Some of you will recall back in February that I had a flare with rash that my Rheumy, Dr A, didn’t recognise as a Lupus rash. He is still adamant it wasn’t Lupus then but that the progression, which 2 weeks later was confirmed by the Dermatologist as a Lupus rash, was! 🤷🏼♀️ After a 7 week course of steroids the rash faded but didn’t completely disappear. It returned with a vengeance in April and he gave me a steroid injection because the tablets had really upset my innards. It did nothing for the rash and 2 weeks ago I started yet another long course of Prednisolone. He also encouraged me to try Mycophenolate or Azathioprine and ended up prescribing me Myfortic . I was due to start it last Sunday but really didn’t have a good feeling about it when, apart from the unsightly rash from head to toe, I felt the best I’ve been in about 2 years. So I asked to see my old Rheumy, who I discovered is still there, for a second opinion but she has a long waiting list so they offered me an appt with the other female Rheumy who I had seen in 2018 and is also very good. A friend had suggested that I tell them I prefer seeing a lady so I think that helped.
Dr D went over everything I’d written down, looked at my skin and looked at my records on her computer. She suspects that this latest flare was UV light induced and that luckily my skin is the only organ affected. She said she totally understood my reticence to start Myfortic and given my recent bloods and how I have felt for the last month (ie more energy and stamina) she feels it best to see if the steroids will see it off altogether this time. Of course steroids have their own risks to health so she ordered more bloods including glucose levels, and has ordered a DEXA scan and advised me to drink at least 1 pint of semi-skimmed milk per day. Due to keeping out of the sun she also recommended 1000 units of Vit D3 per day.
She said the Dermatologist had suggested I went on Methotrexate for the summer months if the steroids don’t work (Dr A never told me that! 😳), and to protect my innards she said I could have this as an injection. If I could only use it for summer months and not indefinitely that is a good thing. Has anybody else done this or heard of it? I thought these steroid sparing drugs took months to kick in.🤔
Anyway, she’s left it as a case of ‘wait and see’. She said she’ll see me again in 2 months time but if anything goes wrong before then to let the Helpline know.
I feel much happier now and hope and pray the steroids will be enough to put my Lupus back into remission. 🙏🏻
Before coming home Hubby and I had lunch in the nearby garden centre. The notice outside their toilets made me smile as I thought it certainly applied to the Rheumatologists I’ve seen. Hope so anyway.🤞
Hoping you are all as well as can be and, like me, enjoying the cooler damper weather.
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Spotty-ewe
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Oh, Spotty, I do feel for you! I know we were both diagnosed after terbinafine and we seem to have been on parallel paths since then! I had a massive flare, like you’re having now, in 2019. I put it down to a reaction to a white filling although my (lovely) dentist disputes this. I was put on prednisolone, as you’ve been, and it then took me over two years to come off it. Although it did make a difference quite quickly. Methotrexate was also suggested and I started on tablets which really upset my stomach so I reluctantly progressed to injections. However they have been wonderful for me. I take 15mg weekly and, apart from the odd spot, my skin is virtually clear. At first I felt washed out the day after the injection but with time that has improved to the point where I hardly notice a difference. I saw my dermatologist in May and she has suggested I reduce the dose to 10mg weekly in October together with a reduction of hydroxychloroquine to only one 200mg tablet daily. I’m a wee bit wary but I’ll give it a chance as I’ve now been on 2000mg hdxy weekly since 2015. So I would advise you to give it a go. Has the amount of mtx been discussed? I was told it would take three months or so to kick in but I saw a difference quicker than that. I still avoid the sun like the plague but that is becoming second nature now! I really hope you find something that works for you and let me know how things go. Love and hugs 🤗
Hi Barbara, yes we do indeed seem to be on parallel paths. Thank you for the info about Methotrexate and how you’ve got on with it. That is very reassuring, thank you. So your Dermy has suggested reducing the dose in October but not stop it. I wonder why our Dermy (who I haven’t seen as yet, she just communicates with the Rheumy) has suggested Methotrexate for the summer. Do you think it is a ruse to get me on it and then they’ll just keep me on it?🤣 I put myself onto double dose Hydroxy (400mg daily) as soon as the rash started up again in April and have remained on that dose ever since. Luckily the Rheumy approved. At least if the steroids don’t see it off this time I feel a bit happier about starting Methotrexate . Dr D said she favours it herself over the other steroid sparing drugs and said most patients feel a difference in 5 - 6 weeks, despite the booklet she gave me saying 3 months. She hasn’t as yet mentioned a dose. I suppose she’s waiting to see how it goes with this latest course of Pred.
Do you get bone protection in the form of Vit D3 pills on prescription? I bought some at vast expense from Holland & Barrett only to be told by a Lupie in England that she gets hers on prescription. I used to love the sun but since being diagnosed like you I have avoided it and since this flare and recent strong sunny weather I’ve stayed indoors until the back garden has been in shade or the sun is going down. I don’t go out in the car on sunny days because of being trapped in the sun. Luckily it was raining on Thursday when I saw the Rheumy so that was good. Never thought I’d love rainy days!
Thanks again for your experiences, reassurance and kind wishes. I’ll let you know how I get on. Take care Barbara. Love and hugs back to you. 💕🤗xx
Quick reply. Yes, I get vit D on prescription. Dermie specified it on repeat. (My son buys it in Costco. He has ulcerative colitis). I can’t increase past 2000mg hdxy weekly because of my weight. I still go out in the sun but I cover head to foot. Have you looked at the Solbari website of Australian sun proof clothes? I have an excellent hoodie, rash vests, plus hats and a neck protector that you can pull up over your face. I drive wearing it and yes I do look like a bandit! Who cares? 🤣
Many thanks for that Barbara. I’ll have a look at the Solbari website. A bit annoyed Dr D told me to buy Vit D over the counter! I’ll ask my lovely GP next week, although I have loads of Holland & Barrett now.☹️ Enjoy your day Barbara. Xx
Hi, I have skin lupus and very photosensitive particularly this year.
I bought the rash guard long sleeve TShirt from one of the surf clothes web site. Recently when in M&S found they had some short sleeved UV protection tops in the Good Move range . Might be worth looking at . I find it very good next to my skin also zip up tops. Hope this might help as I know how uncomfortable some materials can be on the skin.
Thank you so much for this Haired. I’ve just literally sent an order to Solbari for hat, loose coat and neck protector but I’ll definitely check out M&S. Take care and enjoy your weekend.
I wanted to ask you how you take 2000 mg of Hydroxy each week? Do you take 2x200mg alternate days with 1x200mg in between? I’m planning to reduce mine to that quantity as I’ve been on 2,800mg per week for 3 months now.
My Solbari clothes arrived and they are great. Thanks so much for telling me about them. You can’t see much of my hat the way they’ve printed the photo on this message, but it is large and VERY shady.
Hello, Spotty. I take two tablets on Mondays, Wednesdays and Fridays and one tablet the other four days. I put all my tablets into a dosette box every week or I would never remember what day I’m on! And I usually also ask Alexa to remind me on the days I take the second one! I do like the photo of you all dressed up for the sun! If you click on the picture it opens fully so I could see your hat. I have the same one in pink/beige and it was perfect for my holiday in Norfolk last month. I ventured out every day in temperatures up to 30 with no ill effects. The bandit mask is great too as my neck is very susceptible to sunlight. Although I must admit I prefer our northern cooler temperatures. I hope your rash is fading now and you’re tolerating the mtx. 😘
Many thanks for letting me know your Hydroxy regimen Barbara. Hubby makes a chart of what I’ve to take and is my Alexa.🤣 I still have 10 days left on Pred so Rheumy is waiting to see if it has done the job on its own before starting me on MTX. Yes rash has faded and there is little evidence now of it ever having been there. 👍🏻 So I’m praying it stays away and that I won’t need to start MTX for the time being.🤞
Like you, I prefer our cooler temps up here and have been enjoying the cooler wet days we’ve been having here in D&G whih has allowed me out more. Despite having the Solbari clothing I still keep out of the sun as much as I can until I’m sure the Lupus has gone back into remission. 🙏🏻
Good to hear how successful your Solbari clothing was in Norfolk, We head down to Wisbech in September (as we do every year) so look forward to the clothing protecting me then.
Thanks again Barbara. Enjoy the rest of your week. 🤗x
Hello dear Spotty, that was an interesting and innovative idea to be on Methotrexate for just the summer months. The DMARDS usually take up to 3 months to work but you could time it better for next year if you've started it 3 months before spring/summer. I do think that Rheumy appt was really good anď thorough and i'm so pleased you feel better about going onto these drugs. Its a big step!.
I will keep my 🤞 that this course of steroids knocks the rash out completely and you won't have to worry about trying MTX yet.
I hope you have a better week spotty and i'll be in touch soon. I'm all ready with my notes. Xx🤞💕🤞🙂💕🤞💕🙂
Hello dear Misty, good idea to start the MTX early next year if it seems likely I’ll need it. I’ll mention that to the Rheumy next time I see her. Thanks for joining me in keeping your fingers crossed that the steroids zap the rash this time round.🤞 I’m hoping so when it is fading and I feel the best I’ve been for such a long time (hope I’m not speaking too soon!)
I’ll be thinking of you on Monday and 🙏🏻 for a good result. I’m glad you have all your notes ready. I did too but still forgot to mention or ask a few things!🙄 Then it won’t be long until your Rheumy appt. I always have taken hubby in with me for my appts as he remembers things I don’t so if you fancy taking your Mum with you, I would.
Let me know how it goes Misty. Take care. I’ll be thinking of you. 💕🙏🏻💕🙏🏻💕🤗😘xxx
Thank you spotty for your messages and good wishes for Monday. I will be in touch very soon. Thanx for all your 💕 &🙏's. I'm sure you will bring me luck. Xx💕🤞💕🙏💕🤞💕🙏💕🤞💕
Thanks for your kind words Bonny. Glad you enjoyed the sign - it definitely made me chuckle too when I saw it. I hope you are keeping as well as can be at present. Take care. Xx
I’m a retired teacher so totally sympathise. Not easy with our conditions. But thankfully not long until you can relax and unwind. Take good care Bonny. Xx
Hi Spotty 🤗Sorry to hear you're still wrestling with the 🐺I hope that the pred works it's magic and you continue on the up. I'm on Methotrexate..have been since end of 2019. I have been taking it orally but recently started injections to increase uptake of the drug. It's been a game changer for me and my rashes are more manageable. I take it all year round though. I did notice the difference within a month of taking the tablets.Sometimes it's nice to be seen through fresh eyes. This has happened with me recently n I'm getting alot further with a new dermy n rheumy!! At first I was reluctant coz I was having to retell my case to new people but it really has moved me forward. I've had my Vitamin D checked..Dexa scan..B12 checked too..these haven't been done before with my previous team so I'm viewing it as a change for better! I hope it's the same for you 🙏🤞
Love the sign 😁thanks for the chuckle..keep chuckling!! 💜🌈Xx
So good to hear the MTX has made such a difference to your condition Kat. You’ve had such a hard time of it in recent years I’m so pleased to hear this and that your new team have made such an improvement.👍🏻👍🏻 As our Dermy is SO over-worked I doubt if I’ll get to see her anytime soon but I am in the system for an appt - no doubt when the rash has all gone.😆 Good to hear your new team is looking after you so well and I have much more faith in Dr D than Dr A so hopefully things will improve for me too.🤞 Thanks for the reassurance Kat - I’ll accept the MTX more positively and happily if it does become necessary. Hoping you are coping with the summer ok. 🙏🏻 I often think about you Doll. Glad you liked the sign. 😁 Take care. Xx
just out of curiosity, did you try allergy pills and medicated powder (with cornstarch) for rash? Was rash - hives? I had a horrid hives rash as my first welcome to lupus 😳🙁. Found I I suddenly, at the age of 68, became allergic to wheat, eggs, milk and soy. Stopped eating them and rash has not returned. I found steroids didn't help as much as the allergy pills and powder.
Yes, GP tried allergy pills and creams first but they made no difference at all. Only the steroids and Dermavate saw it off. Rheumy suspects this latest flare was UV light induced from holidaying in the Outer Hebrides in April where it was very sunny most days with reflections off the sea as well. Despite wearing factor 50, a shady hat, and keeping covered up she thinks the light was enough, right on the heels of the previous flare and end of the first long course of steroids, to set it off again. The rash is fading fast on this latest course of steroids so I think it is the Lupus.
How awful to suddenly become allergic to all those foods, I’m so sorry to hear that. I turn 68 in a few days time so hope I don’t receive any allergies as a birthday present. 😩 I hope you are keeping well otherwise.🤞 Take care and thanks for your kind wishes. 🤗x
I'm sorry it is truly a flare. 🙁. I still have decided to stay out of the sun. My skin starts to feel tingly!! Unfortunately between not being able to pop into any restaurant for a quick bite and not being able to be out in the sun, I am not much fun to be around....🙁. Glad you're getting it under control. ❤️
My skin reacts exactly the same way as yours at present if in the sun for even a few seconds eg putting recycled items into the bins. I have just invested in some UV protection clothing from Solbari which should be here within the next week or so. It isn’t cheap but if it improves my quality of life it is worth it. They have given me an offer of £20 off my next order if I introduce a friend and they get £20 off too, so if you fancy it, let me know. I wish somebody had introduced me as even with a 10% welcome offer I only saved £17 not £20.☹️ My stomach has been badly affected by the steroids and this time round a friend told me about the gastro resistant variety so I swopped to them after 1 week on ordinary Prednisolone and that has made a huge difference. But I do suffer from the effects of a hiatus hernia and oesophageal reflux so have to watch what I eat too. I think some of my non-Lupus friends think I’m a drama queen with all I can and can’t do. 😁 So be it. Fancy meeting up for a cuppa - sounds like we’d understand each others problems 100%. 😉 xx
that's funny because I have a hiatal hernia too, although only shows up on scans occasionally which is strange and doctors won't admit to it even being there! And also reflux. Right now, on lupus AND leukemia meds, my throat nodes are swelling immensely like they did last time on leukemia meds, and yet the big node on my jawline is almost gone, just like last time, basically biopsied as leukemia. I have a bunch of UVF shirts and jackets. And I just bought a pair of regular light weight white gloves for driving in the sun, but when it's hot out it's hot out and having to wear a jacket is not fun. And yes, my grown daughters think I'm a drama queen, especially with the food allergies....
Supposed to get really hot later this week so turned off A/C's and opened windows to give them a break and get some fresh, if not hot and humid, air into the house. Have a small fan going which actually seems to be working. I would love to meet for a cup of coffee but would have to travel across the ocean lol as I'm in the USA 😁😁.
Also having trouble getting meds from my favorite pharmaceutical companies and that's not going well. Im allergic to s lot of ingredients. My anti anxiety meds are now causing more anxiety, from a company I had issues with several years ago.
This morning I awoke to joints aching all over...resulting playing with grandson for two days? I am really out of shape lol. But not really funny. I usually get exercise while food shopping but can't make myself do it. Maybe tomorrow when I see my local oncologist, who had been a god-send, I will head over and go food shopping in her town. Store is bigger and less egos walking the aisles!!
Unfortunately I'm trying to stay away from steroids as they really affect my thyroid in a very bad way. Also going for nuclear stress test in two days and really nervous about that, so don't want to mix steroids into the picture.
I’m SO sorry to hear you have leukaemia on top of everything else. You really are having a horribly tough time of it. 😩 What a shame we are so far apart, and I can’t swim either so can’t even meet you half way. 🤣 We in UK are having problems getting certain brands of Meds too and some are so harsh on the digestive system, and of course it is these that are easily available. 🙄 I’m pleased you have daughters and grandchildren to help distract from your terrible conditions. Lupus robbed me of my 2 boys who I lost at 20 and 22 weeks and the general pelvic infection I had after losing the 2nd left me unable to conceive again. But as a teacher I got to know many children, a few of whom I’m still in touch with, so that does help.
I hope your nuclear stress test goes better than you fear.🙏🏻 I’ll be thinking of you. Sending healing hugs. 🤗🤗 xx
ohhh I am so sorry about the loss of your babies 🥺🥺🥺. So very sorry .....my mom was a beloved kindergarten teacher for over 25 years that's what I wanted to be but things don't always turn out as we planned...
Sorry to say dont be too happy about my daughters distracting me lol. Only in negative ways, tho youngest is better than oldest. And my grandson (who will be turning 5 in August) tells me he hates me all the time 😂😂😂😂 and I'm only allowed to kiss him on the head 😂😂😂 but I know he loves me. My oldest daughter I'm not too sure about...tho might be fear as mentioned somewhere on this site. But she will def miss me when I lm gone !!
I can't swim either lol. We'd be sharkbait 😂😂😂😂😂😂😂
Thanks for your understanding. But I’m sorry to hear your relationship with your daughters and little grandson isn’t as loving and supportive as it might be. ☹️ Families are very strange aren’t they? I know mine is!🤣 My closest friends are far more like family than my family are!
I don’t think we need worry about the sharks - they wouldn’t fancy us with the toxic drugs we are on.😝😂
I too have ACID REFLUX, hyennial hernia, Larnyx CLOSED 75% (balloon surgery to fix), closed esophagus (Balloon surgery- twice) & Nodule on VOCAL CORDS yrs ago- always thought “it was LUPUS” looking for WEAK AREAS to attack. 💜🥴💜
Djlr I actually think that all of your issues as mentioned came from that hiatal hernia and the acid reflux....acid reflux destroys the esophagus with the acidity it produces. I have those same issues but mine came after my thyroidectomy for thyroid cancer. Paralyzed vocal cord nerve made my throat a nightmare 🙁
The others started in my late 30’s as I was realizing my joint pain from early 20’s, fatigue got worse into late 30’s then diagnosed in finally in early 40’s.
I had half my thyroid removed in my late 30s due to a haemorrhagic cyst which they weren’t certain was cancerous until it was removed. Luckily it wasn’t and luckily my thyroid function has remained normal so far despite only having right half. But whether Lupus was linked with this condition or not I don’t know. Certainly another person with Lupus I know of (daughter of a friend) followed exactly the same path as me - appendix, gall bladder then thyroid. Strange eh? Xx
I agree that Lupus seems to target our weak areas which in a way makes sense when it is our immune system gone mad. It sees a problem and decides to attack it. As I mentioned to JG below I went through a series of events which another younger Lupy went through too ie appendix, gall bladder and then thyroid. 🤷🏼♀️ There is so much to learn about this crazy condition . xx
So pleased it made you laugh SV.👍🏻 Thanks too for your very kind wishes 🥰 I hope you are keeping ok at present.🙏🏻 Love and hugs for you and the girls.xxx
BUT, some of us tend to become desensitized to them or they just don’t HELP ANYMORE like they did when we 1st started getting injection for extremely Bad Flares.
So - hope it works this time for you 💜 We also have to keep in mind that as your Rheumatologist pointed out - PREDNISONE DEPLETES “CALCIUM” from our BONES = “OSTEOPOROSIS” later in yrs. So always use STEROIDS as a Last Option and Lowest Dosing, if possible to get thru extreme Flares.
Your RASH sounds a lot like one Lupus Friend, who discovered that the SUNLIGHT & UV LIGHTS were penetrating her LONG SLEEVES & Long pants which gave her Red Tiny bump rash on Legs, Arms, etc.
She was told to “APPLY” SUNSCREEN “ALL OVER” - under CLOTHES - it stoped the RASH.
She was just EXTRA SENSITIVE to UV LIGHTS & SUN BRIEF periods of Sun, Car Exposure, etc. She still has a high Sensitivity to different things, made worse by a NEW RHEUMATOLOGIST who STOPPED her HYDROXYCHLOROQUINE for a couple months 🤔🤔🤔🤔
Once restarted- she got better VERY SLOWLY since it DOES take MONTHS to BUILD HYDROXYCHLOROQUINE into our system- (initially 3-6 months)
Hope you are better & you were GREAT to be “Proactive” and get a 2nd OPINON -
We are our BEST ADVOCATES & we have to “LEARN so MUCH” to stay ahead of ALL that Lupus can do to our Body. We never know what it will ATTACK NEXT 🥴🫠😳
But - we share & help each other from our own experiences-
Thanks so much for sharing your latest Lupus trial & learning event. 💜
Many thanks for all the info Djlr. It does sound like your friend is simialr to me but I must have changed over the years. I used to love being out in the sun and I grew up in Qld., Australia so had plenty there. 😉 But since 2012 my flares always seem to present themselves as horrendous rashes spreading from torso upwards and downwards. Sadly the steroid injection did nothing for me but this latest course of Pred (starting at 30 and tapering down, with 3 weeks left to go) as well as double dose of Hydroxy (400mg per day) is making the rash fade quite quickly, so fingers crossed it doesn’t come back otherwise the Methotrexate will be necessary.☹️ Does your friend use UV protective clothing? I’m hoping when mine arrives it will make a big difference to me. 🙏🏻
Thanks for your kind words. At 68 I feel I am responsible for my own body and if I don’t feel comfortable with suggestions made by medics I want another opinion before I decide whether to proceed or not. I gave in to whatever medics recommended when I was younger and lived to regret it, so not any more.
Thanks again for your input and experiences Djlr. Helpful to us all. Take care. Xx
MY FRIEND “always” wears Long Sleeves, Long Pants & NOW has SUN SPF UMBRELLA for just walking to car, etc
She constantly has to WEAR “full body” Sunscreen- EVERYDAY to keep the Rash under control. Hers started in late 60’s too.
Took a long time to get at this SIMPLE deduction that SUN was just penetrating her CLOTHING OR body reacting to the HEAT …..
Be careful on too high a DOSE of Hydroxychloroquine- we need our EYESIGHT too 💜😊💜
And stopping Hydroxychloroquine- causes major problems as it HELPS keep LUPUS at “BAY”. Without it, we are a bit defenseless- I have seen several people have to STOP due to EYE TOXICITY & Lupus does go out of control.
SUCH a SIMPLE “DRUG” for MALARIA- that’s helps LUPUS PATIENTS tremendously.
Yes, I’m planning to buy an umbrella too. My first horrendous rash started when I was 57 (11 years ago) and fortunately I haven’t had another as bad until this year.
My Solbari UV50+ protective clothing arrived today so I’ll feel more confident going out again, but will still avoid the sun even then as much as possible, because as you say the heat even seems to aggravate my skin. To think I grew up in Australia (Qld) when I hardly ever wore a hat or sunscreen. Paying for it now!
It seems now that certain people have a predisposition to their eyesight being affected by Hydroxychloroquine hence the genetic research/study looking at those who’ve been on it for 15 years plus without an eye issue compared with those who have developed eye problems. I’ve been on it for 11 years now and had managed to get down to 3 tablets per week but after about 6 months on that dose I flared. I per day seems to be best for me when not in flare. Everybody will be different so it is a bit of a trial and error and juggling act.
Thanks again for all your info and experiences via your friend. Very interesting and helpful to many on here. Take care Djlr. X
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