 💐💐
You are lucky Constance and good on you with the weight, I was lucky it was only my face no increase elsewhere, to say I ate for England!
Unlucky that you are 6 years on though but never say never! I'm in my fourth year and don't give up on getting to zero but at the same time accept it as long as I feel okay, I have GCA too. What dose pred are you on?
Terri
Forgot to say Constance that's me now with the James Martin pic I post last Saturday
Who’s James Martin? Never heard of him! However, as I have lived in Germany for 47 years I’m not surprised. If I came back to England I’d feel like a foreigner!!
Can’t find the photo. Not good with looking up back posts. Can’t even blame brain fog at this stage! However, I can blame age.😀
I am now on 3mg. Tried numerous times to get below, but am truly stuck at that level. Not that I care, even if I am on it for life.
The photo is the one I posted last Saturday called 'How did you spend your Saturday?' James Martin is a famous TV chef over here.
3mg is my limit too, do you feel okay on it? I did just go up a little for flare and trying to come back down - with difficulty I add - don't think I'll get lower than 3mg but am not too worried once I get back there, I did feel near 'normal' on 3.
Can’t remember what ‘near normal’ feels like! I look at me NOW and think ‘wow not so long before 80’, can’t be bad.😎
3mg seems to be a sticking point for a lot of people. I have good days and bad days, but who wouldn’t at my age? If I feel really bad (and I mean REALLY bad) I up my pred for a couple of days but I try not to,
💥🍾🍸
When you up your dose by how many is it and how do you come back down the same dose?
Just that I'm in the 3 club (17 months) had to go up by 2mg a month ago and trying to reduce is proving more than difficult, 1mg was too much so I've slowed by 0.5 weekly and seems to be better, the symptoms were the most painful to date 11/10, don't know why that happened.
That’s a difficult one Terri. If I have a bad day I just take a couple of mgs more, then go back to my normal dose immediately. As we always say “everyone is different”. It works for me (at least it has done over the last few months) it certainly won’t help everyone, but after 6 years I know my pain pretty well (almost friends - NOT).😏
Hope you find your own way of when and how often you have to up the dose.
💐💐
It is difficult Constance but it's nice to compare notes, I like to know how others cope even though as you say we are all different - keeps us busy. Interesting you come back down immediately, haven't tried that, food for thought maybe... I know i'll get there no matter how long it takes, just want to get back to 3, I'm not good on 5.
Morning Terri. Don’t think you should try the immediate drop back, you ‘re not that far yet. I have only been able to do it since I have been stable on 3mg (almost 4 months). That’s not to say I won’t have a flare sometime.
Have a good weekend. Try and find some ME time.
🍀🍾🍸
Have found the ‘Saturday’ photo. What a difference!
Is JM tall or are you short???
Both - he's tall and I'm short...hope I don't shrink anymore or I'll not be on next years snap - he takes priority you see..
Hi Telian
Maybe I'm losing my sense of humour but I'm not sure if I would have appreciated Dasgupta's bird analogy - seems a bit thoughtless to me - the kind of 'joke' which is only 'funny' if it ISN'T you. Anyway I think most of us who have been 'up there' on higher doses have had larger faces - and watched them slowly deflate as we tapered - if not completely - but I am still on 15.5mg so perhaps still 'too high' as yet for final judgement.
Anyway I agree with Melissa we are who we are - and all beautiful in our own ways - as you were/are !!
Rimmy
Hi Rimmy
No you haven't lost your sense of humour, even the nurse in the room gave a look. I did say to him, thanks for that! When I got to reception afterwards she said the usual alright? I said much better now I know I look like a budgy! 'Who said that' she said, I said 'him indoors'! The look on her face...
Going on my experience you will start to feel much better in the face at around half of your current dose - until then the beauty remains in whatever form I say. What has made me smile is that friends never commented at the time saying I looked okay until I'd 'changed back' then they would say 'we did feel sorry for you! They didn't know how to deal with it at the time, I forgive them.
Cheers Rimmy
Morning Telian
My face was so chubby l had to have new glasses as my cheeks kept pushing my others up so l couldn’t focus. My eyes became tiny in the chubbiness of my face, l think l mentioned once before about how much extra foundation l used!
I hated having my photo taken, always standing at the back to try to hide!
Not so much of a chubby face these day, it’s kind of strange how it melts away!
We must not decry ourselves, how’s the psoriasis now?
As large earrings & big necklaces help balance out the chubby face.
Hope you’re feeling OK? I’m off to GP for monthly review! xx
PS you still look lovely in this photo 💕
Telian in reply to
Hi Mrs Nails
You had it also, that must have been so annoying with your glasses pushing up.. I still have a little chubbiness in the cheeks but they don't bother me now. I took that photo on my phone only for my Dermatologist. I was horrified how I looked and have kept it hidden away until I came across it yesterday. I obviously feel better and able to deal with it now. Re jewellery that was a no no because of the skin!
The psoriasis is behaving itself nicely thanks, I do get the odd spot and moisturise like mad, don't want it back as before I was covered head to toe and very very sore, they gave me light treatment as part of recovery.
Hope your GP review goes well, let me know how you get on.
Terri
in reply to Telian
Will do Terri xx
I recognise the cheeks and the look of resignation and also the requirement for a big gentle hug! ❤️
You've go it in one Jane, thankfully I can look back on that, never again pleease!
Encouraging that that's how you looked and the now picture with James Martin. We all have to keep looking for the light at the end of the tunnel don't we! Thanks for posting xx
It's the main reason I did it.. I still have a little way to go, it's the cheeks but at least they are comfortable now, I used to feel like I was looking through a pin hole, was always self conscious because of that feeling but now I don't care... all the best to you and you will get there it's a promise..
PMRproAmbassador
I was on methylprednisolone from November to about July - and in that time went from being merely cuddly to being really Cushingoid. My white smooth hair went frizzy and stopped growing - more like a brillo pad without the pink than anything else. And in total I had gained about 40 lbs from pre-PMR. Some was inactivity gain but the rest was the methylpred. My lovely GP offered me the chance to try Lodotra and over the following 18 months or so I lost 35 lbs, so still a bit up from pre-PMR but far better. My hair is about back to normal.
I have NO photos - for very good reasons!!!!
Thanks PMRpro, I only took the photo for Dermatology, they asked me take it! Think I've been lucky with the weight then - only affected my face, neck and jowls. I was reducing at that time and the swelling was starting to subside, I could see through the plump better, I hated it when I spoke as the cheeks were so solid you could feel them trying to move and they hurt. The psoriasis was just an added bonus. I've always had curly hair but it was thick and helped the curls hang straighter, now it's like ringlets if and the crown area is still thin compared to sides and back - have to be careful with straighteners though as one day it will disappear in a puff on smoke!
PS What's methylprednisolone as opposed to prednisolone?
Prednisolone with an added methyl group - it is meant to make the antiinflammatory effect greater. Unfortunately for me it did nothing for the inflammation - I'd been fine on under 10mg prednisolone before switching (no pred here) but after a time even 20mg taken before bed did not a lot until lunchtime! The side effects were darling: black beard, massive weight gain and weight settling in the usual places, hair like a brillo pad, skin went mad, fluid retention.
Bloody Hell! excuse my french - nothing more to add I'm afraid, wish my hair was back to normal - but it's getting there...
Wow - no offence but sounds like you only needed a bandana and an eye patch to be an extra in pirates of the caribbean! - sorry just my warped sense of humour!
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