Is there an age limit to LUPUS?

[yellowmarie]

i wonder if anyone has been told that you cannot have Lupus past the age of the menopause? last year, i was struggling so much i went to see a so called Lupus expert in London, he was supposed to be the absolute authority and he said it is impossible to have LUPUS SLE after menopause and said i had something else, he also didn't believe in mixed CTD - despite having positive ANA tests etc and having been diagnosed 5 years ago...has anyone else heard of this. I am still very much suffering with the same symptoms so i have ignored him and continue to take the medications prescribed for me! thank you

[WinterSwimmer]

I believed my lupus would subside after menopause. I can't remember why I thought this but I must have read it somewhere. Suffice to say it is not true and hasn't happened and I had a massively damaging flare a couple of years ago at the age of 59.

[yellowmarie in reply to WinterSwimmer]

Thank you... it certainly seems to be the same with me, i wonder why there is this confusion....

[Jhpc in reply to WinterSwimmer]

I was diagnosed when I was 60.

[yellowmarie in reply to Jhpc]

thank you - just confirms the ignorance around from so called experts!

[RosieA]

Hum, I seem to remember a post a couple of days ago written by a lady who had been diagnosed with SLE at 68 years. I think late onset is less common but certainly not unheard of, I think, but I'm not expert. x

[yellowmarie in reply to RosieA]

thank you!

[Paul_Howard Partner LUPUS UK]

Hi yellowmarie ,

Late-onset lupus is less common, but I have definitely spoken with a number of people who were diagnosed with lupus after the menopause.

[yellowmarie in reply to Paul_Howard]

thank you!

[Littleandperfect in reply to Paul_Howard]

Hello.. I was diagnosed just 28 months ago after a major flare .. and I will be 73 this November !

[Roarah]

Men have lupus....get another opinion.

[yellowmarie in reply to Roarah]

indeed! thank you

[yellowmarie]

i know, not sure how these people are allowed to practice! is really upsetting for patients - not to say confusing!

[Bakbre]

I was diagnosed with UCTD when I was 52 but I started with Menopause when I was 39 - so that’s a load of rubbish! Another so called expert/consultant who’s up his own bottom and believes he is omnipotent!

[Lottie89]

I was diagnosed at the age of 64 although I am fairly certain I had all the signs way before. I had to have an adrenal gland removed due to a benign tumour and this gave me a really bad flare, ending up with a hospital stay because of pleurisy and pneumonia. Having looked at some of my bloods from before then all the signs of Lupus were already there.

[yellowmarie in reply to Lottie89]

i think it was definitely the same for me, for a long time... thank you

[Jhpc in reply to Lottie89]

Yes I was told I had probably had it for years too x

[Lizard28]

I was diagnosed with MCTD at around 60, my Rheumy is not one for giving out a diagnosis easily, goes strictly with blood tests, it’s like pulling teeth out to get info out of her, so I as very surprised to hear her saying this to me.

[yellowmarie in reply to Lizard28]

thank you

[CecilyParsley]

Hi, I am so very sorry that you had this experience. I too went through the menopause at 40 after an emergency hysterectomy. It started a rollercoaster of symptoms which I struggled with for eight years before being diagnosed with Lupus. I then saw another Rheumatologist who decided I had Bechets. My GP referred me to an expert in London who confirmed the diagnosis. When I returned for a check up three months later the same consultant told me you don’t have Lupus but UCTD and discharged me? The despair, confusion and anger I felt was overwhelming for a while and I refused all medical help until I got very sick two years later. Since then my diagnosis has been confirmed then disputed many times. Currently because a Rheumatologist told me I had Fibromyalgia and hysteria whether I liked it or not I have not had any shielding letters and am not considered vulnerable. These Consultants have little understanding of the impact of their throwaway remarks. We deserve better. Keep fighting you deserve better xx

[yellowmarie in reply to CecilyParsley]

oh bless you, i am so sorry... and thank you

[Barbara17]

I was diagnosed at 62

[yellowmarie]

so it really just goes to show... who are these "experts"!!!!

[Cottar]

I was diagnosed at 67 and my menopause began at 42 so I’d try and find another specialist.

[diane1428]

I have had SLE lupus and aps since I was 18. I’m now 67 and still have it. Shocking to hear this. Regards Diane

[Whippet_lady]

I believe my lupus was triggered by the menopause. And I've read that it can be. Either that or it was a very big coincidence. I had a few rounds of hormone treatment for IVF in my 30s then went into perimenopause just past my mid 40s, had all sorts of symptoms for all sorts of things (didn't know anything about lupus then), then, at 52, came through the other end of menopause straight into a lupus diagnosis.I hope you found yourself a better expert. Very frustrating.

[yellowmarie in reply to Whippet_lady]

thank you so much, certainly seems as if i have been misled by the "expert" but luckily my local Rheumatologist is treating me as normal so have access to the LUPUS drugs etc... makes me think how many people are being misdiagnosed and therefore mistreated...

[Krazykat26]

Rhoda Borrocks!! 😉 U say this 'expert' is a man?!? 😹I was diagnosed at 54 during the menopause!! 🌈😽😽Xx

[yellowmarie]

that made me laugh! thank you Kat

[Krazykat26 in reply to yellowmarie]

You're most welcome 🤗🌈😽😽xx

[Treetop33]

I was diagnosed with SLE when I was 50. Now 54, definitely post-menopausal and it's still here.

[yellowmarie in reply to Treetop33]

Thank you, seems a very similar story....

[Willow1414]

Hi Yellowmarie

I was diagnosed at 56 , I was diagnosed with thyroiditis at 54 . I have been photo sensitive all my life , my doctor ran some blood tests has I had developed swollen stiff finger joints and vasculitis bleeds around my finger ends . Looking back I’ve been MCT all my life . Nobody seemed to put 2 +2 together . Im now diagnosed with SLE /Sjowgrens overlap , although I do meet almost all of the 11 criteria for SLE .

My main consultant originally diagnosed Sjowgrens , he still likes to keep hold of Sjowgrens ??

Hope you can see another specialists , has what this rheumatologist is suggesting is not true .

🦋❤️

[Partner20]

I was given my lupus/ctd diagnosis in my late sixties. I had a hysterectomy in my early thirties, and menopause in my forties. Children, adults and men can get lupus; experts don't always know everything. I hope he wasn't trying to sell you anything!!

[Hidden]

Hi yellow marieI was wondering if you could tell me the specialist name you went to see. I'm currently saving to see a specialist in London. And I obviously don't want to not only waste my money but also put myself through that level of stress either. You can privately message me so as not to advertise it. But when I read your message my heart went in my mouth. Iv had a really useless rheumatologist diagnosed me in 2017 after suffering for 11 years getting progressively worse and worse. Looseing more and more of myself with every test and every year passing. Being told everything from m.s, m.e c.f.s in my mind , depression you name it. Then in 2017 my rheumatologist said ....you have lupus sle sero negative. ( My ana is negative) or was when he checked it. Iv spent over 3 years on hydrocloxiclorquin and azothyropine and steroids. Compared to the past 11 years I had quite a life back. ( As.long as I pace, rest and look after myself) I have been quite good. Then just before lockdown my rheumatologist says....."I read a paper this morning that says if you test negative for ana there is no such thing as lupus sle sero negative. We will just treat you nearly dieing this last year as your sjrogens ok?. So he's written a ? Over my lupus now. I came home devastated. Then read the very same day on HERE a paper from some rheumatologist saying the above.

However....one of the leading rheumatologist in the uk also wrote a.paper discounting this theory totally. As I now know now. I could of tested positive when I was 12 when I had epstein barr / glandular feever or when I had a near fatal motorcycle accident or a couple of other occasions in.my life when it could of been triggered by severe viral infections I had. So now I am on the hunt for a forward thinking lupus specialist who can look at me with fresh eyes look at all of my complex symptoms and make a real diagnose based on facts and science and some forward thinking common sense. Instead of stuffy self-righteous self fufiling sanctimonious opinions of a rheumatologist who sees lupus once if that.

I have been off work now since November 2019. So money is tight. I can't even apply for pip to help. One I haven't got the energy to fill in the form two I can't deal with the stress of the meeting and three if I failed I could not go through an appleal. Not to mention my rheumatologist has question marked my lupus so puting doubt in p.i.ps heads about my many other illnesses. So as soon as I have enough money I'm going to a lupus specialist that has been recommended to me several times on here. However after reading your post I felt so much for you. Iv been in your shoes but reverse. Lol. Sometimes I believe it's us the patient who knows more than they do but they just don't or won't listen to us. As like you I am on.my meds and managing quite well. So if we don't.have lupus then why are our meds working? Mind over matter? I think not. I personally never believed these meds would work on me. Then within weeks I felt totally different. I was amazed. So if not lupus again why are they working?

Crazy! Anyway I am so sorry for the long post I think I needed to off load too. Lol long time without anyone other than hubby to talk too lol.

I would appreciate it if you could tell me who you saw though. Just to rule them out. Private message me if you want. Many thanks lovely.

Keep taking the meds your doing the right thing I think.

Keep safe and thanks again.

Virtual 🤗🤗🤗

Nikki.xx

[yellowmarie in reply to Hidden]

Thanks so much Nikki, I'll dig out the name and send it to you - it is so confusing and worrying... please stay strong and i'm sure there are much better LUPUS specialists out there.... much love, Marie xx

[Krazykat26 in reply to Hidden]

Hi Nikki 🤗 I hope u don't mind me butting in but I just wanted to say how moved I am to read your story about your care or rather lack of!! I would like to say please don't be put off with applying for PIP..they make it hard deliberately but there r people who can help u to complete the form or even do it on your behalf!! U don't have to have a diagnosis coz the whole process is to assess how u find everyday living difficult!! It is harrowing I admit but now there's lots of resources online to help complete the form n if it came to it they will help with appeal too!!

I'm just thinking that if u had pip to help u financially then it will help u to fund seeing a decent rheumy!!

One more thing the DWP r not doing face to face assessments for now..it's telephone only so now might be the time to apply 😉

Best wishes 🌈😽😽xx

[Hidden in reply to Krazykat26]

Thank you krazykatWhat a lovely reply. I don't mind you adding to the conversation atall. 🙂 I think I am in defeated mode. As you are well aware too I know. I just have no energy and in pain and so so down at the moment that everything is to much ya know. *Blows a big breath*

If I feel a bit better I'll have to get on line and look for someone to help me.

I know I need a proper rheumatologist because last March when I went to see him I was 7 stone and a skeleton. No muscle mass on arms and legs and he said wow you look great that's the best I have seen you!!😮 Then he said oh it's probably your sjrogens don't worry about it I'll just give you double steroids give you some energy and then you can go back to work in two weeks lol.

When I left I felt totally lost.

But thanks for your reply. I'm really touched.

Many thanks and hugs.

Stay safe and well.

Nikkixxx

[Krazykat26 in reply to Hidden]

Oh yes I know the Blow a big breath!! 🤗 Feeling lost in the wilderness n defeated 😔If u can gather some spoons..apply..it won't cost u anything n your award will be dated from when u applied.

Once u get the form there will be about three weeks to complete it..they give u a date by which to send it back.

I've recently gone through the process n it is stressful n I understand that you're in pain n fatigued n all the 💩that this 🐺stuff hands out daily!!

Citizens advice website is worth a look to help u with the process..it explains things n is easy to follow!! Have a lookie see n then u can decide

Gentle cyber 🤗🤗🤗to u lady 🌈😽😽xx

[Hidden in reply to Krazykat26]

Thank you my lovely🤗🤗🤗🤗

[yellowmarie in reply to Hidden]

hi Nikki, the doctor i saw was *********** at ********* - i had already been diagnosed with LUPUS, 5years before (positive ANA, Lupus anticoagulant etc), so had gone for some help as i wanted to see if there was any new treatment etc as i was really struggling.... i was so confused and upset when he said well you can't have LUPUS because you are too old! i have decided to ignore him though so please don't go to see him! I do hope you get some help soon and you can start to feel better and most importantly listened to and cared for... much love, Marie xx

[Hidden in reply to yellowmarie]

Oh thank you so much for the reply. Very much appreciate it. Luckily it's professor dela cruze?(think that's how it's spelt).That is just rediculas. It's so stupid it's laughable. I'm glad you're still on your treatment though. I wish you all the good health for you marie.

I will update you as soon as I get to have a consultation with him.

Thank you so much once again.

Stay safe look after you.

🤗🤗🤗🤗 Virtual hugs.

Kindest of regards Nikki xxx.

[Potatoheat]

Diagnosed at 35 , no bad flares till I was actually going through the menopause at 50. I did read that somewhere too, maybe old ideas still being recorded.

[KayHimm]

yellowmarie-

It could be the doctor was careless in that way he described it to you. The vast majority of lupus patients are diagnosed in child-bearing years. But that does not mean children and post-menopausal women cannot get it. Lupus is always diagnosed on clinical grounds and confirmed through laboratory testing. As people have said here, if a doctor believes you have enough evidence for lupus, you would be diagnosed regardless of age.

As for mixed connective tissue disease, it is hard to know what he meant. If he is an expert, he may have thoughts about the limitations with this diagnosis. The people here who have mixed connective disease have overlapping symptoms and these different manifestations are treated. If you were diagnosed already with MCTD, the rheumatologist owes you a better explanation than that he “doesn’t believe in it.” Then how does he describe your condition?

You have been left in the dark.

Good luck getting clarification

K

[yellowmarie]

thank you Kay

[Christineosh]

I am 77 and have had Lupus after menopause. Mine has got worst and had Organising Pneumonia for nearly two years. Massive doses of Steroids helped. Lockdown has helped me to get to 5 mg but now effecting my bladder. I have been on all the drugs and none helped so I came off the lot. I went to the Lupus centre at London Bridge but my insurer would not cover me so am seen at Guys

[yellowmarie]

ahh, ok... thank you

[BeeHoneyB]

How scary that a “expert” had such a dismissive attitude and how scary that they are giving out such advice.

I remember my consultant a professor in the field who only recently retired said. We can only manage the condition through medication and tests to see how it’s affecting the body it does not discriminate with age or gender and it’s a life long condition.