Research indicating skin less affected in later onset lupus

[Barnclown]

Hello all: have a feeling this link could well interest some of you:

medpagetoday.com/Rheumatolo...

[babssara]

Thanks again BC for the informative research paper.

x

[Barnclown in reply to babssara]

You're v welcome babs 🤗

I've been looking up a term used in this article:

Immunosenescence

Turns out this is especially relates to later onset immune dysfunction

Here is a good explanation:

en.m.wikipedia.org/wiki/Imm...

This wiki article is quite an eye/opener: explains a lot about even our extra predisposition to infection (apart from our immunosuppressant meds)

XO🍀

[cuttysark]

This is brilliant!!

So often they seem to look for the classic textbook signs and symptoms and dismiss if they are missing.

I have never had the classic butterfly rash and my "lupus" like symptoms surfaced about my very early fifties.

What I do get though at flares is a hot , red right cheek! Never the left one. Whenever it is there ,the joints flare too ,along with everything else.

I also, on both cheeks get weird tramlines at times. Strange marks as if I have been lying on a crushed pillow and it has marked my face, yet I haven't been lying down at all. The ridges stay for most of the day then eventually disappear.

I am sure many of us have our own type of weird skin things, especially unique if we have presented later in life.

Thanks BC , those links are so, so useful!!,

C xx

[Barnclown in reply to cuttysark]

Your tramlines sound especially 'fun' (not!)😕

You're so right: there does seem to be lots of variation between cases...this is why I think of my stuff as 'my version of' whatever: lupus, sjogrens, etc etc.

Glad you can make use of these links...keep our brains revving over, no?

XO🍀

[PMRpro in reply to Barnclown]

Do you not wonder if it may be a case of a lot of people falling between the stools? I believe there is far too much dependence on a "full set" of symptoms for what they perceive to be a specific disorder when in fact autoimmune disorders of all sorts can overlap with symptoms of more than one - resulting in a very vague picture that they cannot assign to any particular box so they wave their hands and deny all knowledge. It isn't just lupus - it's everything pretty much.

I can understand it historically because they didn't have the pathological findings to know they were different - but I imagine they still don't think laterally enough even these days.

[Barnclown in reply to PMRpro]

Yes, yes and mega yes! As always, you sum this phenomenon up ultra clearly & concisely!

[littleeffie]

Nice one!

It would help if these experts widened their blinkers a little more to get the bigger picture.

Thanks again for your wonderful,thought-provoking finds.x

[Barnclown in reply to littleeffie]

👌👍🤗😘🍀

[knitsandie]

An interesting article and pertinent for me. I developed symptoms from aged 56-60 and have my own range of quirky problems. My rheumatologist accepts that I do not fit in the traditional SLE box. I attend his connective tissue disease clinic and also attend a dermatology clinic too. I am ANA and ENA negative, have joint pain and swelling, hair loss and have Raynaud's phenomenon, which resulted in ulcerated fingertips a year ago. I have never had the malar rash just a few red patches at the side of my face. This obviously confused the student doctor who was at my rheumatology appt a couple of weeks ago, hopefully she will understand that we do not all fit Into the same box and will be a much better doctor for realising that.

Thank you Barnclown, I often read your links, get the gist but do not understand them fully however. I appreciate your efforts to find info to help us all.

[Barnclown in reply to knitsandie]

Your story is really interesting knitsandie ...+ I find it greatly encouraging: thanks v much! 👏👏👏

If you feel like giving a bit more info, I'd be glad of it: How old are you now? What daily meds are you on & how much do they help?

[knitsandie in reply to Barnclown]

I am almost 62, I have dropped 2+ dress sizes in as many years but my weight seems to be stable, I always have a low White Blood Count which everyone except my rheumatologist seems to worry about.

I have been taking steroids for 18 months but have been reducing them and am down to 2.5mg a day now. My regular daily meds are hydroxychloroquine, mycophenolate, nifedipine and the extras to protect bones, these have remained the same for over a year. I feel pretty good most of the time, no real side effects from meds, though I did have some bowel probs when I first took myco. Joint pain and swelling hugely better, nifedipine helps blood flow to fingers, though I have never had the cold, white fingers normally associated with Raynauds. Hair is better too, still thin in some areas. I keep out of the sun a lot as my scalp will go red etc also if you take myco you need to plaster on the factor 50 as you know.

I was a teacher but decided to give up shortly after diagnosis, 18 months ago, to look after myself.

I need to pace myself otherwise get too tired. I found this very difficult to come to terms with at first. At the moment I'm pretty busy on Tuesdays and Thursdays and have a break M W and Fri. Life is good!

[Barnclown in reply to knitsandie]

Very interesting...we have quite a lot in common.

Despite having discovered I was diagnosed with lupus as an infant, the NHS only figured out that lupus had actually been underlying my collection of secondary multisystem diagnoses in my late 50s...so all these decades, secondary conditions have been responding more or less ok to treatment plans & lifestyle management, while certain issues got worse & worse. It was only after the symptoms generated by those issues became full on dramatic that the infant onset lupus diagnosis was recovered. Having had 5 years here on forum, I wonder whether many of us spend our lives coping with relatively mild early onset lupus...only for the cumulative debilitation to segue into diagnosis of so-called later onset lupus...🤔

[KarenC]

I was 52 when I was diagnosed with lupus and had been suffering the symptoms for about 12 months, no face rash at all. I was lucky with my gp and rhymy they collated all the symptoms and blood work fairly quickly.

Now when I am having a flare or very tired I do get a slight butterfly rash across my cheeks, not itchy or painful just a bit hot feeling.

I also suffer with dry eyes and mouth, which is particularly pleasant ( not) when the nose and mouth ulcers join in.

I have always wondered why I didn't suffer the rash and the sun doesn't have a massive effect on me. This article was very enlightening I am always grateful for information regarding our illness, thank you barnclown. Xx

[Barnclown in reply to KarenC]

Sounds like you & I have stuff in common, Karen!

Only if you don't mind telling us: how old are you? What daily meds do you take?

Eg I'm 62 and daily hydroxy + low dose pred & hydroxy + amitrip are helping me feel better than I have since my 20s....

🤗👍🍀

[KarenC]

Don't mind at all, I am 54 now 55 in April. I am taking low dose prednisolone 2mg now after reducing down from 25mg over the past 12 months, methotrexate injections weekly and amytriptyline 25mg nightly. I am also on fluoxatine, lercanipine, lansoprazalone and tramadol and paracetamol for pain.

The amytriptyline has helped with the severe headaches, they are less often and sometimes less severe, apart from last night after having a lovely day with my hubby a bad one came to remind me not to overdo things.

I use systane eye drops and salavix capsules for the dry eyes and mouth.

I must say the methotrexate has helped slightly with the pain especially in my ribs but the fatigue and joint pain can be crippling at times.

I think I have had some symptoms for a no of years, sore joints and fatigue but I put it down to getting older and working to hard and depression

Take care love and hugs coco

Karen xxxx

[Barnclown in reply to KarenC]

Thanks Karen...yep, me too (treatment plan meds for a collection of multisystem conditions as well as my lupus treatment plan meds)

You help me a lot to see myself in perspective & feel in great company🤗😘🍀

[KarenC in reply to Barnclown]

Thank you so much, you have all helped me so much, I know family and friends try so hard to understand but when you are putting on a brave face for them it's hard. When I see your posts it makes me feel so much better and not as alone with this never ending struggle of a disease. To be able to relate to many of your symptoms and problems of the past does help massively. Xx

[GloomyEeyore]

Thank you for posting. I found this very interesting. I wonder if severity of symptoms can fall between severe and none if age of onset falls between early and late? I was only referred to a rheumatologist 18 months ago but believe my symptoms started around 20 years ago when I was 18. All started after I had glandular fever. I do get what looks like a malar rash but it isn't there all the time. Some days it can be really very prominent and others almost non existent. Since starting on Hydroxychloroquine there are fewer days of it being prominent and the leg lesions I had have completely gone.

[Barnclown in reply to GloomyEeyore]

Good thinking. I was 50-something when we learned that my lupus was infant onset...this was at the same time the NHS finally realised SLE had been underlying my lifetime collecting multisystem illnesses diagnoses: go figure. Well, at least they finally got there 😝

[GloomyEeyore]

I think childhood illnesses and family history of autoimmune illness can contribute to an autoimmune illness in later life. I don't however believe any of that has been considered regarding my illness now. I was born with a heart problem. It was beating more than double what it should have been and I spent the first week of my life in SCBU. I was on Digoxin for at least a year. I was also diagnosed with pyloric stenosis at around two months old. My parents had kept telling the health visitor and doctor something was wrong as I kept projectile vomiting up every feed. It would take hours to feed me. Being the first born they were told it was normal, every baby vomits. It wasn't until it happened at one of my heart appointments the doctors realised something was wrong.

My Dad was a type one diabetic and my Nan is a type one diabetic. Both my Aunts, my Dads's sisters have thyroid problems. My Uncle, my Mum's brother, has psoriatic arthritis.

The reason I believe the doctors aren't taking these things into consideration is they are not on the computerised notes. I know this as my brother had mumps a couple of years back. I asked the GP I was seeing at the time if I had had it. He told me he couldn't tell me as when the medical records were computerised the paper records hadn't been transferred! They had just started a new set of notes! Patients with long term illnesses, like diabetes, had that put in but not everything for every patient. Paper records are still at the surgery but he couldn't be bothered getting up and going to look. Still don't know if I've had mumps but I didn't catch it.

Since the glandular fever I have been diagnosed with coeliac and adult onset asthma. I believe all this is connected and am hoping that the GP I have now and my rheumatologist can do the jigsaw between them and come up with an answer.

[Barnclown in reply to GloomyEeyore]

eeyore, i think your post is full on fab insights!

and i LOVE your point about records/computerised notes! this is a huge subject....e.g. when the 1st doctor my mother took infant/me to told her i had infant onset lupus, my mother pooh poohed him. over the years that followed, she continued to pooh pooh every doctor who referred to my lupus. clearly the treatments these doctors gave me helped. but my mother never told anyone, let alone me, about the lupus in my medical records. and when i moved to the UK @ 21 years old, the nhs inherited me with no records...because no one thought there was anything of note to send me away with. yikes....

[nanleighh]

That's very interesting, I was diagnosed at age 61 and don't fit into that description then because the first time I was tested for lupus was when I broke on the rash on my face and neck I've had joint pain, fatigue and other issues for years, But was told it was serum sickness or viral illness etc. etc. medical science has a long long way to catch up before they know much about this illness. I also have become very sun sensitive the last couple of years every time I go out in the sun for five minutes or more I burn. It's so funny to read this research, when you don't fit into any of the molds that they describe. Xoxo, Nan

[Barnclown in reply to nanleighh]

Your reply is especially interesting, nan: I guess you're someone who fits that great cliche...the exception that proves the rule! 👍👏😉

On the other hand, this article does stress that even the researchers were aware other research colleagues would have reservations about some of their conclusions - mainly due to the nature of this particular type of research. My impression is that research findings like these can often be the start of a dialogue which eventually results in more consensus amongst experts.

I totally agree: experts only really seem to understand the tip of the lupus iceberg!

XO🍀

[johare]

Thank you. Good to see study using so many subjects and including so many variables. Hopefully will give medics food for thought.