Newly diagnosed - Struggling for answers - LUPUS UK

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Newly diagnosed - Struggling for answers

Georgiemarie_91
Georgiemarie_91

Hi all - I have very recently been diagnosed with Lupus following a journey last year of 2 miscarriages and a very late stage ectopic pregnancy which very nearly resulted in me losing my life. I was referred to a recurrent miscarriage specialist who put me forward for tests to see whether there was anything underlying - lupus was found.

He has since referred me to a rheumatologist who wrote back saying I should see a haematologist instead (*rolling eyes*) - I just want some answers.

We are desperate to start trying for a baby again but I obviously don't want to do this until I have seen a specialist to talk about treatment.

Google isn't providing me with many answers so I wanted to chat with people who have experience with the condition (No friends/family suffer with it).

Some questions I have:

- What specialist have you been referred to?

- What treatments have you been offered?

- How has this affected pregnancies / have you needed to do anything different?

- How does this affect you in your day to day life?

- Anyone else experience extreme insomnia? I am literally getting about 2/3 hours sleep per night and I just can not take it anymore!

Any help greatly appreciated

23 Replies
oldestnewest

Were you diagnosed with lupus or with anti-phospholipid antibody syndrome and the lupus anti-coagulant? This

Can be very confusing. When someone has recurrent miscarriages, they run tests to see why. It sounds like tests indicated you have a clotting disorder that is also common in lupus.

Rheumatologists do diagnose and treat APS, but they frequently send patients to hematologists for treatment.

I am guessing, but if you have no other symptoms and the rheumatologist is discharging you, you have APS without lupus. Lupus patients usually receive treatment with anti-malarial drugs even if they are not terrible ill. Did the rheumatologist discuss medications with you or simply make the referral to the hematologist?

The good news is that they have come a long way in being able to help people like you to have successful pregnancies.

Best of luck.

K

Hey K

Sorry I should have been more specific, I was diagnosed with anti-phospholipid antibody syndrome and the lupus anti-coagulant by a recurrent miscarriage specialist (after running lots of blood tests).

He referred me to a Rheumatologist (who I haven't met with). The Rheumatologist wrote back to the specialist today and said that unless I have a connective tissue disease then I should see a Haematologist instead (again, not yet seen).

I would just like to know who exactly I should be seeing out of the 2 and what sort of treatments I should expect.

I've actually dealt with a lot of the symptoms of Lupus for years (without realising it)...joint pain / skin rashes / sensitivity to light / extreme fatigue / poor circulation etc.

Even though I have lupus in my kidneys my rheumatology doesnt look after them my kidney specialist does.lupus has also affected my lungs and I have a chest specialist for that bit so I dont see why you can be under both...all you need is for them to communicate

You might want to let the referring doctor know about your past symptoms. I would think the rheumatologist would want to see you in light of your symptoms.

The hematologist will determine what sort of treatment - could be aspirin or anti-coagulation - that will prevent clotting.

Does your doctor know about your other symptoms? Any headaches or unusual neurological issues?

I haven’t had a huge amount of interaction with the recurrent miscarriage specialist honestly. I’ve had one phone call where we went over my pregnancy history and then I had a call with his secretary who told me my results had come back positive and that I was being referred. We haven’t had a conversation in which I’ve been able to discuss my symptoms - do you think I should let him know?

Definitely. It makes sense the rheumatologist is sending you to a hematologist. Neither is aware of earlier symptoms and the need to rule out lupus.

The obstetrician probably thought the rheumatologist would pick up on anything in their evaluation.

Thanks hun - I’ve just emailed the recurrent miscarriage specialists secretary a list of my symptoms so hopefully that will give them a bit more clarity!

That’s great. Please let us know what happens. And good luck!

Thanks Kay - will do!

Hi sorry you are struggling so much.i have sle and lupus nephritis.pregnancy wise I cant help as I was diagnosed in my 40s after I'd had my 2 children but the rest I can offer a little info.

1) Rheumatology is the best way to go with lupus gps dont know how to deal with us.you need full bloods inc DS-DNA, ANA,immunoglobulins and compliments but they will fob you off as you can still have lupus with normal bloods write down every symptom,sensation,feeling ,ache and pain even if you dont think its relevent.

2) treatment if you need it often starts with hydroxchloroquine and possibly steroids and at a later date powerful immunosuppressants like mycophenolate or methotrexate ( there are others)

3) sorry cant help ...I'm too old

4)daily life as you knew it goes.....extreme fatigue,brain fog,headaches,aches and pains,rashes,flares you name it we suffer from it but it all affects us differently.some days you can wonder how you managed to get out of bed other days you can do more

5) I personally dont suffer from lack of sleep others may be able to help you.im the opposite I have phases where all I do is sleep .sleep all night and nap through the day.

Google the spoon theory... it's a brilliant analogy of lupus and chronic illness as a whole.i wish you well hope you get some answers and support soon x

Thank you!

Yes I’ve looked into spoon theory - definitely resonates!

I’m in a weird space of being unbelievably tired all the time but not being able to sleep, I’m averaging 2 hours sleep a night - last night I got about an hour 😖

I just wish these specialists would get their acts together lol it’s so frustrating being diagnosed with something but not having any answers past that for weeks. I just don’t know where to go from here.

We’re desperate to start trying again for children (I already have a 7 year old daughter - smooth pregnancy) but after the problems we’ve had likely caused by Lupus/APS I’m so nervous and do not want to do anything until I speak to someone - anyone 😂

baba
baba in reply to Georgiemarie_91

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Hi Georgiemarie

I have lupus sle and lupus nephritis am also positive for the lupus aps. I am currently 27 weeks pregnant. But i was first diagnosed with lupus 6 years ago after my first child!

Which went crazy out of control because didn’t realise I had lupus etc until it blew up and ended up in hospital for a long time!

This baby for me is a miracle as I was told definitely no more babies for me!

It will also be possible for you but definitely recommend you get the correct help you need before trying again. I had meetings at the pregnancy hospital before we were aloud to try to conceive and even after that had to wait 6 months to try.

Regarding the blood I was put on daily blood thinning injections and then once 12 weeks pregnant aspirin daily was also added.

So sorry to hear everything you’ve been through. If you have any questions etc feel free to message me

Sarah x

Thanks Sarah and congrats on your pregnancy.

It's all a bit surreal to be honest. We always joked that all my partner had to do was look at me and I would fall pregnant but now with the lupus and also losing a tube due to the ectopic I fear that we're going to have trouble.

With the thinning injections, was this something you had to go to the hospital for daily or did you have to do it yourself?

Hi, I was diagnosed with lupus as a teenager (16) but mine was actually caused by being left on repeat prescriptions of minocycline tablets for acne and now I will always have a positive ANA. I experienced all the lupus symptoms and side effects from the tablets, including my period stopping completely. The only side effects on the list I didn't have by the time I was diagnosed (it was actually my mum who realised what it was despite me seeing many doctors and having lots of tests)was organ failure, then death. My consultant describes mine as mild but ever since I was diagnosed, I have ended up with more health problems. Firstly arthritis, then when we tried for a baby (I was 26 at the time) we couldn't get pregnant and after many tests were diagnosed with unexplained infertility 3 years later and put forward for a round of ivf on the nhs. Interestingly, I had lots of bloods done but my gynaecologist noted that one had a high number of something and said it could be an indicator of antiphospholipid syndrome. My lupus consultant disagreed and said she thought the high reading was done to me being struck with quite a few chest infections that year. However, as my gynae had put it in my medical notes when I did the long ivf protocol, I had some extra additions to improve my chances of conception including clexane injections and taking a daily dose of baby asprin 75mg. Apparently the latter is used a lot to combat antiphospholipid syndrome. In the end, we had 8 eggs collected, 5 fertilised and 3 made it to day 5 so there was no sperm, egg or fertilisation factors. However, on the transfer day they said one of the three was the best to put back and they didn't believe the others would survive being frozen and thawed. We were really lucky for it to work with just one and 1st time and now have a 16 month old. Incredibly, I also found out I was pregnant again, this time naturally and I'm due Septemeber. The doctors have dubbed it a spontaneous pregnancy. Despite my lupus consultant insisting I didn't need clexane (she said baby asprin was fine and actually good for mother and baby in pregnancy) I really believe we were either having a blood or implantation issue which stopped us conceiving. Also during both pregnancies I was/am being closely monitored and put under the immuno fetal clinic for extra scans and bloods. With lupus you have a higher risk of pre eclampsia. I hope this helps.

Massive congratulations on both pregnancies, I bet you're over the moon.

I can imagine we're in for a long journey here - better strap in!

Definitely ask about baby asprin and clexane. I really don't think I'd have either baby if it wasn't for those, no matter what my lupus consultant says. I also know one of my maternal aunts initially struggled to conceive and her and her husband apparently had blood that would 'fight' as she had some miscarriages. The doctors referred to it as sticky blood and she had to have injection throughout her pregnancies with my cousins to ensure she wouldn't miscarry. Best wishes to you on your journey and PM if you like x

Q & A's with Prof Graham Hughes today at 1.30

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Hi there! Im so sorry for your losses. I know the pain of loss only too well. I had an horrendous start to motherhood. I lost 2 babies late in pregnancy and almost lost my life with the first pregnancy, i developed HELLP syndrome and was on life support. At the time I thought I was a fit healthy 25 year old. At work 30 wks pregnant that day and by the evening I was on life support. I was told after this pregnancy that it was a freak reaction and shouldnt happen again as I was a healthy young girl. It was only after it happened again during my second pregnancy (I wasnt ill, my baby stopped growing and died) that after running tests I was diagnosed with APS, protein S deficiency and anti-nuclear antibodies, suggestive of lupus, but because doctors thought I had no real lupus symptoms I was just referred to haematology. But looking back I did have joint pain, rashes, hair loss as a teenager which I never thought to mention cos lupus was so unknown to me and I was mistakenly treated for ecezma. Anyway I was advised by the high risk obstetrician not to have any more babies end of, which was devastating. A year later I discovered I was pregnant again (unplanned) so was petrified. I was treated with blood thinners and aspirin and scanned every week after 20 wks. It was a really stressful time but I had a really successful pregancy and my son was born at 36 weeks, which my consultant said was a miracle pregnancy. I was offered a termination by the hospital because my life was considered at such a risk, they gave me 50/50 chance of survival. 3 yrs after this birth I went on to have my second child, again treated with blood thinners and aspirin. It was after this baby that I took really ill with life threatning lupus and spent weeks in hospital. The Rheummy who i met for the first time told me that doctors failed to join the dots of my history of rashes, joint pain etc and the aps diagnoses and I should have been diagnosed with lupus and being carefully monitored which I wasnt at the time. I now had so many lupus complications which could have been avoided had I been seen by Rheummy before I got pregnant. So my advice would be to definately see the Rheumatologist and explain your symptoms, however small, because as in my case my lupus would never have got so bad if the haematologist referred me sooner. That lupus attack has left me with bad lung damage (retrictive lung disease), thats irreversiable and I was so ill they were unsure if i would recover, as it can be difficult to calm a real bad attack on the organs. But this was 10 years ago so there is alot more awareness of lupus now and very successful treatments. I was given a zero chance of carrying a baby and I had 2, it was a difficult journey but the medical profession has come on leaps and bounds treating lupus pregnancies, so you will acheive your dream of becoming a mum, but just plan things well with the specialists first and speak with a Rheummy too, explain all your symptoms, however small, over the years, at least then you will have the best guidance and support planning your baby in the safest way possible 💜

I'm so sorry you've gone through all of this, honestly it all sucks so bad.

Pregnancy loss is horrific and the ectopic pregnancy was the scariest moment in my life. I was faced with not knowing whether my daughter (7) was going to have gone to sleep with a Mummy and to wake up without one.

I'm so pleased that I pushed for tests to be completed because honestly they were so reluctant (they said I needed to have had 3 miscarriages to be referred and they didn't class an ectopic as a miscarriage so in their eye's i'd only had 2). It makes me sick knowing that I could have been walking around without knowing anything and could have been trying again for a baby.

Good for you pushing for the tests! Your exactly right, you could have been going into another pregnancy blind and who knows the outcome, so at least now your armed with all the facts, which gives you the best chance possible of a successful, healthy pregnancy. My lupus sumptoms flared from 3 months post natal and continued til my baby turned 1. I was constantly complaining to my GP who basically ignored me! It wasnt until I grabbed my GP and told her I would be found dead that she admitted me to hospital for tests. I spent a week in hospital, then told I was having a CT scan before I was discharged that day. After the CT there was complete panic I was blue lighted to another hospital for complications with my heart, lungs etc! I spent 5 weeks trying to breathe, and I finally was diagnosed with severe lupus. The Rhemmy told me this could have been avoided had at the time of my horrendous pregnancies, I had been referred for lupus investigations. It was my son’s first birthday when i was admitted to hospital and like you say, I was so scared I would never recover and see them grow up. It took me a long time to come to terms with the damage lupus caused and how this could have been avoided, but Im just grateful Im able to see my boys grow up, and Im doing alot better now, the Rhemmy was absolutely a life saviour 🙂 I had no idea my sore thumbs and knees and skin rashes could have beenlinked to lupus, not one Doctor even indicated this, so Im so happy your ahead with your knowledge, so whether you have lupus or not, things will never get as bad for you ☺️

Thank you - this is all super helpful and also so shitty to know that we both had to push so hard to get any sort of answers! Scary really!

Hi Push to see a rheumatologist and make sure you have a list of symptoms - check what might be connected to Lupus - it's a long list. I lost nine pregnancies and nearly died with pre-eclampsia and liver failure before giving up, but things are better now. Talk to the recurrent miscarriage clinic - you need to get on both aspirin and heparin - inject yourself daily - it's fine, you do it sub-subcutaneously and it rarely hurts and then is not bad. Good luck.

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