Hello all you lovely friends. I haven’t posted for some time as I’ve been having one thing go wrong after another.
I was taken into hosptial on 23rd January with a coronary artery spasm and intense pain in my upper abdomen and back with vomiting. After chest x-ray and ultra-scan it transpired I had a dilated bile duct and my liver function was right off the charts. And NO I definitely don’t drink. I don’t know how many times I was asked that. 🤣 I was in for 3 days and released after an MRI which revealed a pancreatic cyst. I was taken by ambulance again to A&E 3 days later with a relapse but sent home after anti-nausea medication, another chest x-ray, and having fluids given via a drip.
At home I slowly began to improve and although my liver function is still not back to normal it is dropping all the time and my GP is confident it will be in normal range within the next 2 weeks.
BUT a rash started on my back on 1st February, just as wee spots then, and has continued to spread since then. I saw my Rheumy on 3rd Feb but he doesn’t think it is Lupus related. 🤷🏼♀️ The rash is now driving me crazy with an incessant itch! 😫 My back and scalp are the worst and despite having had 5 days on 30mg of Prednisolone and 2 days on 20mg it is still spreading and torturing me with the itch! I am applying Dermavate cream 2-3 times per day too so I don’t know what more to do. The last time I had a rash as bad as this it was a reaction to the drug Terbinafine and led to me being diagnosed with SLE just over 10 years ago (hence my user name!🤣)
Whilst all this has been going on I’ve also had a very painful left shoulder which recent x-ray showed to be arthritic. I’ve had the pain since last April. Last week my GP prescribed Lidocaine pain patches and at last I’m beginning to get more movement and less pain. Long may it last!🙏🏻
Anyway, I phoned my Rheumy helpline today about the rash and Rheumy still doesn’t think it is Lupus related and has referred me with a copy of this photo (taken this morning) to Dermatology. In the meantime I’ve to continue with the Prednisolone and Dermavate. I’m also using a sheet of wee squares of cooling gel at my back which helps to take the edge off the itch when my back gets heated sitting in a warm upholstered chair. Sadly it only lasts for about an hour when I have to put it back in the fridge.
If anybody has any other suggestions of how to cope with the itch or recognises what this rash is, please let me know.
Thank you all for your kind support in the past. I really appreciate it.
Hoping this finds you all as well as can be.
With love and hugs to you all.
Spotty 💕🤗😘 xxx
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Oh, Spotty, what a time you’ve had!!! And I do feel for you being virtually accused of being an alcoholic - I had the same experience! WHY won’t doctors believe us???I hope they’ve got to the bottom of your problems and you’re getting the treatment you need. But, I’m even more sorry to say it IS a lupus rash here is a photo of my back in 2015. Dermatology did diagnose me and it did eventually clear with dermovate and pred. Dermacool helps with the itch but the rash takes a few months to go. Sending (very gentle) hugs to you
Hi Barbara, I remember you having an horrendous rash when we first met on here and it does look very like the one I had which led to my diagnosis in 2012 (see below). BUT my current Rheumy doesn’t think it is a Lupus rash and has referred me to the Dermatologist. 🤷🏼♀️ It is the itch that is driving me mad and I have no idea what has triggered it this time whereas it was Terbinafine the first time. Two flares I’ve had since then were nipped in the bud by the steroids and Dermavate but this time they’ve had little or no effect so far, possibly because it was allowed to progress when Rheumy didn’t accept it was Lupus on 1st February? 🤷🏼♀️ I hope you are keeping ok just now Barbara and thanks so much for your input. Hubby had some Dermacool so I’ve started to use it too for the itch. Thanks for that. Take care Barbara. Xxxx
Oh Spotty bless your heart. I am so sorry that you are so poorly. I do not know what the rash is but it looks like images I have seen from friends who have AI and in particular Lupus. Sorry not to be of much use but with regards the itching a strong sedating antihistamine might help you. I hope you get the answers and treatment you need. Sending you huge Cwtches and lots of love xxx
I agree with you Cecily that it looks like Lupus rash and it is progressing in exactly the same way as it did 10 years ago when I spent the whole of our 3 weeks on Vancouver Island in walk in clinics, hospital and dermatologists. The itch was horrendous and ruined our holiday. But my present Rheumy has surprised me by assuring me it isn’t Lupus related and has referred me to Dermatology. So I’ve been worrying what on earth it could be. Thank you so much for your support and wonderful cwtches Cecily. It is such a comfort. Please give gorgeous Finlay a cuddle from me. 🤗😘xxx
Finlay says thank you 🐾🐾❤️. He is sat so tight to me he is like a second skin. I hope the Dermatologist is far more helpful and proactive. My first Rheumatologist responded “ I don’t deal with skin” when I showed him my rashes 🙄. Xxx
Aww, what a wonderful second skin you have there. 😉 🐶 He must be such a joy and comfort.🥰 Yes, I’m hoping the Dermy will be more helpful than my Rheumy who evidently has written books about Lupus in children.🤷🏼♀️ You’d think he’d have seen a lot of Lupus rashes in his time. 🤔 What a crazy response from your first Rheumy when the rash is one of the major symptoms! I don’t think they realise how much anxiety they create in us when they appear puzzled by our symptoms and rashes. If it isn’t Lupus, what is it then? Hopefully the Dermy will confirm one way or the other. I hope you are keeping as well as can be at present Cecily. Take care. 🤗xxx
please let us know how you get on. I have the opposite to you I am burning everywhere and I mean everywhere. Being referred to a Gynaecological Urologist and having a scope up my nose to look at my vocal chords and voice box tomorrow. There is always something with us isn’t there? I am fortunate that my skin is not too bad currently though and I have never had a rash as bad as yours bless you so I should not moan. Xxx
Oh spotty that is quite a rash you’ve got going there, you poor love, yes I’m sure the itching must be driving you to distraction, it’s very much like the rash my dad had when he was diagnosed with SLE too, he was covered in it. You don’t mention antihistamines, are you able to take them?
Thanks for your reply Diane when I know you are going through so much yourself at present. Yes, the rash is just like the one I had in 2012 which like your Dad’s literally covered me from head to toe. So I was staggered my present Rheumy is convinced it isn’t Lupus related. My GP gave me antihistamines but they made no difference at all so he started the Prednisolone then, but for now (8 days later) the rash is still slowly progressing though nothing like as furiously as it did the very first time I had it as you can see in the photos I attached to my reply to Barbara. I can’t wait to see the Dermatologist, so hope it is soon.🙏🏻 Hoping you are feeling a bit better now Diane. You’ve had a rough time of it. Take care. 🤗😘💕xx
Bless you thank you 🙏 it’s nothing compared to what you’ve been going through 😞 I’ve just had a thought as you made me think of our little girlie who came out with an awful rash recently after having a virus and ended up in the hospital which turned out to be post viral urticaria , didn’t you say you’d recently had a cold virus, could that maybe have triggered your lupus to become active and you’ve been going through a lot lately, stress and being poorly and then came off your hydroxy? It’s just a thought although the rash does look a bit different and hers did settle down with piriton. Did you have a first generation anti histamine, I believe they’re better than second generation although they can make you drowsy. If the itching gets too much for you can you go to A&E if you’re not getting any help quick enough?
I’m finding it surprising given your history that the Rheumy isn’t linking it with your lupus given your history🤔 ! 🤗💕Xxx
I think your theory is very logical because yes, I did have a cold virus which I didn’t think was too bad, but they even wondered in hospital if the liver dysfunction was due to a virus, although my GP said he’s 90% certain it was the result of drug toxicity due to long-term use of Nitrofurantoin as a prophylactic . 🤷🏼♀️ And as you say, being off the Hydroxychloroquine for about a month gave the Lupus the freedom to attack unhindered.
The antihistamine my GP gave me was Chlorphenamine if that means anything to you? It made me very drowsy but did nothing for the rash so I came off it again and now only use a tablet or 2 before bedtime to help me sleep. I did wonder about going to A&E if the itching gets any worse so I’m glad you’ve suggested that. I’m hoping I’ll get news from Dermy tomorrow if not later today.🙏🏻 I’ll keep you posted Diane. Take care. 🤗😘xxxxx
Oow that’s interesting about the nitrofurantoin, I didn’t know that! I’ve just reduced mine to 50mg nightly, I think the urologist wants me to come off it but I feel a bit nervous about it, he’ll review the use of prophylactic after my flow test whenever that may be! I did come off it about ten years ago when a urologist said I could develop long term irreversible lung problems if I stayed on it so came off.
Good idea to take the chlorphenamine (piriton) before bed.
I have everything crossed for you hearing something from Dermy very soon 🤞
No, that was news to me to re the Nitrofurontoin especailly as I’ve been on it for 6 months of every years for many years now, alternating it with Cefalexin. When I asked my Urologist if I could build up a resistance to a prophylactic he assured me there are plenty of antibiotics out there that could be substituted. But as I already have a resistance to any penicillin varieties, an allergy to Trimethoprim and now have possibly suffered toxicity from Nitrofurantoin my options are dwindling. That’s very scary that you were told you could develop irreversible lung problems if you stayed on it. Not a drug to mess with by the sounds of it.
Thanks for keeping everything crossed for me Diane. I hope it isn’t too long until you get your flow test too. 🤞🙏🏻
Let’s hope they develop another one by the time we need it.🤞🙏🏻 However, hubby who was once a pharmaceutical rep many moons ago, thinks it unlikely drug companies will put money into developing a new antibiotic as they are not a high value drug so they don’t make a lot of money from them. 🙄 Isn’t that just typical? Making money comes first. ☹️ But we can still hope.😉 xxxx
Nitrofurantoin was added to my allergies list a fortnight ago.
Found had urine infection after bad reaction to MRI contrast Gadolinium.
I think this was because although eGFR was OK when measured month earlier, neuropathy was making it hard to urinate.
But whilst had bad side effects to Gad. I then had Strep B Agalactiae infection discovered and had the Nitrofurantoin.
Had Nitrofurantoin about 5 times. Twice it has resulted in ridiculous level of pain across the front under the diaphragm. Assumed it was liver, spleen, bile duct as felt that way.
(Recently, 111 advised go to A&E who said it was all a flare. No liver function tests done.)
Pain is worst at night, and by the time get examined mid afternoon, or weeks later they find nothing. Was swollen at the time but earlier 111 over Christmas, said 10 hour wait in A&E so stay at home and drink lots of water.
Re: Nitrofurantoin. I believe bad reactions may be due PNH and / or AIHA - that under the right conditions (for example a pre-existing flare) can occur together. This may be why only sometimes people get a bad reaction. I had haemostasis and lymphocytes plummeted.
As always nobody has investigated anything.
In the end I contacted my rheumy who has prescribed 2 months prednisolone, starting at 20 mg and decreasing each week by 2.5 mg. Prescription (and I hope a steroid card) will arrive in post soon. Appt needed to be by Zoom as not local.
It was a relief to have someone put a plan in place after trying to find help locally for last two months. It is too much for folk to care. Just give easy answers on phone and nobody examines or does bloods.
Also finding it hard as folk often say it is not anything in their field, when it obviously is. I had this happen last autumn with something else.
As have UCDT diagnosis most folk telling me symptoms are a flare.
Now at least local hospital have taken my UCDT diagnosis on board. If they did not then they would have to look into Gad reaction.
Thanks for sharing you story Spotty. You have been through loads. Hope you can now rest up and that the steroid works quickly. Take care xx
Thank you SC for all that very interesting info. It sounds like you’ve been through the mill yourself! I’ll have to remember to add Nitrofurantoin to my allergy list too. My GP said it is well known to cause liver upsets and took me off it as soon as I was discharged from hospital. I’ve been on it for years as a prophylactic (for UTIs caused by my atrophying kidney) and swapped every 6 months with Cefalexin, and I have to say I have felt generally unwell (unexplained nausea, fatigue etc) for almost 2 years now. Hubby and I think it came to a head in early January due to a very upsetting and stressful situation we had just before Christmas followed by the rich food (but no alcohol) of the festivities. Then when in hospital they took me off my Hydroxychloroquine but kept me on the Nitrofurantoin!🤷🏼♀️ We think the beak from the Hydroxy, which was supposed to be giving my liver a rest, led to the Lupus flaring and reacting to the Nitro with this nasty rash.
Isn’t it weird how different professionals have different opinions. There’s you being told it is all a flare and my Rheumy telling me my Lupus wasn’t active and that the rash I had wasn’t Lupus related!! Yet Dermy straight away said it was a classic Lupus rash and started me off on this further 6 weeks of Prednisolone starting at 30mg and reducing by 5mg each week. How can a Rheumy not recognise the rash?? It has definitely shattered any confidence I had in him!
I hope your plan works quickly and well for you SC. My liver hasn’t returned to normal function yet but I’m feeling SO much better without the feeling of pressure under my ribs and extreme nausea from the liver.
I am interested that you mention a steroid card. What is that? Should I have one?
Take care and keep me posted how you get on. 🤗😘xxx
Thanks so much for that SC. Two of your replies appear to have been deleted. Did you do that or somebody else? Anyway, the above is most helpful thank you. Hubby is also going to try Dermy on Monday to see if she’ll provide the card. If not, we’ll follow download our own.
My lupus rash was similar to yours, it was my dermatologist that took one look at me and diagnosed me. She did send me for a biopsy as well. I saw a young Rheumy doctor who said the same when she saw my rash and said I really have to see my consultant. Strangely enough, my own consultant didn’t even look at my rash, she always concentrates on her own Rheumy things. I was also there with a swollen hand which she sent me to a physio to get treatment for tenosynovitis. She eventually had to give me steroids. The dermatologist gave me dermovate which you are using and elecon for the rash on my face. I was asked if I would let the photographer take pictures and he certainly did take a pic of the rash everywhere I had it. Unfortunately I don’t have any pics of mine as I deleted them from my phone. The dermovate did help me. Best wishes
What a time you had of it as well Lizard. It was also a dermatologist in Canada where we were on holiday in 2012 that diagnosed my Lupus rash. He also sent off a biopsy which confirmed his diagnosis. But isn’t it strange the Rheumatologists don’t seem to recognise the rash? 🤷🏼♀️ You’d have thought they’d have seen loads in their time. I haven’t come across Elecon but if the rash spreads from my hairline further onto my face and behind my ears as it is beginning to do, I’ll ask my GP about it. Thanks for your reply which is very helpful. I hope you are keeping as well as can be now.🤞 Take care. 🤗xx
Elecon is a steroid cream and unfortunately you can’t use it over a large area. It does thin the skin. I had to only use it for my face but there wasn’t too much on my face. It does work quickly though. My dermatologist gave me a prescription for 4 tubes of dermovate so I will always try and keep it under control. I also have to wear factor 50 and keep out the sun. I’ve got it under control, wee bits keep coming up on my shoulders and legs but I get the cream on quickly. My Rheumy is a stickler for bloods, if it’s not in the bloods I don’t have it. If the dermatologist hadn’t diagnosed me I wouldn’t know I had lupus. It’s taken 10 years to get to this point. I had MCTD so this is all related.
It sounds like you have your rash under control Lizard with keeping a constant eye open for it appearing anywhere and slapping some Dermavate on it immediately. I do that too since the enormous flare that led to my diagnosis in 2012 but this time it has caught me out and seems to be more aggressive than the 2 I’ve had since 2012. I think my Rheumy sounds like yours and because my bloods were much the same as usual he’s decided the rash can’t be Lupus related.🙄 Thank goodness for Dermatologists! Sorry to hear you’ve had such a long journey to reach this point of your diagnosis. I was ill off and on most of my life with ‘mystery illnesses and symptoms’ since I was 13 years old and only got the diagnosis of SLE after the rash when I was 57! Most of us Lupies seem to have to go on these long journeys to diagnosis but thank goodness we have each other here on the forum to reassure us we aren’t alone and we aren’t imagining it all! Thanks again for our replies. Take care Lizard. Xxxx
I got Tacrolimus ointment for my face, Spotty. Actually I’m trying to get more of it but the gp surgery won’t order it without seeing me first ( as it’s been more than six months) and they can’t see me as they’re only seeing emergencies because they’re short staffed! 🤷🏼♀️
Isn’t it awful Barbara? I think a lot of it is down to saving money too. Our surgery here keeps prescribing cheaper versions/brands of tried and tested drugs and lotions in order to save money. 😑 I hope that isnt’ the case with your Tacrolimus.🤞 And yes, seeing a doctor face to face is a rarity these days. At least mine insisted on seeing my rash and to give me an ECG but they are overworked due to being short-staffed and taking on 800 new patients from a practice that closed 3 miles away.🙄 I hope your surgery will prescribe it for you soon but if you have an appt with your Rheumy soon perhaps they would prescribe it or at least recommend your GP does? What a job trying to get round all these obstacles. Good luck Barbara. 🙏🏻🤞🍀 Take care. 🤗😘xx
hi, that looks like Urticaria which is an allergic reaction. I would suggest you get in touch with your GP surgery and ask to see a Nurse Practioner or GP or will be able to advise further. You can also email the photo to the surgery these days. Hope u feel better soon
Many thanks for your reply Sus.👍🏻 Yes, our nurse practioner and GP looked at it but because the antihistamines had no effect they concluded it was a Lupus rash especially when they compared it with the photos we had of it in 2012. But hopefully I’ll see the Dermatologist within the next few days so will see what they think. Thanks for your kind wishes. 🤗xx
Dearest Spotty, you certainly have had a really bad run of it recently. The rash looks horrible and I do hope it starts to settle soon. Have you got some old fashioned Calamine lotion to dab on it? Prescription strength anti-histamines could be helpful if you can tolerate them. How about a soft cloth soaked in cold camomile tea and lay that over your back for a while? Very gentle hugs to you right now 🤗🤗🤗💐🌸💐
Hello dear HW. 🤗 Thank you for your concern and your suggestions. 😘 I don’t have any Calamine lotion but a facecloth soaked in cold camomile tea tea sounds a good idea. 👍🏻 I was plastering myself in honey when I first had it in Canada 10 years ago but as we were in a hotel the sticky towels were changed regualrly and weren’t my problem.😁 I don’t fancy the mess now. But the camomile tea sounds well worht a try. Thank you. I am also drinking cool camomile tea with honey so hope it helps.🤞 I wish I had another sheet of the wee squares of cool gel that can be cooled in the fridge or frozen because they take the heat and itch away and allow me to sit up and use my iPad, knit or read, but it only lasts about an hour.☹️ But while it is cooling again I’ll give the camomile tea a go. I hope things are going ok for you just now.🙏🏻 Take care HW. 💕🤗🌷xxx
Hi, you poor thing that must be driving you mad. I have had two episodes of something very similar one in 2020 in the middle of Covid after taking Losartan blood pressure and Omeprazole. The GP actually came out to the house as I felt so ill with the rash and joint pain all over the place. This did eventually fade he said he was Erythema Multiform. As I say it did fade but took weeks and left me with hyperpigmentation where each of the spots had been had to use a lot of moisturising cream and E45 body wash. Unfortunately I then had a period of what the GP thought was post viral fatigue which lasted 2 months. Ive never felt so ill in my life. The second time it happened was August 2022 and it occured after I had an infection going on. That wasnt as bad as the first time and the rash cleared a bit quicker, but the joint pain was awful. First GP I saw said it was just hives but I disagreed with her. So I am on the trail of trying to find out what is going on as I seem to be getting what I call flares. I am currently using a cream called cerave as my skin is very dry and itchy. I have seen a Rheumatologist, but as you may see from previous posts, I was not impressed. I am currently trying to get referred to a different rheumatologist and dermatologist. I took photographs each time I had the rash, but the rheumatologist wasn't interested. The spots/rash seem to go from a little red spot and can spread out into large plaques and then go purple and fade to brown which hives definitely do not follow that pattern.
Thank you so much for sharing your experiences with me Labx. I am so sorry to hear what you went though and that you felt so ill generally with the joint pain etc on top of the rash. That must have been dreadful.
I just can’t understand Rheumy’s who aren’t interested in rashes. Luckily my former Rheumy was excellent and instantly recognised the Lupus rash from the first time I had it, and treated me immediately with Prednisolone and Dermavate. But the current one keeps saying this rash isn’t Lupus related which has worried me, because if not, then what is it? Especially as it is behaving in exactly the same way as previous Lupus rashes. I am on Omeprozole at present. Did it make your rash worse? I see from the information sheet that 1 in 100 people can react to Omeprozole with a rash, but of course I have to take it at present because of taking the steroids.
Mine progress from a tiny red spot to blotches as you described and as you can see in my photos attached to my reply to Barbara on this post. Definitely not Hives as you say. My skin is VERY dry too and I use Aqueouscream to wash with when I have the rash and Simple shower gel when I don’t.
I hope you discover what is causing your flares as I too have had flares which appear to be related to a particular drug, to a virus or even to a lot of stress. It is a minefield but one well worth investigating if it will help us avoid such flares in the future. They have no idea what triggered my liver into malfunctioning either.🤷🏼♀️ Again a virus or toxicity of Nitrofurantoin were suggested but they really don’t know.
A Naturopath once told me that with Lupus you can be intolerant of one thing one day eg dairy products, and then intolerant of gluten or something else another day. He said it is a condition that constantly changes in what it accepts and reacts against. Great eh?
Hoping you stay out of flare for a good long time now Labx.🤞 Take care.xxx
Bless you how frustrating and uncomfortable you must feel. I know its not, but its got the look of psoriasis. It must feel so itchy I really hope you get it solved and sorted soon. Even more frustrating when you want answers. Let's us know how you get on xx
Hi Lucy Lou, lovely to hear from you. Yes it is unbearably itchy most of the time but I’m managing to cope (just! 😄). I don’t know what psoriasis looks like but hopefully the Dermy will know what it is. 🤞 I’ll let you know what they say. How are you keeping these days? I hope you are as well as can be. Xxx
Oh Spotty 🤗🤗🤗gentle hugs to u 🤗🤗🤗You've been going through it for sure 😔Unfortunately I can relate/recognise the rash coz I've had something very similar n I totally know how much pain and stress the itching causes. It does look like a lupus rash. I'm wondering if you've had any meds which are unusual for you with your emergency treatments 🤔Just thinking of the reaction you had to Terba....can't spell it.😹
When this happens to me it's prednisolone that sorts me out..I usually go up to 20mg for a month or so n then reduce slowly. As u know I'm on Pred long term now . I use Dermol 500 lotion which helps with the itch..I get it on prescription. I take over the counter Piriton every 4-6 hours too which helps me. Thankfully now I'm on Methotrexate I just get it in little patches but I still have to be vigilant. I use Dermovate ointment and I'm wondering if that might be something to suggest..it lasts longer than the cream on the rash.
Drinking chamomile tea is a good move too.
Sending healing vibes to you Hen and hubby coz I'm sure he's helping you apply the cream as some places are just too hard to get to. 🤗💜🌈Xx
That looks horrid too Kat. 😫 Poor you. The only meds I’ve had extra to normal since the being in hospital are an anti-nausea drug (Odansentron I think it was called) plus Omeprozole. However my GP thought my prophylactic Nitrofurantoin had caused toxicity and said it was known for it so was surprised the hospital kept me on it but took me off the Hydroxychloroquine. 🤷🏼♀️ I’d had the rash for 2 weeks before starting the Prednisolone at 30mg for 5 days and tapering down by 10mg every 5 days. But I think the Lupus must have already got a hold by then which is why it is taking some time to slow down and hopefully eventually u-turn. I have the Dermavate ointment too from a previous flare so I tend to alternate it with the cream.
Thanks for your healing vibes Kat - we both appreciate it. Yes poor hubby is trying his best to keep me as comfy as possible. 👍🏻 Hoping you and your hubby are keeping ok at present and managing to get out and about a bit more now with your new car.🙏🏻
Even though Nutrofuranoin been added to my allergies list, GP said they might still prescribe it if nothing else to prescribe.
Discussion all on phone. Nothing being investigated. They just have hospital blood results now I have given them these as not imported to GP system.
Crazy world. Know other Strep B Agalacteria? sensitive antibiotics give me less issues, but they have their rules, and cost cutting to consider I guess.
I'm refusing to take Nitrofurantoin if prescribed again.
If Nitrofurantoin has been added to your allergies list you’ve every right to refuse taking it again. It sounds irresponsible to suggest you should! My GP has told me flat I’d never be allowed to use it again. Trouble is I’m running out of options as I have a resistance to Penicillin based antibiotics, have an allergy to Trimethoprim, Septrin, and now Nitrofurantoin. What next? 🤷🏼♀️ I’m still taking Cefalexin but once I’m due to change it for another prophylactic in 5 months time what then? Take care. Xx
My back is itching like mad at the moment so you have my sympathy. I can’t see anything showing in the mirror so far. Yours looks dreadful though. I may be wrong, I often am, but it looks as though the areas that would be covered by your bra are not showing the rash. But I can’t think of any sensible reason why that would be. I hope you get to see a dermatologist very quickly. I’m seeing my rheumatologist tomorrow and I’ll be getting him to check my back! Xx
Good idea to get your Rheumy to check your back tomorrow Jumper. Better to be safe …. Many thanks for your kind wishes. I hope your appt goes well tomorrow. 🤞 xxxx
My sympathies and heart go out to you regarding your rash, it must be so uncomfortable and these things really drag one down. I started having a strange red rash on one shin last August during the heat wave and put it down to that at the time. I was prescribed cortisone cream for it and by November it just went. However, since January this year all hell broke out with a very similar looking rash yours, several all at once (including the original spot from last August) on the tops of each foot near where the arch begins, to the side of the right ankle, random patches which started as separate spots but then joined up in some places, on each shin up to the knees, then new random ones on each lower arm and now just below the belly button. Went to the GP 8 weeks ago - he maintains it is a fungal skin rash i.e. ringworm (no actual worms involved in case you have not heard of it) - it is a fungal based rash which can be linked (having extensively googled this beastly thing) to a compromised immune system e.g. Lupus, actually named. Was prescribed Lotriderm cream for 2 weeks - no effect whatsoever. In the meantime the irritation and number of spots multiplied. Was then put on 2 week course of Terbinafine antibiotics and Terbinafine topical cream. The 2 week course of antibiotics made me feel really ill and I have not really felt well since. (It is recommended if one has Lupus not meant to take this antibiotic and it can also cause liver damage in some cases. GP was aware of the potential liver problems but said it "should be okay" but was totally unconcerned about the lupus). As the Terbinafine did not work at all (the itching was a little subdued) he gave me an urgent referral to the dermatologist (was referred mid February the earliest appointment is 15 May!) Hey ho. Not sure if this rash thing is related to Lupus or not. My rash may be something completely different but looks very much like yours - red roundish shapes, they spread to then join up in some places and go very dark red if in contact with water/become wet i.e. when showering. I how shower in cooler water, not hot water which is apparently not wise but the rash afterwards looks even worse and very dark red. In between the skin becomes flaky and even more itchy then all goes back to being just red. The worst is the irritation which at times borders on painful. GP advises to continue with the Terbinafine 1% topical cream until I see the dermatologist. Not very happy about this to be honest as the info sheet says to use for only 2 weeks at a time - not virtually 3 months non stop. In any case it is not doing anything much. So am instead am trying a holistic approach i.e. Tee Tree Oil cream (on Amazon and which has had good reviews for rashes) which has improved the irritation somewhat but so far the spots remain but not increased in size. I gather it can take a good while to work (sadly I am not a very patient person so need to learn that quality in life). Am changing my diet too i.e. gluten and lactose free and no nightshade foods e.g. potatoes (other than sweet potatoes), tomatoes. A visit to the rheumatologist has not been suggested as the GP is so convinced it is a fungal infection. I disagree but he is not prepared to try anything else in the meantime. However, I also had my annual thyroid blood tests done 3 weeks ago and my thyroid is all over the place - results indicated an overactive thyroid so my medication for that has been reduced (I have been on Levothyroxine for about 9 years now). From research I found that a rash which seems to have similar characteristics can also be a sign of thyroid problems. Don't know if this is the case for me as it takes a while for the medication adjustments to settle in - not feeling too great on that either. Am due for monitoring blood tests not until mid May. What is so frustrating is the time it takes to either get an appointment in the first place, and then the time needed for various treatments to work/not work and back to square on but having to live with this dreadful rash etc. Any sort of irritant/rash on the skin is really hard to cope with and gets on your nerves literally. Am now on the point of cashing in savings to refer myself to a private dermatologist as I can't wait any longer. In the meantime, I wish you good luck and I really hope your situation improves. I will let you know the outcome. Take care.
Hello Purplebox, I am so sorry to hear what you’ve been going through. When something goes on for as long as our AI conditions do, with all their various symptoms and side issues, it really does bring you down. I’ve had 10 months of one thing after another. So demoralising.
Terbinafine is not an antibiotic by the way, it is an anti-fungal drug and is the very one that started my horrendous rash back in 2012. The only advantage of it to me was it led to my diagnosis of SLE. So I would seriously consider whether to continue with it if I were you, especially as you don’t think it is doing anything for you. I was also mis-diagnosed with ringworm by a young in-experienced GP during another flare in more recent years, but as soon as I sent a photo of the rash to my then Rheumy she immediately recognised it as a Lupus rash and started the Prednisolone and Dermavate routine which stopped it in its tracks.
Tea tree oil is a good natural remedy for fungal problems but depending on the severity of the infection it can work quite quickly or take a long time to work with a chronic condition.
With your thyroid issues perhaps influencing things too, it sounds like you need to see a dermatologist who should recognise exactly what the rash is and what issue or combination of issues is causing it. If your GP isn’t referring you to a Dermatologist would it be worth going to A&E or even speaking with somebody on 111 for advice? Rather than use all your savings to see one privately I’d try every other avenue first.
Thank you for your kind wishes and I wish you all the best too with your on-going problem. Please do be careful with Terbinafine. For some people like me it is poison. Let me know how you get on. With best wishes and hugs 🤗xxx
Thank you so much for your reply and I hope that things are improving for you. I have stopped the Terbinafine a couple of weeks ago as instinct won over and is never to be ignored. Thank you for your recommendations and I will let you know the outcome. Another new development are continual chest flutterings/palpitations for a couple of days now. I already had one episode albeit briefly back in August and hot footed it to the GP. Pulse was erratic (the nurse was more concerned but it was disregarded by the GP at the time), ECG was done and was normal, blood tests later revealed low potassium levels. I was sent home and told to rest and stay hydrated after being subjected to a 10 minute question session by the GP, firing (albeit pleasantly but with her head tilted on one side - that she did not actually pat me on the head was everything) a lot of questions about my living circumstances. I felt very uneasy during this as it was similar to some of the pre dementia questions my late mother was asked so I am a bit wary of this sort of "caring" questioning - sorry I am rambling. I am 68 this year but definitely not a neurotic doddery old woman (just yet) and believe I have all of my marbles. So now its back to the GP, although I have been allocated to a new one so there is hope - to start again regarding these ongoing palpitations. Thanks for your patience in reading all this. All the very best. xxx
I‘m pleased to hear you stopped the Terbinafine a while ago including the cream. I get those fluttering/palpitations too. I wonder what it can be? Of course unless an ECG is done during such an episode it isn’t going to pick it up but at least it showed all is normal when not experiencing these flutters.👍🏻
I am 68 this year too (July) so fully understand what you mean by some questions, and methods of questioning, suggesting we are thought of as being doddery old ladies.
Wishing you the best of luck with your new GP. Please keep in touch and let me know how you get on. We oldies have to stick together.🤣
Sorry life is challenging and difficult at the mo but yr rash bought to mind an experience I personally had in 2018. I was 55 years old at the time. My local university hospital saved my life. I am not clinically qualified but I can tell you of my experience. I have some allergies to meds and rash started off very similar to yours. GP did his best but rash was too specialist. Rash developed over a few months then escalated. Eventually covered 80% of my body, with egg sized blisters everywhere. Typical butterfly rash on face. At that point I hadnt even heard of lupus! Blisters burst, skin coming off in sheets was in immense pain. Went to A & E, ITU for a week, specialist burns unit for many many weeks, then standard ward for many weeks. Tbh the photos I have are graphic. Wouldn’t want to frighten anyone. I was diagnosed with lupus. The dermatologist assigned to me saved my life. He worked v closely with rheumatology. I had a fantastic, wonderful compassionate caring efficient service from our NHS. Please please do not be frightened to go to A&E if it escalates. They are there to help. I wouldn’t want anyone to go through what I did. Now , my lupus is under control and I am living a very positive, sporty good quality of life. Please private message me if you would like to talk. Best wishes
Oh my goodness Smudge what a horrible ordeal you went through. 😫 I am so sorry to hear that. Thank goodness your fantastic dermatologist with the support of rheumatology and the NHS team saved your life and offered such a compassionate service. I’ll be eternally grateful to the wonderful dermatologist I had in Vancouver Island too who was so compassionate and supportive and suspected Lupus, with my then rash which was a result of Terbinafine. His suspicions were supported by a biopsy he did but he couldn’t do the definitive test as we were returning to UK too soon for the result. But he prescribed steroids and Dermavate which helped but it took another course of steroids back home and the help of another dermatologist to settle it all down. I’m certain in my own mind that this current rash is Lupus as it is following the exact same path as the one in 2012 and the 2 more minor ones since then. But as my current Rheumy is convinced it is NOT Lupus-related I have been referred to a dermatologist and am awaiting an appt.
It is heart-warming to hear that you are leading a positive and sporty life now after your life-threatening ordeal. I’ve been quite fit up until about a year ago when one ailment after another has prevented me from doing many activities I enjoyed including Yoga, Pilates, dancing and long distance walking. So frustrating.
I hope you continue to lead an active and positive life and NEVER experience anything remotely like what you went through in 2018.🙏🏻 Many thanks for your support and offer to talk. I really appreciate that. I’ll let you know how it goes with the Dermy. Take care and very best wishes. 🤗xx
Have you tried Eurax cream for the itchiness? It lasts for upto 10 hours and stops itchiness very quickly. Check with your doctor or local pharmacist. Sorry that you are having all these health issues and hoping you get the answers that you need so desperately Xxx
Thank you so much Sashappy. I’ve noted Eurax cream and will mention it to my GP and/or pharmacist. Thankfully the itch is beginning to slowly subside now and the rash is beginning to fade in most areas thank goodness. But I’ll see if I can get some of the Eurax cream in just in case the itch returns. Thanks again and for your very kind wishes.
Hi spotty-ewe I had this rash years many years ago when I was working on the hospital wards I went down to rheumy clinic and referred me to dermatology who saw me within the week ,just incase it was something I had caught on the ward but biopsy showed it to be lupus I know I had creams but cannot remember what. good luck xxx
Thank you for your good wishes Daniel. Dermy has confirmed it is a classic Lupus rash (despite what Rheumy said) so I’m now on another 6 weeks of steroids and still using Dermavate. Thanks for sharing your story with me. It must have been quite scary for you until it was diagnosed - I know mine was. Take care. Xxxx
How lovely of you and Prince Tiggy to think of me.🥰 Thank you both. I’m much better now thanks Tiggy with the itch gone and the rash receding and slowly fading. I’m feeling totally exhausted however and my old friend fatigue is here to keep me company. 🙄 But I did drag myself out for a walk with my hubby just before lunch and enjoyed seeing and chatting with folk walking their dogs. 😁 Give Prince Tiggy a cuddle from me and a wee kiss if he’ll accept it. 😘 I still miss my beloved cats and dog I had in my younger days and the affection they always offered.🥰 Have a lovely weekend both of you. Thanks again for thinking of me. 🤗😘xxx
that’s sooo good you went for a walk as I do think although we have to drag ourselves out we do feel mentally brighter for it . Blooming fatigue can go and do one ☝️ 🥊. I’m so glad the itch is getting better as I think the itching is so horrible and ruins everything as you can’t even focus to eat . Let’s hope things never ever get to that point again .
Prince Tiggy is being very naughty sitting on the tea towel under the cooker hood 😂. Only because daddy is out wouldn’t dream of it with him here 😂😂xx
Ps he always likes a little stroke so I’ll pass on one . You take good care xx
Yes, the walk was lovely especailly through the woods where the birdsong was so uplifting. Fatigue is sticking with me but the itch got bored and took a hike. If the Rheumy had recognised the Lupus rash it wouldn’t have got this bad this time. My old Rheumy was so much more switched on and recognised it immediately whenever it started and started me on the steroids and Dermavate straight away.
It made me smile thinking of Tiggy being naughty when his daddy was out. They are so funny aren’t they?
I love the woods there’s just something so calming about the birds and the trees 🌳. Cats are so funny as they do have attitude .. tiggy has been in sympathy for you spotty as he got awful granulomas on his face and lost all his fur . He’s back on the steroids now and it’s growing back . We could write a book 📕 between us on this forum couldnt we ! You take good care xx
Aww, poor Tiggy. Sorry to hear he’s been through it too but glad his fur is growing back.👍🏻 My hair has been falling out during this flare, so hopefully it will grow back too. 🙏🏻 Love the idea of a book. 👍🏻 Hugs 🤗 xx
sorry to have missed this but three funerals and now a peptic ulcer issue has kept me away from the iPad but glad you got a diagnosis on the rash and hope you are feeling better 🤗
I’m so sorry to hear of your spate of funerals Stills and offer my sincere sympathy. I just heard today from a former pupil that her lovely Mum died from MND which she was diagnosed with only 1 year ago. My circle of friends is dwindling dramatically with each passing year. The joys of aging. Sorry to hear of your peptic ulcer causing a problem too. I hope you are feeling better soon.🙏🏻
The itch of my rash has eased off now thankfully and is slowly fading. But I am feeling exhausted and still have 5 more days on 25 mg of Prednisolone followed by another 4 weeks of tapering off by 5mg per week. If that doesn’t slap the Lupus down I don’t know what will. 😉
Thanks for asking after me when you are going through so much yourself Stills. I hope the week ahead is a much better one for you. Take care. 🤗😘xx
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