Back is driving me crazy.v

[Boudica1]

I've really had enough of this and now it seems like I'm starting to get spots starting to creep up on the thighs that looks suspiciously like the way it started years ago on my back.

Running out of distractions to take my mind off the itching so I'm driving poor hubby up the wall as well. 😵😵😵😵😵.

[stiff19]

Dear Boudicca so sorry to see your pic it looks very sore. What has happened with your biopsy , have you heard ? Sorry I’m in no position to offer advice but I do send all my best wishes and hope you find relief soon 🙏🤗x

[Boudica1 in reply to stiff19]

Hi stiff19, consultant at the time of the biopsy said that the result should be 4 weeks. No idea how quickly they tell me or how so in around one and a half weeks time they should have a good idea this time just what is going on 🤔🤔🤔🤔🙏🤞.♥️

[stiff19 in reply to Boudica1]

I do hope so 🙏 thoughts are with you 🤗x

[Littleandperfect]

Morning Boudica1 .. I do sympathise with you .. if you look at my profile you will see my back and shoulders have these horrible rashes too .. 😧the ONLY meds that work for me seem to be steroids unfortunately.. and the overuse of strong steroids has now given me Cushing’s syndrome 🤥... I’m now off all meds except hydroxy and just waiting for the next flare ?? 5 weeks only of steroids so far .... sorry I can’t be more positive for you... Amitriptaline helped me with the wretched itching .. good luck 🤞

[Krazykat26]

Yes Boudicca 🤗I can relate...n u have my sympathy..as soon as I saw your photo I winced n remember the time that my back was exactly like yours!! 😖Interesting that u say you've got spots coming up on your thighs coz that's what happened with me too!! I'm not familiar with your medication regime so I'll just plod on n u can take what's relevant n ignore the rest!!

I was diagnosed with subacute cutaneous lupus (SCLE)in 2017.

It has taken 2yrs for me to get the right combination of meds n my rashes have been kept under some control for the past year or so. I'm on hydroxy, prednisolone (reducing slowly), and methotrexate which has made a real difference..I still have patches on my back but they're now manageable!!

I understand u want relief now so a few things that I've tried n got some relief with are...antihistamine..I take Piriton to relieve the itching n I have used sodium bicarbonate on the sores but that was before dermy involvement. Mix with a bit of water..make a paste n apply to the affected area.

I am prescribed Dermol 500 lotion which is great to apply n u can use it often..it's used for eczema n dermititis n it does cool the area n relieve the itch. I have different strengths steroid ointments too..ointments coz they stay on the skin for longer than cream. Betnovate n Dermovate(which is stronger)

Clothing..I can only tolerate loose fitting cotton clothing when my back is like this..no bra (I'm lucky in that respect 😉)

I highly recommend that u have a look at DermnetNZ website..there's loads of skin disease on there n u can have a look n match the rash so to speak!! It's very informative about treatments too so I think you'll find it helpful!!

You've got a good pic there to show your dermy..it's important that u write your symptom diary..including things like what the weather's like right now!! R u photosensitive? I am n I have to cover up all year round..wear sunscreen, hat, shades, long sleeves, trousers etc!!

It's soooo hard not to scratch I know but it is important that u try not to!! Impossible I know but one technique I've found that's working for me is to just pat the area gently!!

I can hear u now..but it's my back!! Impossible to reach I know but I used to do the bits I can reach n hubby helps with the rest..n he helps to apply the steroid ointments coz it should only be applied to the sore..not the healthy skin so impossible for me to apply myself!!

The itch is so annoying n all encompassing..the irritation happens in the skin n our mood quickly follows n we become very irritable in ourselves..I do anyway!! It's important that u try to remain as calm n relaxed as u possibly can..I find that taking deep breaths in through the nose n then out through the mouth (gentle blow) helps me to focus on relaxing..it sounds weird but it does help to break the itch, scratch, itch cycle!! Scratching actually makes it more itchy!! 🙆🤦

That's it!! Hope u find something in there useful n if I think if anything else I'll let u know. 🤗🌈😽😽Xx

[Boudica1 in reply to Krazykat26]

Thanks for your reply. Yes it's very hard not to scratch and some times impossible and then it's a sudden extreme soreness and a burning sensation that really hurts so I avoid doing that and end up in some crazy dance. Most of the time I try to distract myself like yesterday I made myself some trousers but thats when the eye's are behaving. The start of cataract's and astigmatism Oh well at least thats one thing I can put in the Age pigeonhole. Hahaha.The only meds I'm on at the moment are for the late onset asthma and other Lung conditions and the QV cream had to stop the Hydroxychloroquine some months ago so it didn't muck up the biopsy results so I've been in a almost constant flare with everything since it's worn off. I'm really hoping that they get back to me as soon as they have the results because I finding it vary hard at times. I found with the Hydroxychloroqnine at 2x200 a day was helping to keep everything under control sort of but then they reduced it to 1x200 a day and the rash came back but most of the other stuff was calm most of the time but I had to have Prednisolone a few times and bingo! rashes went and I actually felt more like my old self before all this started but the GPs only gave me 5 day prescriptions each time. I did tell the Dermy about how the steroid's helped but he didn't say anything about it instead he went on again about a combined clinic and seemed annoyed that I'm still not being seen in one, we can but dream but I still wont hold my breath.

😉 you know what I mean?

[Krazykat26 in reply to Boudica1]

That's interesting too..at the start of treatment I was prescribed hydroxy.. 2x200mgs twice a day n when I reduced to 1x200mgs a day the same thing happened!! I'm currently on 300mgs per day which is a bit complicated..but I take 400mgs on one day n 200mgs the next. Am very familiar with the crazy 💃😹👍

Definitely record your symptoms n I hope that your biopsy results come back soon as!! 🤗🌈😽😽Xx

[Boudica1 in reply to Krazykat26]

🤣😂😂🤣😂💞❤️💃🕺💃💃🕺🌋🌋🌋💃💃💃💃.Oops I forgot to mention that yes I am photosensitive so do keep well covered up and the only bits of me that anyone can see are the face and hands. Definitely not the body, arms and legs, the only time they see daylight is in the shower 🚿 or getting dressed or in PJs🙊🙉🙈. No idea what's causing the problems on the back as it's 💯 not sun exposure maybe I'm reacting to the 🌙 moonlight 😂😵🙃.

Hope your rashes are behaving.

❤️

[Barbara17 in reply to Boudica1]

Hello, I also have SCLE and I agree with everything KrazyKat says so I won’t repeat it all! I’m on the same mixture of medication as she is except I inject methotrexate as I couldn’t take the tablets. Only thing I would add is that I’ve found Dermacool lotion very effective to help with the itching - especially at 3 am when it’s driving you MAD! Like KK I’m in a good place at the moment and it really is a balancing act to find the right combination that suits you. Really hope you get some help soon. Sending ❤️.

[sasa]

I have SLE for over 20 yrs (also other diseases) and diagnosed with PSC 5 years ago. Itching was the worst nightmare every day and night. With PSC given colestyramine and rifampicin and itching now gone. Worth a chat to Dr.