Thank you to those who responded to my previous post. I know there was a request to keep you up to date.
Had good, productive chat with dermatologist this morning - which quite frankly has wiped me out. (My resilience for any type of stress appears to have reached zero -anything that causes my heart to go above 60 beats per min creates massive fatique later - am I alone in this?) Sorry off track.
Back to it. So conclusion is that it is a malar rash, caused by photosensitivity - terms bandied about were 'Lupus like", "diffuse hair loss", Lupus spectrum, overlap/UCTD, something about diffuse cutaneous lupus - but not cutaneous lupus. Back to Rhuem for more on diagnosis - I gather Dermatology will inform them of their opinion, e.g. rule out anything not related to AI disease.
Reflecting upon todays consult, I thought again about the value of this forum. Undoubtedly, (as some of you will have gathered) I had done my reading homework, without which I would have been more at sea than I feel now. I wouldn't have had a clue about what anything meant. The support we can give each other in unravelling complex pictures is increasingly apparent to me. I know we can't give medical advice as such, but in sharing eachother stories we can find similarities and have those subtle but invaluable 'eureka' moments that can give us such peace of mind and add colour to the inevitable complexities of our diseases.
Sorry for the long, meandering post - it's a mirror to the state of my very tired mind. xx
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RosieA
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Thank you. Any news of getting your screening done for your biologic? Sorry can't help with the burning feet issue. Odd, I must say. Here's hoping someone can give you some idea. x
lol the feet thing is weird but it will be ok. If it’s fixing what’s going on inside I’ll happily go with it. I had the the chest X-ray yesterday ... just waiting for the blood test now and I have a phone app on Friday with my rheumy again. Progress continues. 😁 thank you for asking.
I hope you are relaxing now and recovering from your very full on day?
Yes, thank you. Had a good sleep and now looking forward to the hairdresser coming. Yipee!! Also have family coming down from the North - we are having a garden picnic and I must say we seem to have hit the best day for it. Just have to reconcile myself to slavering on the Factor 50, ugly hat (much abused in the garden) and sitting under an umbrella to avoid any sun rays. Seemingly, even on a cloudy day 70% of UVR seep through. I have to double my HDY in the summer and reduce back to 200mg in the winter. Don't know why they can't do 100mg increments as my ideal dose would be 300mg based on weight!!
My! Your team are steaming ahead. So pleased that it is all coming together for you. Great news and all is crossed that the treatment will be transformational. x
Aren’t they just. Transformation just around the corner... yes please 🥳.
What a great day to be able to see your family and getting your hair done too 🥰👍🏻 Fantastic. I hope that you have the best time. 🥳
Don’t you go worrying about that much abused hat of yours 💖 It and sun cream are there so you can have then bestest time outside and not be stuck indoors 😁 I wish factor 50 had been around when I was a child. I had to swim in a shirt 😳😩lol lol and lol ... boy did I burn otherwise... Now factor 50, cool clothes (cold cool... not trendy... too late for me to be that 😊😂), a much loved wide brim straw hat... oh and sunglasses ... and away I go safely outside into the shade of the sun.
I am really pleased that your chat with the dermatologist was thorough and informative. Another piece of the puzzle so to speak.
I completely agree with the support and value of this lovely forum. It has given me a lot more confidence to be proactive about my own health care and reassures me that the complexity of auto immune conditions is part and parcel of our daily journey.
I do hope that things continue to move in the right direction for you. x
Thank you Gail. Yep another puzzle piece as you say - not quite sure which one though!! At least I don't feel a fraud over the face rash - I suspected it was a malar rash but still a little upset to have it confirmed if I'm honest. I had hoped it was the HYD causing photosensitivty but this wasn't even discussed - indeed I have to increase it. Got another rheumy appointment in a month so hopefully with new ANA test and Derm involvement I will better understand what is happening.
Hope your feeling a little better with the MTX - although four weeks is still very early days my fingers are crossed for you.
Yes, having confidence is all important and so, I feel, is arming yourself with knowledge. It's such a complex area of medicine that otherwise much would go over my head. xx
Hi Rosie, bless you, definitely not a fraud. I can completely understand why you are feeling a little upset with the confirmation that it is a Malar rash. We all hold onto a bit of hope that it is something else and can be sorted easily.
I’m doing okay generally and even though it is still very early days with my MTX I can see some improvements which is great.
Enjoy having your hair done and your garden picnic with family too. A lovely way to spend the day.
I have some annual leave now until next week but will be heading for my yearly eye check up in a few minutes. Suspect they may tell me I still have sight loss.🤣
Hi Gail, you were quickly in my mind this morning and I do so hope your eye test went well and that you got some good new! Let me know if you feel able. x
Family picnic etc was lovely but am now thoroughly exhausted and have promised myself a very lazy day indeed. Fingers are tightly crossed for you. xx
Morning Rosie, I am so pleased that you had a lovely family picnic. A rest day is a must for you.
No improvement in my sight but I know that there won’t ever be. I am registered as severely sight impaired. Got some good advice though regarding my dry eyes. My left tear duct is completely blocked and there is a significant breakdown in my tears generally. Have a lovely eye mask to use twice a day and issued hycosan extra drops to use and hylo night for bedtime. Dry eyes have become more severe due to age, only 45! 😂, hormone changes and the Lupus and RA. Pressures good though so no glaucoma, we have this in our family and no further changes to my retina or optic nerves so all in good. Couldn’t see how many fingers she was holding up or read any of the chart but could see her outline and light. That’s me for another year now. x
Sounds like a mixed bag of good and not so good. I used the hydrosan - very good. Is there anything they can do for the tear duct? Hate it when they mention age, 45, still young in most people's book. Good news about the glaucoma though as well as the retina etc. I need to have mine checked soon now that I'm on the HYD. Will start my doubling up dose today- yipee!
I'm just pondering why I feel as though I have done a round with a boxer. Why do my muscles ache? Hum, another of life's endless mysteries - I think I'll wander over to the sofa and conjitate over that one. Also, struggling with word choice today, so apologies if this doesn't make entirely sensible reading.
Aww bless you Rosie. I hope the double dose of HYD is okay for you. It is such a mystery with these auto immune conditions isn’t it? I had a rash appear out of nowhere yesterday on my leg but has gone today. Today my knees and ankles are making themselves known but manageable so will just pace myself.
As for my tear ducts, massaging my lower lids and using the mask should help but there are other options if not.
I honestly don’t know where today has gone. I can sit down and suddenly hours have passed. I haven’t fallen asleep but just almost zoned out so to speak. Such an odd feeling. Think it is my body’s way of making me rest.
I do hope your muscles settle down for you soon. xx
I so know about the zoning out!! Gail, can I ask if you ever get mouth ulcers. I've just got my first and wondering if it just because I am just so tired. Hope you don't mind me asking. Think I might need to take a photo for next consultant appointment as I've always said No to this symptom. Hope you don't mind me asking. xx
Of course I don’t mind you asking Rosie bless you. Yes before the MTX I was getting mouth ulcers fairly regularly and had mentioned this to my rheumatologist in July. Tough wood not had one now for a few weeks. Definitely worth mentioning to your consultant as you say. xx
Thank you Gail, just spent 5 mins trying to capture ulcer with a photo - so unseemly. I am glad though that yours are dimishing with the MTX - result! You so deserve a break.
I can see another day of rest ahead of me tomorrow - today has gone on a 'busy doing nothing... trying to find lots of thing NOT to do' as Tigger would say in Winnie the Pooh, my new hero I think. xx
Trying to get a photo will be a real challenge. MTX and I are becoming very good friends and I hope to keep it this way for a long time to come!
As you know I have a real love for Winnie the Pooh and used to see myself as Tigger but have been very like Eyore for many months. Love them all! I have a quiet day planned at home to balance my busy day today. Billy cat will be happy as he does miss me when I am not home. I have been helping out at weigh in at slimming world for the last four hours as it is just five minutes from my house. I attend group on Saturday so will be my turn to face to the scales but so nice to meet other members too. Billy cat jumped into my arms when I got home and is now snuggled up on my knee. Think he is pleased to have me home. It is the small things that I hold so dear to me and make me so happy.
You take good care and do let us know how you get on won’t you? xx
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