Discoid Lupus itchy scalp more bald patches what to do to ease it?

[carorueil]

After a biopsy in 2021 which confirmed lupus (scalp) I was prescribed Plaquenil (hydroxychloroquine sulfate). Having a long history of being prescribed very strong drugs here in France and becoming unwell from them I didn't take the treatment and finally got to see my normal dermatologist. She prescribed topical treatment for the scalp (diprosone and a stronger one later). As she retired she sent me to a 'specialist' dermatologist - his replacement (he seems to be very busy/disorganised) has been dealing with me for the last 18 months. She agreed with current treatment and I have now been doing a full blood test every year to ensure that the lupus hasn't spread to the rest of my body. All results are negative. I was meant to have my 6 monthly appointment with the dermatologist today but they rescheduled to 30/9 when I won't be in the country.. I've noticed that my scalp is getting itchier and itchier: the former red spots (which I treated with the topical drops) are now white and bald/bare. I feel that there are more bald /itchy patches now at the hairline near my neck (up to now it's been mostly top of scalp). Given my complicated medical history and reaction to a lot of meds (including antibiotics) I'd be grateful if someone could suggest what I can use to stop the itching? I'm guessing the bald spots are not going to disappear... thanks for any advice . Regarding the dermatologist if I get no reply I'll got see one I know whilst in Spain (where they advised me to keep things simple seeing as I have such a reactive body to drugs). thanks for any recommendations - I've avoided using the shampoo which I was prescribed because at the best of times I've sensitive skin and didn't want to aggravate things.

[Suvi8901]

I find relatively, cheap and safe Cetirizine off the counter medication helps with my general itchiness.

It’s an antihistamine but does help with itchiness and runny noses (allergic rhinitis) associated with pollen, dust mite allergies, hives etc:

nhs.uk/medicines/cetirizine/

[carorueil in reply to Suvi8901]

Thanks Suvi8901 apologies for delay in getting back to you - laptop went a bit crazy. I also tend to get massacred by insect bites long before this diagnosis.. I'm seeing a dermatologist this Thursday so will see what he suggests, at the moment I seem to have some weird insect bites so best to get it all checked out in one go. My allergist gave me some antihistamines for 'emergencies' as I tend to have reactions to a lot of drugs! thanks!

[SjogrensinTexas]

I am sorry you are still battling. I would consider seeing a rheumatologist as you are battling an autoimmune disorder not just treating skin challenges. This is systemic. I take Plaquenil and it help. It is an autoimmune regulator. You should incorporate an ophthalmologist into your doc rotation if you go on that drug as well. It has improved my quality of life and well worth the effort in my humble opinion. I also take Lo dose Naltrexone. And that alleviates a ton of the discomfort. Ask your doctor, my doc has it compounded for me at the pharmacy. Good Luck!

[carorueil in reply to SjogrensinTexas]

Thanks SjogrensinTexas, i saw my rhumatologist a few months ago - he doesn't feel he needs to see me for my Lupus! I've done all the full blood tests as don't want to go onto Plaquenil (french doctors tend to prescribe quite strong doses for everything) and dermatologist agrees with this. For the moment I'm just treating the scalp with topical steroid solutions. As I have other auto-immune disorders I'm trying to keep things simple. thanks!

[ARuko]

Hello Carorueil. Hope you’re ok. I’m taking Plaquenil, too, since June 20223 and it was prescribed to me for Lupus as well. However, my Lupus it’s affecting my body more than my scalp. To be honest, I had some side effects in the first month I used Plaquenil. Then, my rheumatologist asked me to stop taking it for 3 wks. I have started to take it back for a month, now. Side effects are very mild this time. I have lots of stomach issues, too, and I usually don’t take medicines unless I am extremely bad. I’m still waiting for positive effects from it, but at least the negative ones are milder. They told me that, because it’s a light one, it takes longer for the good effects to affect your body. I deeply hope this could help you. Not medicine related, have you tried “Neutrogena T/Gel”? It’s a therapeutic shampoo.. it’s quite good. Perhaps it could give you a bit of relief from itchiness.

[carorueil in reply to ARuko]

Thanks ARuko - as I tend to have reactions to most drugs I've managed so far to avoid Plaquenil! Both French & Spanish dermatologists seem to agree with this for the moment as lupus is so far only on the scalp and organs not affected (do complete blood/urine tests every year). I tend to have a dodgy stomach and that plus my reactions to most drugs made me reluctant to start on Plaquenil. A very long time ago (long before I had any health issues) I tried Neutrogena T/Gel and it irritated my scalp 😂 - always had sensitive skin so doubt would be even worse now!! I've avoided using the 'special' shampoo prescribed too as I'm just so sensitive to things: currently in Spain where dermatologist here knows how sensitive I am so will see what he suggests (when he saw my reaction to an antibiotic cream in April he even suggested that I avoid antihistamines!) thanks!

[RachelD1972]

Hi, I’ve got DLE too along with RA which is my primary issue. The DLE has never been controlled well and I think part of the problem is we cannot actually see properly what is on the scalp to treat it ourselves. I’m using Dermovate scalp ointment (steroid) Eucerin calming scalp ointment (they also do a shampoo) and Percy and Reed scalp shampoo. I couldn’t get on with hydroxychloroquine or Mepacrine and have just started mycophenolate. Yet to see an improvement. Dermatology can inject a lesion with steroid which is very effective. If the patches are starting to scar I would be going back to a dermatologist asap. Mine has always said they aim to prevent scarring and permanent hair loss. It does sound like they need to find something you can tolerate to take to keep it under control. Good luck, it is a tricky one x

[carorueil in reply to RachelD1972]

Thanks RachelD1972 my husband has the dubious task of 'inspecting' my scalp! My appointment with my French dermato was changed at last moment so now will have to wait 10 months rather than the 6 months planned (wasn't impressed). I use diprosone and dermoval (which sounds like your Dermovate). I tend to only use the Dermoval when I've red spots... I do feel that there are more white bald spots than a year ago... will see what Spanish dermato says: he knows how I react to everything. I saw a Spanish trichologist about 2 years ago and he told me that once you've got lupus DLE the hair is gone... He unlike the French dermato had a scanner which looked at my scalp. Not too sure if it's worth going back to get him to look again - though he prescribed another drug that can cause cancer so I passed on that one! (it wasn't steroids) I might check out the Eucerin calming ointment & shampoo. I agree it's difficult - not aided by fact that my 6 month appointment in France was switched to 10 months. I will be interested to see what the Spanish dermato suggests as otherwise will have to wait til January to see my French one.. It's often a balancing act between risk assessment of side effects and benefits - definitely tricky! thanks!

[RachelD1972 in reply to carorueil]

I’m sorry you are getting the run around. Dermatology pretty much said “fill your boots” with the Dermovate scalp ointment, they felt the scalp could take the stronger steroid. My teen niece checks mine and names the patches haha. I have had it cut short to try and cope with it better and I’ve been lucky that my hair has grown back when I’ve had bald spots. Expecting my luck to run out eventually. It seems to be really difficult to treat it. Re; the cancer risks, most immune suppressants carry these risks and personally I feel I have to balance risk with quality of life. Bloods are checked like clockwork to flag up any issues. I now have my first angry lesion on my body in an area that doesn’t see the sun. It’s always affected my face/scalp.

Hope you get things under control soon. Come back to us if you get any new tips! x

[carorueil in reply to RachelD1972]

Thanks RachelD1972 - interesting the difference between dermatologists there and in France!! Funny you mention lesion - I've jus had what looks like insect bites on my thigh - happened overnight and then got worse in Spain (like you body area not exposed to sun, wear UPF 50 hat and SPF50 all over). Thank God seeing Spanish dermato this week to see what this rash is - looks like insect bites - but never had so many! (This only happened after I used body lotion before going to bed so weird). Like you I have been in the risk vs quality of life for the best part of 30 years (first with endometriosis,much later hashimotos and now this). Also formally diagnosed with osteoporosis so trying valiantly NOT to take those drugs! Will keep you posted if I learn any tips- so far my experience with Spanish specialists is that they are aware that not 'one size fits all' are aware of the risks and more importantly listen to patients concerns... that already makes a bit difference, now if only our body would stop attacking us 🙏

[Turquoise-1]

Hi carorueil

I too suffer with a very itchy scalp, have red sores which develop into blisters, taut, sore scalp, thinning hair & alopecia.

Dermovate Scalp Treatment helps to ease the itchiness & soreness for me too as @RachelD1972 has said. It gives me relief but as soon as I don’t use it, it’s as bad as ever.

It has made my hair ever so slightly thicker & encouraged regrowth of the bald patches. Rheumatology prescribed it for me as like you I have sensitivity & adverse reactions to many Lupus meds.

It’s extremely easy to apply as it’s a liquid which comes in a small, tapered bottle. I drip it onto my scalp in various places, tilt my head in all directions to help it run all over my scalp.

I’ve been advised to use it sparingly as it is a strong steroid, (I had Anaphylaxis following a Steroid injection + adversely reacted to Prednisolone tablets), so I use it 3 x weekly.

I couldn’t tolerate Hydroxychloroquine at all & had an awful reaction to it - I will never take the awful stuff again.

Dermatology gave me Dermax shampoo but it doesn’t help my scalp problems at all, just makes my hair really dry. They also gave me Solaraze 3% Diclofenac sodium gel for the Acintic Keratosis I have but this is impossible to use being a gel in a tube with no applicator. I’d have to shave my short hair to apply it as being a gel it smears over my hair!

I avoid any of the shampoos & skin products that claim to be ‘sensitive’ as I find they aggravate…. Baby shampoo is safe for me. I even tried diluted, organic Lavender essential oil in a spray bottle in a bid to get relief, but it didn’t work…I did smell nice though!

Dermatologist prescribed me a antihistamine called Fexofenadine which was totally ineffective….seems it’s all trial & error.

All the best to you 🙂

[carorueil in reply to Turquoise-1]

Thanks Turquoise-1 - you sound like your body reacts like mine! My former French dermato (she retired) prescribed Dermoval (thinkit's the same as Dermovate) and said it was stronger than Diprosone. Was told to use it twice a week at last appointment (over months ago) I have been avoiding it's 'sister' shampoo having read the side effects and knowing my body (and the fact that it isn't a French one so overreacts to a lot of stuff considered normal here). Because Dermoval is stronger I've only been using it when the scalp spots were pink/red - otherwise I've been using diprosone. At the moment I'm just using my 'normal' shampoo - Klorane and an Italian one I found.. As we live in a hard water region (even with a water softener) I need something to be able to wash my hair. I've tried some sensitive ones too - think a Danish brand but didn't work with either my hair or the water! Unfortunately I can't bear the smell of lavender oil and I know that tea-tree oil is way too strong for my skin in general never mind my scalp. I think unfortunately with a lot of auto-immune diseases there isn't one size fits all - even though specialists would like to think that's the case! It would make our lives SO much easier if that was the case! Best wishes !

[Turquoise-1 in reply to carorueil]

carorueil

Hard water where I live too, I’m forever descaling my kettle with white vinegar.

I also have something called Dermol 500 lotion which is anti microbial emollient/moisturiser that can be used as a soap substitute. I use it as a body moisturiser along with Balneum Cream for my very dry skin.

It’s available on prescription but can also be purchased.

It was really good for washing with when I swam regularly but I like to use it as a facial for cleanser anyway.

I discovered it works fine as a shampoo too & certainly doesn’t aggravate my scalp - it makes the shower very slippery though….

Hope you find something to suit you 🙂

[Angel767]

I have the same problem. My scalp drives me crazy! I use a liquid Clobetasole on my scalp, it really takes the itch away.