I’m new here.

[Haired]

Hi I have skin Skin Lupus for 3 yrs now without remission. I have tried lots of medications without success. On Methotexrate for 7 months now with lots of side effects. Fatigue, nausea and brain fog are hardest to handle. I also have Sjogrens and take Mepacrine which help with symptoms. Anyone with both Lupus & Sjogrens and how to manage both medications. I would like to return to work but with brain fog and memory loss it is not possible just now. Thank you.

[svfarmer]

Hi and welcome to the group - sorry I can’t help you as I’ve got the other kind of lupus but sure someone on here will be able to help

Best wishes x

[Haired in reply to svfarmer]

👍

[Jmiller623]

Well Haired! Nice to have you join this wonderful group.

I am not on MTX. Wish I could be of more help which should be along shortly! ❤️

[Haired in reply to Jmiller623]

👍

[Barbara17]

Hello, Haired, and welcome. I also have scle and Sjögren’s, as have a lot of people on this site so you will find a lot of help and support here. I think the best part is knowing you’re not the only one suffering. I think we’re all on different combinations of a few medications and it’s just finding the right combo to help you as lupus is a crafty beast and shows differently in everyone. In my case hydroxychloroquine seems to help most and the Zentiva brand seems to be the only one I can tolerate, for bad skin flares I also use Dermovate ointment, during a really bad flare prednisolone calms inflammation quickly and the best advice I can give you is to stay out of the sun at all times. Also find a gp who understand lupus as, unfortunately, not many of them do. Do you have regular appointments with a dermatologist? Support if often patchy and depends where you live. Are you in the UK?

Good luck and stay in touch.

[Haired in reply to Barbara17]

Hi Barbare 17, Thank you for reply. I am in Dublin and have not managed to speak to anyone about the Lupus and Sjogrens. Not sure if you can see replies to other members ? I have a lot of details in reply to Krazykat 26

Do have a Dermatologist looking after the Lupus . Here in Ireland takes over 6 months to get apt with Dermatologist!! Could not tolerate the HydroxyChloroquine. I am finding side effects of Methotrexate difficult. Do you know anyone onMTX who is back in work ? Consultant not happy for me to go back yet. Finding it difficult miss work. Haired.

[Barbara17 in reply to Haired]

I was on mtx earlier this year but dermatologist took me off as she thought I was having a bad reaction to it. In hindsight I now think the reaction was due to stopping hydroxychloroquine. There are several brands of hydroxy and the one best tolerated is Zentiva which I am almost sure is available in Dublin. I’m in Scotland and all prescription medications are free, thank goodness. That is quite an expense you have every month! I was retired by the time I had an scle diagnosis but I have had Sjögren’s for more than 20 years and I worked until I was 61. I took various painkillers and amitriptyline however since starting hydroxy I don’t need the amitriptyline. Every cloud...😂.

I’m so sorry to hear you have had a stroke too. You’ve had a lot to contend with recently and I hope you find the medication combination to keep everything under control.

[Haired in reply to Barbara17]

Thanks for al. The information. Haired

[Krazykat26]

Hi Haired 🤗 welcome to the group 💐 I have cutaneous lupus n suspected sjogrens although I'm not on any treatment for the sjogrens.

I do take methotrexate but I'm also on other meds..what other meds have u tried? With my particular form of lupus I'm having to have combined treatment so I'm currently taking 15mgs MTX, 300mgs hydroxychloroquine n 8mgs of prednisolone..this combo seems to be helping the most at the moment!!

I take MTX orally n don't have any nausea but if it's a problem for u maybe u could ask for the injectable form therefore bypassing the gastric tract?

I was diagnosed with SCLE 3 years ago too n I can honestly say that's it's only been since Xmas 2019 that I have felt any improvement n I do believe the methotrexate is helping me!

Take care

Kat 🌈😽😽xx

[Haired in reply to Krazykat26]

Hi Krasykat26, thank you for reply. A PPI caused the Lupus.I attend a Dermatilogist and she is looking after the Lupus. I am very medication intolerant She spent from 2017 trying different meds without success. 2019 spent 10 months on and off steroids but rash just got worse when I reduced steroids. Within a month of starting Methotexrate 15mg skin started to clear .skin now clear still have the heat at night. When last saw Dermatilogist she mentioned Injection if still not handling medication. She referred me to Rheumatologist who diagnosed Sjogrens. The mepacrine worked very well with fatigue and Mouth ulcer. But I’m finding the MTX very difficult to take as I sometimes Loose 2 days a week where I am exhausted, nausea and terrible brain fog, memory terrible and disturbed sleep.

Ihad a stroke end Jan just before Covid lockdown here in Ireland so that could also be making things worse. They were testing for Lupus connection but do not think related. I am one of the lucky ones can walk, talk and move arm again 👍. Main thing are symptoms of MTX dermatologist does not want to stop it as skin is so good now.

Good to talk to people who understand lupus & Sjogrens. Sorry for long reply. Haired

[Wendy39]

Hello Haired

I have lupus and sjogren's, raynaud's etc. Diagnosed in 2013. A lot of us here have overlapping conditions.

I take 400mg hydroxychloroquine, 2g MMF, two antihistamines, 50mg mepacrine (for 3 years), ranitidine and 30mg amitriptyline a day.

Do you think the mepacrine is helping your skin?

It was added to my mix of medication to help treat a rash I have at the nape of my neck - biopsy showed active lupus. However, despite taking this for 3 years now, I still have the rash.

I am wondering whether to keep on taking it, as after 3 years, it hasn't done the trick.

Best wishes

Wendy

[Haired in reply to Wendy39]

Hi Wendy 39, thanks for your reply. Wow you have a lot of meds to take .are they hard on your stomach? After I had the Stroke in Jan Prof Duffy my Rheumatologist said to stop taking mepacrine 100mg as I was now taking other meds for Stroke. But within 2 weeks I had really bad mouth ulcers back so put me back on Mepacrine. I did not realise you can get Ulcers with MTX Until later. Few months later got chronic Ulcers could hardly swallow Dermatilogist had to give me Steroid tablets you dissolve and swallow . She said Ulcers not common side effects of MTX !!! maybe not Sjogrens or possibly MTX causing it. Do you have to pay for mepacrine in UK? It costs me €50 for 30 tablets here ! This month went to get it and price went up to €280 for 50 tablets. Chemist contacted Health Dept here and arranged I pay €112 they pay the rest. You can see why need to get back to work. I blame Trump and his talk about Malaria medication !! Have you tried MTX ?

Regards Haired

[Wendy39 in reply to Haired]

Hello

No, we're lucky, NHS pay for my mepacrine.

Mouth ulcers can be caused by lupus itself. So it may not be the methotrexate.

Are you sure that your diagnosis of discoid lupus is correct? Or do you think you may have systemic lupus?

Brain fog etc, mouth ulcers, may be more systemic.

Take a look at the LUPUS UK website and publications for more information.

I am going to be adding methotrexate into my mix soon, I hope. I have it at home ready. Just didn't want to be going to the GP's surgery for weekly blood tests when starting this, during a pandemic.

I am hoping that it will help more with some skin issues and also with my arthritis.

Best wishes

Wendy

lupusuk.org.uk/

lupusuk.org.uk/publications/

[Barbara17 in reply to Wendy39]

Hello, Wendy. I have had a rash on the nape of my neck for as long as I can remember. My mum said it was a birthmark! It never really goes but sometimes it does improve. It’s not itchy, as some of the scle sores can be,

[Wendy39 in reply to Barbara17]

Hello

Mine definitely isn't SCLE and I wasn't born with it.

I've had it biopsied.

It's active lupus.

It tested positive for Complement 3.

The first NHS dermy I saw after my diagnosis, told me it was a red herring, a reaction to hair dye and nothing to do with my lupus. She kicked me off the dermy list. It turned out it was her last day in work and she was clearing the decks. I had to fight to get onto another dermy's list much later, when I realised that had happened. Now my NHS Dermy is a GP with a specialist interest in skin. She's lovely but no clue about lupus. So planning on getting a few dermy questions sorted out with a private appointment.

Have you ever got your biopsied?

It may be more relevant than you realise?

Wendy x

[Barbara17 in reply to Wendy39]

Thanks for this, Wendy. I’ve had the mark forever so I don’t think about it but I will put it on my list for my next dermie appointment due at the beginning of October. (Hopefully face to face)

Hope you get some help with all your present problems.

B x 💐

[Wendy39 in reply to Barbara17]

Thank you. Hopefully, we all help eachother, especially with discussing all of these little details that are often dismissed as irrelevant but then later often turn out to be anything but......Good luck. Let me know how you get on.

Wendy x