I just went online & discovered this site. I have been inspired by your stories & helpful comments. It is often hard to keep positive with this disease although I am a fun loving, people person & have taught primary age students for over 30years now. I've been diagnosed with Lupus, Raynauds Syndrome since 2008 & Fybromyalgia since early 1990's. I believe I have actually had Lupus since my 1st child in 1982. Recently my increased photosensitivity has been scary, itchy & painful with over 20 sores/lesions on my arms & hands from scratching. Any suggestions to help me deal with this. Any one else dealing with this & how do you cope? Does this mean my disease is progressing? -(not my usual flare up symptoms). Shaky hands & numb toes too? Any suggestions? I take plaquenil & other concoctions of drugs. Can only see my rheumatologist on Feb 4th 2014.
I live in Australia. Anyone experiencing increase... - LUPUS UK
I'm in UK, my doc gave me cetraban cream to ease this and other steroid cream, dermovate and hydrocortisone creams. you do ned a really good medicated re hydration cream and good sun care
Welcome to the site! Its a fab place for reassurance and comfort. My photo sensitivity seems to have increased this past few months i often get very itchy all over - although I'm anaemic and apparently this is a symptom of that! I have patches of red scaly skin on my belly, legs and hands. Its sore and weeps too - before lupus Drs treated me for eczema although i know know its not. My dr gave me steroid creams to apply it does work but only temporarily because it comes back! I see my rheummy appointment is nxt month so will show her it, sorry cant say if this means disease more active - i hope not although we had some very hot days last summer & i had the worst summer of my life my lupus went into overdrive. This year i am covering myself head to toe from sun I'm dreading it. It must me difficult for you living it such a sunny climate, although Australia is beautiful, never been myself but maybe in the future! Take care x.
You need to cover up where possible & use a minimum Factor 50 sunscreen where you can't cover up,eg.face & hands.
Welcome to the site aussielupie, it sounds like your photo-sensitivity is poor at the moment, as others say using a high factor sun cream should help, although I have to say my photo-sensitivity was awful this winter (even in wet Wales, lol), this correlated with a big flare - that required an increase in steroids and change of meds. Since changing meds my photo-sensitivity and other symptoms have improved, I still never venture our without SPF cream - and top up during the day, particularly if i'm in the car for a while - so I guess I'm saying that maybe you need a meds review and hopefully your consultant will do this in Feb when you are seen again. If not possible to wait until then maybe liaise with your GP to discuss.
All the best and good to see this site is being accessed and offering support worldwide.
Thanks so much for replying kazp, Sophieh, MrsNewfly & Slowmo. It's sad for you guys that you have such major photosensitivity in England & Wales, not renound for your sunny weather!! What chance have I got here in the land of hot summer sun & wonderful beach days! Fortunately we live down South but our summers are still hot-a week of 40 degrees plus last week & 32 degrees Celsius today! With global warming, extremes of temperature around the world are definitely increasing. I do wear 50+ sunscreen & Revlon Coverstay makeup on my face, arms, hands & chest & live close to the air conditioner on hot days but can't cover up with long sleeves in warm/hot weather as I melt-my fingers/hands & feet can be cold when the rest of me feels hot & sweaty-weird-Raynauds is a pain in the b... My GP prescribed me cortisone cream for the rash but this just seemed to aggravate it so I stopped. She has suggested I take high dose cortisone 50mg daily decreasing every 2 days-does seem to help for awhile until a few hrs before next dose then the tingling & itchiness increases & I want to rip my skin off! Also I am sensible & stay out of the sun as much as possible. We are fortunate to have recently installed a 10mtre pool so I swim in the evenings-I believe exercise within one's limits is the key to sanity when one is dealing with chronic pain. Daily walks are out for me in hot weather & when my back aches so non weight bearing swimming is brilliant. I hate taking cortisone as it makes me put on weight & crave carbs. Does anyone else agree with this & have a solution. What's a good diet regime to help deal with Lupus? Any suggestions? My recent realisation that my hands are shaky is a bit scary. Do any of you other lupielous have this symptom? Thanks for listening. I've never done this before so appreciate your time. You are all so brave especially you young ones dealing with severe symptoms & if you have chn, grand chn & demanding jobs to maintain. Added to my woes (pathetic really!) is the torn calf muscle I'm nursing after racing after 1 of my daughter's 20 month identical twin boys (plus a 31/2 year old) as he headed towards a skatebowl- !2mtre drop at a local playground 2 days ago. Life sends us constant challenges. Fortunately I have a thoughtful husband & supportive family. My heart goes out to you'd all.
Hi AussieLupie and Others
I am new to this site and I plagiarised your name......apologies....
In the past six months I have become aggressively photosensitive and intolerance to heat.......last week I have been diagnosed with Lupus and am looking for help and relief..
I have had this intensive itchiness and scratchiness on the skin for the past six months....absolutely terrible.... Antihistamines (Zyrtec and Telfast are of No effect)....No relief.
Have applied cortcosteroid creams, dermeeze ointments, QV creams etc but to nil effect. In fact the ointment makes it more lubricaed and more itchy... at my wits end....
Last week they did a skin biopsy and results are I have SCLE (sub acute Lupus). All blood, liver and kidney functions are normal levels at this stage. Have a boil on the surface of the nose tip - some 1 cm from bottom of nose upwards - dead in the middle.... which comes and goes (now has come and gone twice). I have undergone Patch-allergy testing for some 100+ items and that has come negative ie all clear. I have had mild neutropenia in my blood tests for last 25+ years and had Shingles now some 15 years ago - but fully recovered.
I am on my second stint of prednisone - first one was in early Feb for a week and now in April for a week......First time my itchiness did not subside......Second time now is more effective.....Not done prednisone for more than 6 days at a time.
I am NOT on any regular medications. Have stopped my fish oils, glucosamine and magnesium tablets.
I have been seen by 3 dermatologists. The last one has prescribed 200mg hydroxychloroquine. Initially 1 tab for 4 weeks and then 2x200 mg for afterwards.
Do you think the 2x 200mg hydroxychloroquine will help? In addition do I need to see a Rheumatologist?
I can see it is going to be worse from here and all down hill. I have been a fairly active person, am now 60 years old and have had no other health issues.
The Sun appears to be biggest enemy. Just cant go out in the Sun even 2 minutes, back, neck, arms face burn....Also cannot have warm or hot shower.
Sorry to unload......Hope by some miracle you get better.......Thanks again. I want to be positive and do the right things when I am still a baby in this unwanted experience......
Hi Melbournelupie, i was wondering could you tell me did you have the skin biopsy on your face.?I have the same problems with the sun as both of you.My rheumatologist has sent me to see a dermatologist, i am due to have a skin biopsy next week.I am worried it will hurt or leave a scar,as my rash is worst on my face.I have all the symptoms of lupus ,and been suffering for nearly 20 years always with negative bloods.So i am hoping this will supply answers for me and i won't feel like a hypochondriac.Only i can't go on like this anymore the sun sensitivity and to lights also has been the worst ever this summer.I also live in Australia.So if you don't mind can you please tell me what they do when they take a biopsy?God bless, and i hope we all feel better in the winter.
My biopsy was taken from my left elbow....They appear to have taken 3 small cuts... 2 cuts of 3mm deep and 1 cut of 4 mm deep. It was sent to the histolab in Melbourne by my dermatologist.
Histolab report is the one which identified that I have lupus. I am extremely photo sensitive - going out in Sun burns as well as warm water in the shower is a killer.
based on the histo report of lupus, II have been prescribed 200mg Plaquenil (hydroxchloroquine). For first 2 weeks I have been advised 200mg and then to start with 2x200mg
Hope this helps.
Dear Melbourne Lupie,Thank you very much for your answer ,it is very helpful.I was worried they would do biopsy on my face.Thank you so much for the info on the labs.I will remember that.I"LL try and ask if mine can be sent there.I know what you mean about the sun.It feels worst on my face, and feels as if someone burnt me with acid.I"ve come to hate the sun and summer.Even though the lighting in stores and other places burns as well and makes me feel ill too.At least at home I've been lucky and have been given quite a few of the old incandescent bulbs,which don't affect me.My rheumy is trying me on cortisone for now.I will ask him about Plaquenil,but i don't know if i can have that as i am over 60 and have Glaucoma.Thank you so much again.God bless ,and i hope you keep as well as you can.
All the best with your biopsy. After they diagnosedme with Lupus, they prescribed Plaquenil - the anti malarial tablet 200 mg per day for 2 weeks and then 2X200mg per day.......However they asked me to have a baseline eye test performed before I start the Plaquenil - so that Changes can be monitored going forward.
Life now is going to be NO summers, No sunlight, DAILY sunscreen, full sleeve clothing, topical steroid creams for leisions/eruptions and plaquenil for internal.....
I am 60 and was looking forward to a good retired life - going out and visiting places.....
Lets keep in touch
Hi MelbourneLupie .,sorry i didn't reply earlier.I just now saw your post.Yes i would love to keep in touch.It will be interesting to see what comes of my biopsy.I am having mine done on the 13th of May.Unfortunately he is doing mine on my face.Hope it doesn't look too bad after.I know what you mean about no summers.I used to love going to the beach and i loved sitting in the sun on a nice day.Now i am scared of all these things.This life sucks doesn;t it?Anyway good luck with the Plaquenil, let me know how you go with it.God bless and i hope you have better days soon.
All the best for your biopsy on the 13th May. At least it will establish whether it is Lupus that you have or isit just some other eczema or dermatitis....and then you can go from there.
I started on Plaquenil 1x200mg now some 10 days ago...... Initial few days I had constant headaches right thru rhe day, but that appears to have slowly settled. I have been asked to increase the Plaquenil after 2 weeks - ie twice a day 200 mg tablets.
I am very very scared to increase it for I believe there is an overall life time limit of 1 kg of hydrocchloronique (Plaquenil) that one can take....
My symptoms are still bad. I havefor first time rashes in non-sun exposed areas. Rashes on the upper arm and back now (these are covered and dont have sun exposure).....
Sun is still a killer. I sit in dark rooms, I lost my job a week ago....I turned 60 this year.....Need to cheer-up with these gloomy prospects and need to think there is Life after Lupus of skin diagnosis and lefe after my employer.....
Lets keep in touch
lina61 Dear MelbourneLupie,i have been wondering how are you going now with the rashes and sun sensitivity?Has the Plaquenil started to ease that yet?And are you having any problems with the Plaquenil?I hope it has started to help you.I had my biopsy and there was no lupus cells found.I am still very sensitive to Sun and lights in shops and anywhere that has Halogen or fluorescent lighting or energy saver lights. I am a bit better with LED lights.The derm said i should not have taken the Prednisolone before having the biopsy.So we don't know if that skewed the test.Joint pain is getting worse by the day.And still searching for answers.I go to see the rheumatologist next Tuesday we will see what he says.So for now i have UCTD. Hope i get something definite soon.
Good that they did not find Lupus on your biopsy, but it must be frustrating not knowing what your condition is.
Yes I have been on 2x200mg of hydoxychloroquine daily for the last 2 months. It does not appear to have eliminated my skin eruptions and itchy symptoms. These continue and my lips too get very dry. The eruptions (mild only) spread identically on both sides of my body - firat the face, then the arms - forearm, followed by biceps, then shoulders, then back waist, then shins on both legs, then calf, then thighs and now cheeks of the bum.......The spread has been gradual (over six months) and identical times on either side of the body.....It is frightening - it is like the disease is slowly engulfing or circling me.
The last few days the lips have been very very sore and dry.
I am told plaquenit may even take three months.....So I am hoping as I have finished 2. I am resisting taking prednisone, as I dont want to get dependent - so try to live with and tolerate the itchy skinn spreading infections.
Good luck and take care
lina61HiMelbourneLupie, thank you for getting back to me.I am sorry to hear about your rashes still continuing.My Rheumatologist is now convinced what i have is Autoimmune with inflammatory Arthritis.I have been in agony the last few weeks .I seem to be getting worse.He has now given me a script for Plaquenil.He originally wanted me to go on MTX but i am too frightened of that,as i have liver problems of many years.Has the Plaquenil started helping you with joint pains at least.?Hopefully it will help stop your eruptions in a month's time or so.He said to me it could take up to 3 months before giving full effect and maybe even longer.I hope you don't mind me asking, has it affected your hair at all?I want to take the Plaquenil, but i am frightened it will make me lose more hair.But i have to do something as i cannot carry on like this.I understand what you're saying about the Prednisolone.It would be very easy to get dependent on it.I felt wonderful the short time i was on it.But even in that short amount of time i had already put on weight on it.Good luck to you too.Ihope you improve soon. God bless.