Anyone with ET and Lupus?

Hi everyone. So not having a good day. 3 weeks on and my achy back is no better and today I have woke up with a huge boil 😐 the reason I ask about Lupus is my gp thought and may still think I have Lupus and I'm beginning to wonder myself. I'm not self diagnosing but the symptoms I have all relate to lupus. Joint pain,stiffness, fatigue, muscle weakness, rash across nose and cheeks, hair loss.... I've probably left few out but as my haemotologist says the joint pain and stiffness aren't ET related I really am wondering if something else is going on. The foot pain is constant at min and really bothering me. Sorry for the big whinge but I'm just fed up with myself today.

Hope you all are feeling well

Mandy

22 Replies

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  • Hi Mandy, sorry you are not feeling well. Too much going on at the same time. I don't know much about lupus but sending you a virtual hug...

    Katherine

  • Hi katherne. Thank you so much for your kind response. There is a lot going on and was only diagnosed with ET last month after gp initially thought test results would come back with Lupus, so still getting my head round the news. It's just been a long few weeks and feeling pretty rubbish today. Thanks again for the hug 😊very much appreciated. X

    Mandy

  • Hi i have behcets disease whixh is v similar... its awful having both

  • Hi thank you for responding. I've never heard of your condition before. Sorry to hear your living with both. I am just finding it hard dealing with not knowing. When I'm anxious or stressed I have panic attacks during the night and I sleep walk so the disrupted sleep at the min isn't helping my mood.

    I know I need to be patient but I just want someone to tell me for sure why I'm having these symptoms.

    Thanks again for your reply and take care

    Mandy

  • Hi Mandy, I can empathise as I am having same symptoms. Haematologist is testing me for Lupus. I have previously tested negative. My Cousin and my sister are both diagnosed with Lupus but it took a few years to get the diagnosis. Hope you get it sorted.

  • Hi Capri thank you for responding. I'm glad your haemotologist is testing you and hope you get some answers too. My haemotologist just keeps brushing over my symptoms saying they aren't ET related and that its very unusual for someone with ET to have lupus as well, as Lupus tends to lower your platelets. So what's wrong with me then???

    I'm due to see my gp again soon so going to ask her to refer me to a rheumatologist. Hoping they might be able to shed some light on my symptoms. I don't want a diagnoses of Lupus but if I know what is wrong I can accept it and deal with it.

    It's just not knowing that's so frustrating!

    Do you have ET also then?

    Mandy

  • My cousin is diagnosed with Lupus SLE and her platelet count is over 600! She still has times when Lupus test comes back negative! Her symptoms are now very severe but started with fatigue and joint pains. It took her 4 years to be formally diagnosed. Hope your referral happens quickly.

  • Hi again. See this is the thing. My consultant says lupus sufferers generally have low platelets and yet that's obviously not the case. My platelets are around 850 at the min. My consultant says joint pain and stiffness aren't ET related symptoms and yet I had heard from loads of ET sufferers who have these symptoms. Just proves that the symptoms with these conditions aren't always so black and white. It just it would be nice to know for sure.

    Thanks again for your response

    Mandy x

  • Thats the frustrating thing.....getting a diagnosis!! It seems crazy but I feel its more difficult to deal with symptoms when you don't know the cause. In the past I have felt like a complete fraud when told I didn't have a condition after tests were negative but still feeling ill. I don't know about you but it made me paranoid that they were thinking I was a Hypochondriac. After my sister and my cousin's experience I now tend to speak my mind more during consultations and ask more questions. I agree that with Lupus it seems to be difficult to get a diagnosis but just keep going back if you have unexplained symptoms and don't be worried what people think, its your life and health!

  • I totally agree. I Def don't do not knowing. I second guess everything and read too much into things. If I knew for sure my symptoms are down to the ET then great. Likewise if it turns out I do have Lupus then I can get my head round it and then move on.

    I have a very long list of questions for my gp and I'm definitely going to speak out as you say. I can't spend my life at the min wondering what if?

    Take care

    Mandy x

  • I think a lot of autoimmune diseases are hard to diagnose initially. I know someone with lupus who was treated for Rheumatoid Arthritis for years until the full picture became clearer. Likewise, I also know of someone with Rheumatoid Arthritis who was repeatedly tested many years ago for Rheumatoid factor because of significant joint swelling and pain. The test kept coming back negative.....until one day it came back positive.

    Mary

  • Hi Mandy, sorry to hear this. It's the not knowing, isn't it? If you had a concrete diagnosis you can get on with it the best way you can. If your GP thinks it might be lupus maybe he should refer you to a Rheumatologist?

    Mary x

  • Hi Mary. Hope you are well. It's so frustrating not knowing. I'd rather know, process it, find out how to manage it and get on with my life. I feel I'm in limbo at the min. I am going to get my gp to refer me for sure. My haemotologist is very nice but I think he is just dealing with his wee part of this ( dealing with platelets ) and not looking at the the bigger picture.

    Thank you for your response Mary and for listening.

    Take care

    Mandy x

  • Lupus is very similar except i dont get the facial butterfly rash... i get n

    Ulcers in mouth n privates not nice.. joint problems extreme fatigue n headaches... at the moment ive just had a big episode causing me to have a slipped disc with a trapped femoral nerve... so my left leg is numb and the psin is excruciating then i have the behcets and et jak 2+..... i get fed up.... just lost my job so feel a bit down.... i hope you get sorted. I have a friend with lupus.. its not nice....

  • Oh my goodness wormwood 😐you really are having a time of it. Feel bad whinging and feeling sorry for myself when others have it worse.

    My thoughts are with you and thank you so much for responding.

    Take care

    Mandy x

  • Its ok... thays what this forum is for.... i must say it was quite theraputic just writing it down... as busy people we tend not to try bother our family friends even docs..... but it really does help occasionally lol..... i been to hospital this morning and got quite upset chatting to the doc.. so it obviously is bothering me more than i let on..... so feel free to vent on here or to me... i dont mind

    Take care of you xxxx

  • Thanks wormwood and likewise. Message me anytime you need to offload. It dosnt do any good bottling your feelings up and it's good to have this forum so you can chat to people who understand xx

    Mandy

  • Mandy

    I have PV and my sister has lupus. It took her many years to get diagnosed with lupus. It was only when she was finally sent to a rheumatologist that she was officially diagnosed and then provided with proper treatment. I would strongly push to see a specialist soon as your symptoms sound so much like those my sister has complained of. There seems to be a link between MPNs (ET, PV, etc) and autoimmune conditions such as lupus...

    Best wishes to you!

    Faye

  • Hi Faye. Thank you so much for responding. I have read that it can take a long time for Lupus diagnoses and after initial tests were done my gp was shocked to see results back as negative but she did say she wouldn't be at all surprised if was diagnosed at some point. Then the ET diagnoses was made and it seems all my other symptoms are irrelevant. The heamotologist did mention that the double stranded dna was at the upper level of normal but again just seemed to dismiss it. I don't know if that's relevant in a Lupus diagnoses or not. Anyway sorry for the big rant and fingers crossed my gp will refer me to a rheumatologist and get some answers.

    Thank you for responding and I wish you and your sister well xx

    Mandy

  • Have an overlap of Lupus and Scleroderma. The DS-DNA can be useful in diagnosing Lupu but there is no one standard blood test to confirm you have it. I was diagnosed based on blood tests and clinical observations - joint pains, fatigue, mouth ulcers, light sensitivity, raynauds etc. I also have ET.

  • Hi there. Thank you for responding. Hope you are keeping well. Fingers crossed I can get some definite answers soon. Difficult being told I have ET but my symptoms aren't ET related.

    Take care

    Mandy

  • Hi.... i was lucky the 1st time i had an episode of behcets i thought i was gonna die after being a very active and physically fit person who was never ill except really bad colds and tonsillitis..... i went down within 3 days and was extremely sick. Got taken to a and e . I was seen and then they got a second opinion. I spent 3 weeks in hosputal having elimination tests then they said if i had 3 more episodes then it was probably behcets. Of course i did and was officially diagnosed...... although i dont have a reactive pathergy test!!! I think autoimmune problems or conditions that cause inflammation go hand in hand with mpns if your unlucky enough to have them... and cause all sorts of symptoms. Unfortunatly the specialists only deal with their particular fields and dont collate the medical info were giving them. Ive found i have to do that....

    So keep pressing for an answer.....

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