I want to thank everybody who supported and reassured me on my post two days ago. Thank you all for sharing your own experiences with me and to Barbara and Kat for sharing photos of their rashes which did suggest it was indeed a Lupus rash I had, as I’d suspected, when it looked so similar and was running exactly the same course as it had done previously.
Update - Well, my GP phoned yesterday to say the Dermatologist had contacted him to confirm it is a classical Lupus rash which will leave my Rheumatologist with egg on his face! So I’ve had to begin another 6 weeks of Prednisolone starting with a week of 30mg and dropping by 5 mg per week until the 6 week course is finished. I’ve also to use more Dermavate on the rash and Dermacool to reduce the itch. So here’s hoping this regime will see it off. 🙏🏻 If only my Rheumy had accepted it was Lupus when he first saw the rash on 3rd Feb it would have saved it going this far.
However I’m very pleased and relieved to report that the itch is reducing to a more tolerable level and the redness of the rash is slowly fading here and there although a few new patches have tried to appear. So I think 🤞 it is at last slowly subsiding.🙏🏻
To keep myself busy and distracted while my liver function is returning to normal and whilst enduring this rash I’ve been experimenting with some Fair Isle knitting. I used graph paper to design a sheep pattern (as you all know how I love sheep 🤣) but it needs a bit of tweaking to lie flatter/smoother. Knitting and crochet, indeed any crafts are SO therapeutic I find. If anybody has any suggestions of what to use the squares of Fair Isle for please let me know. I made the long strip of Fair Isle into a wee bag ideal for carrying my GTN spray and Verapamil when out walking. I’ll add a picture of it below.
Thanks again to all you lovely Lupies for your support, compassion and concern when I know you are all dealing with your own problems. I really appreciate it.
Love and hugs,
Spotty xxx
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oh Spotty I am so so relieved to read this😘 . I’m so sorry I didn’t respond but I had been thinking about you lots . Your back looked so incredibly painful . Blooming rheumy 🤦♀️😡.
Sometimes only pred will do 💪 . I know you’re so knowledgeable but just wanted to say once it calms down if you find it gets dry and itchy I find epederm ointment not cream works a treat . Very bland but safe.
Sending you gentle squeeze and make sure you treat yourself to whatever you fancy .. boy you deserve it 😘🌹xxx
Aww, thank you so much for your concern and compassion Tiggy. Thanks too for the tip about Epederm. I’ll get some. I’m using all ‘Simple’ toiletries as well as Aqueouscream at present too, until my skin returns to normal.
Hubby is taking me out this afternoon so I’ll tell him you’ve said I’ve to have any treat I fancy.😉 Looking forward it. 🤣 Thanks again Tiggy and I hope you are doing ok just now.🙏🏻 Gentle hugs back to you. 🤗😘🫶xx
They are all the same I think.😂 Well there were no diamonds, chocs or flowers I’m afraid but I did enjoy buying new underwear and nightwear just in case I find myself back in hospital. 🤣 I’ve left them in a particular drawer where hubby can easily find them because you wouldn’t believe what weird and wonderful things he packed for me when I was rushed in last month! No toothbrush or toiletries, a book but no reading glasses, and a nightie I definitely wouldn’t have chosen to wear in hospital myself. 😂 Never mind he did try his best. 👍🏻 xxxx
Ah you've got one of those too! Sent my hoosband out for three quarters of a pound of cheese and he came back with 3lbs 4 oz of cheese; with the comment "that cheese was heavy; do we really eat that much cheese!" So many examples of stuff like that over our 40 years together. Gotta love em! So glad you're on the slow mend. Isn't lupus the gift that keeps on giving? I have 4 lovely hard, dry skin raised patches on my lower left leg this morning which who knows where they came from? I've resigned myself to turning into a rhino. My Dad always wanted me to develop a thick skin....hope you continue to stop itching and that "smug" takes it's place. Maybe you're rheumy would like a knitted bag to keep their ego in! Better get knitting - they might need a BIG one 😊Good Saturday Lupus Peeps xx
Haha, you did make me laugh. Thank you. Yes our men can be so funny (if not frustrating) at times, and they have no idea why. 🤣
Sorry to hear about the rough patches your Lupus has given you. I always say Lupus is the condition for anybody who loves surprises because you’ll get so many along the way!😂
I love the idea of a big knitted bag for my Rheumy - especially as he’s a man! 😂 But with the price of wool I don’t think he’s worth it. 🤭 I think it will be an embarrassing visit the next time we meet.
Thanks for brightening my day CC. Enjoy your weekend. 🤗😘xx
Great news things are starting to improve...I hope it continues that way.With regards to your knitting the fairlsle squares look fab and could be used as centre panels in a cushion maybe.the sheep one is brill but It looks like it pulling inwards and i suspect that will be because your carry over yarn is too tight and preventing it from lying flat.
Thank you so much SML. Yes, I wondered if that was the reason for the sheep square pulling too. I’ll maybe give it another go sometime and see if I can make it look any better. 🤞
Hugs back to you and your gorgeous spaniels. 🤗 xxx
I’m so pleased to hear your news! I’m shaking my head and rolling my eyeballs here at your rheumatologist 🤦♀️ I’ve just sent you a message.
Love your knitting 🧶 really clever, that must take a lot of concentrating, it’s a lovely distraction isn’t it? I did undo the cardi border and just about to do the buttonholes… again! 🤞
It is amazing Diane isn’t it when my Rheumy is considered an expert in the field of Lupus and has written books about Lupus in children.🤷🏼♀️ No wonder I’ve heard no more from the Rheumy team since they told me they were also referring me to the dermatologist. 🤣 They must be so embarrassed.
I don’t find the Fair Isle knitting too demanding in concentration although I have been known to miss something crucial in a drama we are watching whilst knitting it. 😂 But it is worth it when it distracts us from our discomfort and worries. Sorry you had to undo the cardi border, but worth it in the long run to get it right isn’t it. Looking forward to seeing it when you finish. I’m away to look at your message now. Heaps of hugs. 🤗🤗😘🌷xxxx
I'm so happy to hear this Spotty 🤗This is why this community is so helpful..if in doubt consult the experts (that's us 😉). Doctors don't know everything as we all know. Whenever I have a query I think I'll ask my Lupie mates!! 😹It helps us to navigate our own rocky roads on our own individual lupus journeys. Sharing ideas helps us to formulate a plan n move forward and make informed choices. I'm so glad you're seeing improvements and your dermy has got u on the right treatment now. I think that you'll shed a lot of skin so be prepared..maybe an extra bottom sheet on the bed? I remember shedding like a snake when the Pred worked it's magic!! Keep moisturising and healing hen..you've got this!! 💪
I love your Fair isle knitting 💜And if you really wanna thank me personally I'll have that wee bag in you're second pic 😉Clever girl!! 💜🌈💕Xx
Totally agree with you Kat, this community is so very helpful and speak from experience which is worth so much more than book learning. As well as that whatever time of the day or night you write with a concern you will get a reply very quickly even if from somebody on the other side of the world. It is amazing. I always remember being terrified by the mistake i”d made taking 8 Prednisolone in one day instead of 4 (when my friend and I walked round Derwentwater which you’ll recall) and I posted my concern that night and had a reassuring reply within minutes from one who knows! Where else would you get that?
Thanks for the reminder of the shedding skin Kat. I’ll be ready for it with my wee hand-held vacuum.🤣 Until it is ready to start shedding I’m moisturising the fading areas with Aloe Vera or E45 and washing it with Aqueouscream. So far so good.
So pleased you like my Fair Isle knitting. Let me know your favourite colours and I’ll try knitting a wee bag up just for you. 😉 Take care Kat. 🤗😘💕🌷🫶 xxxx
Oh what a relief. I truly wonder what sort of training some of these Rheumatologists have. It is nothing short of abysmal treatment. I am so delighted that you are now getting help for that rash. Your crafit work is so exquisite. I adore the sheep. Xxx
It is staggering isn’t it Cecily? My Rheumy, Dr A, has been at our hospital since the beginning of the pandemic. He is originally from Nigeria so whether he was trained there, I’m not sure. But he seemed very good during Lockdown and would have regular consultations by phone. I Googled him and found he’s written books about Lupus in children so it is absolutely amazing he didn’t recognise my rash either on the 3rd Feb when I’d had it for a couple of days or in the photo I posted 2 days ago which was sent to him. Luckily although my GP wasn’t certain he started me immediately on Prednisolone and Dermavate and forwarded the photo to dermatology as did the Rheumy sister who told me Dr A still believed the rash was NOT Lupus-related. So another 6 weeks of Pred and Derm now but hopefully that will send the Lupus packing for a good while.🙏🏻
Thank you so much for your kind words re my craft work. Are you still doing your pottery throwing? You made some super items. Take care Cecily. 🤗xxxx
The Rheumy that diagnosed me with Fibro and hysteria is allegedly a Lupus specialist, runs groups etc so self proclamation of “ expertise” is no recommendation in my view. I do hope yourRheumy will apologise for his error. Yes I am still going to pottery every week. I am still useless. I cannot try the wheel because it is too low down for me so I sit in my wheelchair and model clay. So many times I have spent hours building then it ends up in what we affectionately call the f*** it bucket lol. I made a wonky rose vase, a wonky rose pot and a wonky Christmas tree that started out looking like a 💩 emoji, morphed into Mr Blobby’s love child and ended up still wonky but I actually love it. My latest effort is a driftwood vase 🤣. It was not meant to be that but it was so bad it sort of had to be that way. I am even doing a Little bowl with driftwood curved edges 🤣. If it doesn’t all fall off in the kiln I will post it for you xxx
Haha, I don’t see my Rheumy apologising. That would be admitting his error and liability. But it has definitely shaken my faith in him.
I love the sound of your pottery creations! 🥰 You could have your very own range called “Wonky Pottery” which I’m sure the way many of us feel we could relate to very easily. I can’t recall the last time I didn’t feel wonky 🤪, so a piece of sympathetic wonky pottery sitting in my kitchen would be reassuring to know I’m not alone.😂 Have you thought of writing a book about your pottery experiences? I think it would cheer us all up, and I think we should all have a f***it bucket!👏🏻 Great idea. 👍🏻 Looking forward to seeing your bowl when it is finished. Thanks for the enjoyable chat Cecily. Enjoy your weekend. 🤗😘xxx
Mmmm not sure everyone appreciates my style of heavy, wonky pottery. I am sure the potter is despairing. One of my fellow potters said a few weeks ago oh it’s a bowl I can see it now that’s good for you. As soon as she said it she said OMG I am so sorry I said that out loud, I laughed until the tears ran down my face..now that is why I go to pottery, laughter, politics, sympathy and the pure joy of human interaction . Have a lovely weekend xxx
As I recall Lowry’s mother despaired of him too, and look how his work became so popular.😉 So don’t belittle your work. If it creates laughter for you and others, all the better.👏🏻👏🏻 All sounds brill to me and I’d for one enjoy reading about your adventures in pottery and your interactions with the others. 😁 xxxx
hi spotty I haven’t seen your post from couple of days ago but hope your rash gets better soon. I love your knitting , especially the little sheep- I’m making a tank top for myself at the moment so much bigger project than the doggie jumpers - lots of love 💗
Hi SV, yes I’m feeling a difference in the rash already so I hope and pray the worst is over now and the higher dose of Prednisolone and continued use of Dermavate is doing the trick.🙏🏻
So pleased you like my knitting and good to hear you are keeping at it yourself. 👍🏻 You did a fabulous job of the doggie jumpers so I’m sure your tank top will look lovely too. 😍 You must show us when you finish. With love and hugs and cuddles for Bea and Mira 💕🤗😘🤗🤗xx
I am so pleased for you, at last a good result. I use dermol emollient for washing and use the moisturiser, it was recommended by doctor and get it on prescription. I stopped using soap as my skin is so sensitive.
Thank you Lizard. Not out of the woods yet but definitely an improvement. Hopefully I’ll begin to feel more ‘normal’ every day with the high dose steroids tapering down over the next 6 weeks. Thanks for the recommendation of Dermol emollient and moisturiser. I’ll ask my GP about them and see if I can get them on prescription.🤞 I’ve been using Aqueouscream, Aloe Vera, E45 and the Simple brand products to date. Can you recommend a washing detergent for sensitive skin? Thanks again and have a lovely weekend. 🤗😘xx
Hi Spotty-ewe, I love your squares especially the sheep one. Could you sew them together to make a scarf, or feature them on a dog coat? I had a really bad lupus photosensitive rash in the summer and my BT engineer recommended Dead Sea salt baths which really helped me reduce the rash. You can get them infused with lavender for a relaxing soak! Not expensive and available in most chemists and online.
Hi Lily, I like your suggestions for my knitted squares. I’ll have a think about that, thank you. Thanks too for the recommendation of Dead Sea bath salts. I have Epsom Salts infused with Eucalyptus and another with lavender, but I’ll look out for the Dead Sea salts next time I’m in Boots. Thank you. I hope you have a lovely weekend. 🤗😘xx
Hi you are welcome and thank you for replying to my post…it is always lovely to get a reply. With my very best regards and wishing you speedy recovery from your rash Lily
Thanks so much for your kind words SC 🥰 and thanks too for all the info and support you offered. 👍🏻 Let me know who it goes with the steroid card. Enjoy the rest of your weekend. 🤗xx
Hello, Spotty. Sorry I’m so late in replying. Hubby had a knee replacement a couple of weeks ago so life has been hectic. I’m so glad you got a diagnosis so quickly from Dermatology - it was so obviously lupus it defies belief that your rheumie said it wasn’t! Hope the pred works quickly and you taper it asap. It took me three years to get off it.
Your wee squares are lovely. A patchwork blanket for these chilly nights sounds good. Or dog coats. And I love the sheepie one. A friend’s DIL has just had a baby so I’m knitting baby things just now.
Re the washing detergent I use Fairy non-bio, either powder or pods.
Hello Barbara. Many thanks for your kind wishes and for the info re washing detergent. 👍🏻 That was a very long time you were on the Pred! I’ve been very lucky with previous flares that a month or two has been sufficient. But being so run down after all the other shenanigans, it might take longer this time.
Thanks too for the suggestions re my knitted squares. There’s been a few excellent suggestions so I’m still thinking about it and trying to decide while I knit a toy clown for our village Flower show Crafts section ‘a knitted toy’. Never made one before so hope it turns out ok. What are you knitting for the baby? I just had word yesterday that one of my former pupils (now 38) and his partner who live in Norway are expecting a bay in September. So I must get thinking about that too. Any suggestions?
I hope your hubby’s knee heals quickly and that he enjoys the benefits of his new knee very soon.🙏🏻 Take care Barbara and thanks again for your help and support. 🤗😘xx
Hi Lulamay, I am very touched that you think them worthy of selling. 🥰 But I don’t think I could be bothered with the hassle of it but could maybe try a craft stall at our village craft fair I suppose.🤔 Mind you I’d have to sell a lot to cover the £10 table charge. Your idea does sound better. I’ll have a think about that. Thanks again. Enjoy your Sunday. 🤗xx
..what a dreadful time you have been having Spotty. I have read your ‘rash’ posts & just wanted to say that I am so very pleased that your rash has been confirmed by your Dermatologist & can be treated accordingly.. ..
..do you have any wet wipes to wipe that egg of your Rheumatologists face!!!!
Keep improving, keep that positivity-going, take care will be thinking of you..💕
Hi Daisy, lovely to hear from you. I wondered why you were asking about wet wipes and when I read on it did make me laugh. Yes, I’ll have to remember to take a pack with me when I see him next. 🤣
Thank you so much for your lovely wishes and for thinking of me. I’m so pleased you like the sheep square. It was an experiment so needs a bit of practice to get it right. That should keep me out of mischief.😆
I hope you are keeping ok yourself just now? Take care Daisy. 🤗xxx
I’ve never tried gloves as I’ve assumed they’ll be quite challenging. So good for you having a go and even better you were able to wear them even if they weren’t perfect. 👏🏻
I’m so sorry to hear you are still undiagnosed despite all your symptoms. 😫 It is so frustrating that appts take so long to be given to us often resulting in us feeling much better or the symptoms subsiding before the day of the appt.🙄 My symptoms started intermittently from the age of 13/14 (losing hair, mouth ulcers, fever, nausea etc) when it was put down to ’nerves’ and I was 57 following that first horrendous rash and many blood and other tests, before I was finally diagnosed with SLE. It is SUCH a long and dreadful journey most of us here have to go on to get the diagnosis and help we need. And even with a diagnosis we still don’t always get the help we need when we need it - my latest rash being a good example. Still we all have each other here to support, sympathise and truly understand what we are going through, and to make us laugh. It makes such a difference doesn’t it to have people who have experienced it all themselves. I’ll keep my 🤞 that you get your diagnosis before much longer.
In the meantime keep smiling, keep making others laugh and keep up the knitting. You should post some of your knitted creations for us to see. Take care Daisy. 💕🤗😘 xxx
Always love your projects. So very glad you got the answers. I have less and less faith in rheumatologist as far as there understanding and knowledge of lupus.
Aww, thank you Pumpkin. I’m sorry to hear your Rheumy hasn’t instilled any more confidence than mine has with me. I left a message on their helpline on Sunday evening looking for advice re my steroids and they haven’t got back to me yet.🤷🏼♀️ Great eh? I think you are right re their understanding and knowledge of Lupus being very limited which is why it is great Lupus UK place dedicated Lupus nurses in hospitals where it is possible. Sadly not our hospitals. ☹️ Take care Pumpkin. 🤗😘xx
As a knitter myself, I’m really admiring your splendid Fair Isle! Although I knit all sorts of things & can follow quite intricate patterns, (even create my own), I’ve never attempted Fair Isle. I learned to knit as a little girl & have knit ever since, problem is the ailments dictate how long I can actually sit doing it…..
Maybe put some wadding in between two squares, sew it all together & you’ve got a ‘hot pan/hob kettle handle/microwave dish ‘grabber/protector.’ A sort of square oven glove type thing, or use as a pan rest (if the wool will withstand heat).
When my Mum was ill with cancer (she died 2002, aged 58), the hospice gave her a little oblong bag to carry her syringe driver in. It had been donated by volunteers who made them specially. Your squares sewn side by side, (ie two on one side & two the other), would make a deep enough oblong & if they were lined would be big enough & strong enough, with a carrying strap long enough to wear diagonally would make a stylish & eye catching & useful aid. It wouldn’t need to have a zip or flap fasten as it’d make access to the driver easier if it were open.
I agree with Lizard28 about Dermol lotion. I have Dermol 500 on prescription, it’s an anti microbial emollient & moisturiser which can also be used as a soap substitute. I wash with it, even my hair as I have very dry skin + itchy scalp…..be careful not to slip underfoot though. As a moisturiser I find it really good & it comes in a pump dispenser which I unscrew to get the final dregs out….too good to waste!
Sorry for the delay in replying Turquoise, life is rather hectic at present with a few things going wrong as well as the ongoing health issues.🙄
I was surprised at how easy Fair Isle is so give it a go if you get the chance. It is so attractive I am looking for more things to knit. My Mum taught me to knit at 6 years old but she couldn’t read patterns so was very inventive in making the jumpers, cardigans etc she knitted for all of us.
I love your suggestions for using the squares and might give them a go. I’m not sure the Fair Isle will take a lot of washing so cleaner uses are best I think. An oblong bag for a syringe driver sounds a lovely idea. I’m sorry to hear your poor Mum went through all that and at such a young age too. Who should I approach to donate such a thing?
I spoke to my GP yesterday about my slowly fading rash and needing to moisturise my flaky skin. I sadly couldn’t recall the name of Dermol lotion (brain fog is awful these days) so he prescribed QV cream which I think is similar to Aqueouscream, and like your Dermol it is in a pump dispenser. Once it is used up I’ll ask specifically for the Dermol.
Thanks again for all your help and suggestions Turquoise. Much appreciated. Take care. 🤗😘 Xxxx
No worries about delayed reply Dear Spotty-ewe, I hope life soon settles itself down a bit for you x
I guess you could contact any hospice you choose, child or adult ones. Unless you’re familiar with one close to where you live, there’s always the option to post things to them depending on if they need anything. Maybe some hospitals too as not only cancer patients use syringe drivers. In the past I’ve knitted hats & clothing for my local Premature Baby Unit, has to be machine washable wool though.
Another idea for your knitting is ‘Fiddle Blankets/squares.’
Dementia suffers like to constantly fiddle’ with such things - you can find info on Dementia UK &/or Dementia Talking Point.
All manner of things, eg buttons, tassels, textured material etc, can be securely sewn on for them to fiddle with but it has to be safe & washable as they tend to put things in their mouths. My Dad had Lewy Body Dementia & sadly died 2 years ago; I looked after him until he was admitted into hospital during wretched Covid & they wouldn’t let me see him at all for 3 weeks - he just gave up & died in a superb care home which put the hospital’s care & appalling treatment to shame. (Sorry for waffling).
Thanks so much for your kind words regarding my Mum - I’ve never recovered from her death, I had a nervous breakdown & was admitted into Psychiatric Hospital. Not only was she my marvellous Mum but we spent a lot of time together - socially & working in her various businesses.
Life throws so much rubbish at many of us as you well know 🤗
Dermol Lotion can be bought over the counter from a pharmacy & probably could be ordered online; I have it on prescription as I have a Pre-payment Certificate - here in England some of us have to pay for prescriptions. My husband was most surprised when he qualified for them free on his 60th Birthday!
Anyway I sincerely hope the cream you have does the trick & thanks for telling me about Fair Isle.
Some great suggestions and info thanks Turquoise. I can relate to much of what you wrote, so intended to write a PM to you. However an old friend in America phoned and chatted for almost an hour! So I’m shattered now. But I’ll definitely write tomorrow.
I wrote to you yesterday, or at least I thought I had and only discovered today I’d PM Turquoise and not Turquoise-1!! 🤦♀️ I’ve copied and pasted it to you this time. How embarrassing! 🫢 xx
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Just a rash or malar rash
subacute cutaneous lupus
My lupus rash update
