Scalp SLE diagnosed April 2021, conflicting/contradictory medications - any advice?

[carorueil]

Hi I've had a biopsy which confirmed SLE for scalp last year in France (where I live).Having suffered health issues due to serious overmedication here before, I was reluctant to start on 400mg of Plaquenil.

Got a 2nd opinion in Spain in May2021, who prescribed Diprosone (topical steroid cream) which I'd used before.Normal dermato confirmed Spanish dermato's prescription who felt it wasn't strong enough to 'control' things so prescribed stronger topical steroid cream (clobestasol). Have been using that since October last year til July this year when I returned to Spain.

Regular dermatologist retired and sent me to 'specialist' dermatologist who prescribes same stuff (no photos, minimum examination, young and seems disinterested).In July prescribed clobestsol gel again twice a week, clobestasol shampoo once a week and minixodil 5% twice a day: all for 6 months. Having had experience of heavy medication by French specialists, I just got 2% minoxidil from pharmacy.

Returned to Spain for holidays and saw trichologist: initially wasn't convinced I had either lupus or alopecia until he did the physical exam on scalp as blood tests (done twice in April 2021 and July 2022) aren't always conclusive. I've never had any 'flare ups' so not too sure if you are meant to be continuously on topical cream?? (My gut is saying only when needed). When heatwave in Spain didn't use anything (Spanish trichologist ok with is).

Trichologists final analysis was that I had scalp lupus, prescribed the following: Elidel cream 2-3 times a week/ Clobex (clobesterol ) shampoo once a week, with a review in 3-6 months. I've seen 5 dermatologists (one replacing another retired), and still not sure what I should be doing? I'd been covering my head/scalp with hat for the last 18 months but trichologist said that's not necessary unless strong sunshine from noon etc. Having done research on Elidel feel VERY reluctant to start it... After 6 weeks of taking nothing there are two pink spots on my scalp (hubby took photos this morning), so now I'm thinking of going back on the diprosone gel (bethamesone) to see whether the pink spots diminish, and will review in 2 weeks and if not will go back on the stronger steroid gel.

To complicate matters I have Hashimotos's and was prescribed 5mg prednisolone (wrongly) for 5 years so my immune system is already not optimal. I was just wondering what other patients have done? From what my French dermatologist confirmed in July and trichologist confirmed in August, I am 'stable', I've never had 'flare ups' so not too sure how to balance what to do? Any advice would be welcome - sorry for the long story! (I have blood test results if they are useful to post). thanks Caroline

[MrsMarigold]

hello. Welcome to forum. A lot of information you offered but it’s a bit confusing to me. I had a biopsy of my scalp and it also confirmed lupus SLE. However the way you seem to be describing it is that lupus SLE is only affecting your scalp; or lupus SLE is a disease unto itself on the scalp. Lupus SLE is a systemic disease affecting entire body. I can hardly believe you were told you do not need to wear a hat. Lupus is a condition in which any sunshine on any body part is not wise. It will escalate the disease. I hope someone else jumps in here. You need to be seen by a rheumatologist ASAP. I have Hashimotos as well. I’m in the USA. He would never prescribe steroids. My dermatologist too is not eager to give them to me even in a cream. I’ve tried elidel cream for rashes and it worked great. But I do not expose the area to any sun and I use it sparingly. This lupus UK site has free information on lupus SLE. I don’t have the link but an administrator can help you with it. Best, Titters

[carorueil in reply to MrsMarigold]

Thanks Titters, I have a rhumatologist - for other problems. I rarely expose myself to the sun as I don't tan so have always used SPF50 even before this diagnosis... Re Hashimoto's I don't know whether it was a coincidence but since using steroid cream last year my cortisol levels plummeted (also had an extremely stressful year with house moving from building site next door). Thank you for your advice - this is why I'm on these fora - having lived in France for over 28 years they tend to be heavy-handed with drugs. I've done full blood tests in July and everything was 'stable'.. I'll see if I can get an appointment to see my rhumatologist, my endo is in Dublin (will see her in October but she was pretty uninterested in lupus diagnosis)..

[Betty909090 in reply to MrsMarigold]

lupusuk.org.uk/wp-content/u...

[Betty909090]

Why weren’t you prescribed Levothyroxine for your hypothyroidism (Hashimoto’s disease) ?

Autoimmune inflammatory disease of the thyroid?👆🧐

Should have had thyroxine hormone replacement treatment?

[carorueil in reply to Betty909090]

I was prescribed levothyroxine - in fact I was overmedicated it to the point where I had a seizure! I've been on NDT for the last 11 years and that works much better. Endocrinologist confirmed I'd been put on meds way too strong and way too soon.

[Betty909090]

lupusuk.org.uk/wp-content/u...

[carorueil in reply to Betty909090]

Thanks for this information - I'll have a look at it. Would have been nice if we had a gp who saw the global picture and pointed me towards the right specialist unfortunately our gp didn't believe in Covid so have been trying to find a good one for the last 18 months!

[Betty909090 in reply to carorueil]

Find it very hard to believe that your “GP doesn’t believe in covid” ? Very strange.

All GPs get paid for each and every vaccination they give their patients.How can a GP not believe in covid and still be registered as a doc?👆🧐

BTW the endocrinologist needs to check your blood levels for T3 and T4 to prescribe the correct dosage for Levothyroxine. I’m on 75 micrograms/day and it has helped. Will be life long for this vital hormone replacement treatment because of my AI thyroid disease.

My hospital consultant diabetologist/endocrinologist prescribes it. My GP lacks the expertise to do so.

[carorueil in reply to Betty909090]

Hi Betty909090 well he didn't - he removed his mask but I live in France so different situation - unfortunately it meant being a bit without a gp for a while as I tried to find one who was more holistic. Quite a lot of specialists in France have been anticovid and fell into that whole bigpharma conspiracy theory unfortunately (one dubious research suggested plaquenil would 'cure' Covid and there was a stampede to use it). I've been getting my FT3 and FT4 done every few months for 11 years and antibodies etc. I'm not on levo as it made me ill - taking NDT which suits me better. My new gp has been very helpful with low cortisol triggered last year, it's my endo (in Dublin) who I'm going to have to 'convince' that the blood test results show an improved situation since I increased my meds (she prescribes NDT but doesn't understand how it impacts TSH so hoping having a physical consult with her in October will convince her! I think until there's more research on auto-immune diseases we're all just trying to balance/control our symptoms..

[carorueil in reply to Betty909090]

Thanks Betty909090 I've done quite extensive blood tests since April 2021 and july this year and was told everything was stable.... will see what rhumatologist says when I get to see him!

[Caramia1964]

hi , I was diagnosed with lupus after a biopsy on a persistent rash on my back . No topical cream helped . I was then commenced on plaquenel 400mgs daily and prednisolone which helped immensely. Since then I have had flares and due to developing muscle pain , reynauds , increasing joint pain etc etc so now diagnosed with SLE . I have hashimotos, sjogrens, among others . I have tried to reduce and stop prednisolone several times but each time I develop a flare , I would say after years of prednisolone my adrenal glands have stopped working ! I am now on 3 mgs and will likely have to remain on it . I do feel it was a correct prescription you received in regards to this and it was at a low dose to try and control your scalp lupus . It is a learning curve having lupus and no 2 people are the same . Big hug for you xx

[carorueil]

Thanks Caramia, I have no rash, it was just some 'bald' patch on my head that my hairdresser mentioned that caused me to get it checked out. I took 5mg of prednisolone for 5 years for adrenal problems which I didn't have so really wanted to avoid taking more strong drugs. I don't have a flare up that's why I'm trying to understand what's going on! So far as I can see it's just on my scalp - hence 3/5 of the dermatologists prescribing steroid cream - which according to the one I've seen for a year has 'stabilised' things. It was a learning curve with Hashimoto's and treatment for that, so trying to get a balance between side effects from meds prescribed and what meds I need: having been overmedicated here in France, I tend to err on the side of 'less is more'! thank you for your help Caroline

[carorueil]

Thanks BPDoctor, but like in every country not all doctors agree on treatment! 3/5 of those I've seen prescribe steroid cream for scalp, one Elidel and the other Plaquenil. I'm just trying to figure out what's the best option for me at the moment.I've got an appointment with my rhumatologist in October so will see what he says as he has a broader view of my general health issues.

[Betty909090]

”Dr shopping”?

There’s a huge difference in the U.K. between generalist GPs and specialist NHS hospital consultants who know what they’re talking about.👆

We who suffer with a range of complex AI diseases do not actually “shop around” for the doctor but expect honesty, integrity, experience and wisdom from the doctor!

There are far too many posts here from lupus sufferers who have been constantly “gaslighted” by doctors, typically GPs who are not honest enough to admit their ignorance. Ignorance is never bliss for the lupus sufferer with a range of symptoms desperate for a diagnosis.

Appropriate assertiveness is necessary otherwise we suffer unnecessarily for ages. Yes, we have to question and many times it’s sensible and right to do so whatever country one is in! Without prejudice.

[carorueil in reply to Betty909090]

Thank you Betty909090 for your reply: I am totally in agreement with you. I spent years with Hashimotos before I found the right treatment/doctor. In many countries there's the 'one size fits all' approach to disease and patients which definitely doesn't work with AI disease sufferers. Thanks to Health Unlocked forum I found information which enabled me to find a treatment for Hashi elsewhere: now my new French gp is interested in learning about it (not currently available in France). I think most people on this forum would love to just have the one doctor who can deal with all our ailments, sadly with our complex issues, that is very rare to find. The other thing which a lot of doctors - but especially specialists seem to forget is that we know our bodies: a good doctor is one that listens to the concerns of their patients and try to find a solution together. My experience with Spanish dermatologists proved this: they listened to my concerns about treatments for lupus (plaquenil) and suggested alternative treatment. For my lupus health issue I just want to know where I am now and what I should or shouldn't be taking but to understand this in an informed way which I think is what most people try to do in managing AI diseases.

[Betty909090]

”Dr shopping”? 🧐

There’s a huge difference in the U.K. between generalist GPs and specialist NHS hospital consultants who know what they’re talking about.👆We who suffer with a range of complex AI diseases do not actually “shop around” for the doctor but expect honesty, integrity, experience and wisdom from the doctor!There are far too many posts here from lupus sufferers who have been constantly “gaslighted” by doctors, typically GPs who are not honest enough to admit their ignorance. Ignorance is never bliss for the lupus sufferer with a range of symptoms desperate for a diagnosis.Appropriate assertiveness is necessary otherwise we suffer unnecessarily for ages. Yes, we have to question and many times it’s sensible and right to do so whatever country one is in! Without prejudice.

[carorueil]

Thanks but I've always listened to my body ! Unfortunately many specialists refused to listen to me! I had no symptoms and was prescribed levothyroxine prematurely, resulting in having two seizures in 3 years from being prescribed hormones that I didn't need at the time. Forced to take anti-epilipetic drugs and had every possible side effect: that's why I returned to Ireland and got 2nd opinions. Thankfully I had a gp at the time who also believed I wasn't epileptic & thankfully Irish neurologist confirmed that. Unfortunately a lot of specialists ignore what patients are telling them. I'm a newbie regarding Lupus but regarding Hashimoto's there is a general obsession with TSH and not listening to patients experiences of symptoms (if any) and even those who prescribe NDT don't always seem to understand how the drugs work. I have some wonderful examples of letters for French neurologists informing me that I was 'stupid'to stop taking anti-epileptic drugs: once I stopped levothroxine, brain scan normal & have never had a seizure since - that was 14 years ago, if I'd NOT listened to my body my health would have been in a worst state taking anti-epilieptic drugs that I didn't need.

[MrsMarigold]

Bravo!! I too have Hashimotos acute and chronic thyroiditis unfortunately for me it was left untreated until my 50s. Strong family genes on both sides. I say treated but I mean biopsies and ultrasounds. Getting ready for another. I had to go to a world premiere hospital and even then the lovely endocrinologist would not give medication because my TSH was “normal.” The goiter I’ve lived with my entire life (17 yrs when diagnosed with goiter) hurts like hell. I understand you completely. I’m so sorry for how you were treated. Lupus may never have been in our bodies if hashimotos was treated correctly. Mine has become a complicated case. But my local ENT is giving good advice. I will know what to do by Christmas. Good luck! Titters

[carorueil]

Sorry to hear about your story Titters🙁 My thyroid was fine - no family history nothing until whiplash from driving instructor...and the rest is history.. Do wonder whether the 5 years on 5mg of prednisolone (for adrenal problems I didn't have) "helped' bring on Lupus...Unfortunately we have to deal with what we've got now.. SO glad that you've managed to find a good ENT, hoping that you get some good advice by Christmas🙏 I've a virtual appointment with rhumato next week then tonnes of tests for gp before seeing endo in early October (hoping she'll finally accept the science re thyroid/THS/NDT/cortisol levels). Good luck Caroline

[carorueil]

Update: I've had my virtual consult with my rhumatologist who having looked at all the tests I'd done in the last 18 months, confirmed that I have LED and not SLE.I think the terminology he used was 'cutaneous lupus'. He explained the two 'main' types of Lupus and explained which one he would treat. It was at least reassuring that he explained both and confirmed that the dermatologist is the best place to manage my lupus. As I'd been hypo the last year - (he knows I have Hashi's) he was really insisting on getting that sorted out as he felt that would have contributed to my lupus being as we all know another auto-immune disease. At the moment I've gone back on using the lower-level steroid gel and will see how that goes: I feel it's a bit of a balancing act as would prefer to only use the stronger one where necessary, but will see. thanks for your advice! Caroline