Lupus and Flu

Just for everyone's information.. I was told, by a nutritionist in training, that elderberry would be good to take to combat the flu. He knew I have Lupus. I told him there is a careful balance with lupus patients between supporting the immune system and anti inflammatory support. Well, I trusted too much, and didn't research on my own. After 4 days, I noticed I was feeling very ill after drinking. I went online and found a note saying that people with lupus, or MS, should not drink elderberry as it might boost immune too much. Well, it certainly did with me. I had to go lie down after drinking every time. And I ended up with terrible lower back pain last night ( I think my intestines) and had to go to bed. I took Tylenol for the discomfort so I could sleep. Just wanted to share in case anyone was thinking of trying a holistic approach to the flu.

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  • So you have the flu. Not nice. Hope you recover soon.

    Interesting what you say about the elderberry. My fella is always trying to help with buying this treatment or another or suggesting particular food or drinks. I constantly have to remind him about possible interactions. But he means well, so what do you do.

    I have managed to make myself feel really awful twice in a week. We have had some good daytime weather recently but with really cold evenings. Twice, seems i didnt learn the first time, I have allowed my body temperature to drop when knowing i suffer from Raynauds. Both times it has set off a reaction with my lupus. This morning my entire body was locked up and racked with pain. I couldnt have got to a doctor if i had wanted to. I couldnt move. I took double my dose of steroids and feel much better now.

    I hope i have learnt my lesson this time.

  • He does mean well...sometimes its scary to try things that are natural because sometimes they can be bad for you or interact with what you are taking. You can sometimes google if they were would be reactions to something with your medication. I am ignorant about Raynauds. I noticed I am having trouble with body temp dropping where I get really cold. Please enlighten me? Interesting how it set off your lupus and caused you pain...How do you know when you are going to get cold? I guess you always have to carry a jacket...very interesting..

  • I have noticed its effects over time. When it first started I would get white fingers when I had been in the server rooms at work. But these days my whole temperature control has gone haywire. I have to ensure I eat regularly and make sure that my body temperature stays in a reasonable range. If I get chilled, that very quickly changes to something akin to hypothermia. I stay ice cold for hours even when wrapped in layers.

    I don't know precisely why it seems to trigger the lupus but it does.

    Yes, to always having to carry a jacket or similar. Last night when it hit I was wrapped in jumper, full padded coat with hood, sheepskin boots a quilt and I still couldn't get warm. I eventually fell asleep and woke later racked with pain.

    I know I shouldn't get cold so I was a bit silly to allow it to occur.

    You may have Raynauds symptoms yourself. Many people with lupus do. The first indications I had of it were my fingers changing colour when they got cold. If you think you may have it, mention it to your rheumy who will be able to advise steps for you to take dependent on your treatment plan.

  • My fingers have always been bad in the cold. I couldn't go out without gloves this winter ever. They don't go blue, maybe a little white. I do get cold sometimes where I can't seem to get warm. Always had problems with my thermostat. Have terrible time with heat too. Can't stand when I get too hot...

  • I don't know if its always been a feature but over the last couple of years I have noticed heat problems as well. Even when thermometer readings show ideal temperature I am clammy. It could be menopausal related but its very difficult to tell the difference between what may be fever related and what isn't.

    Over the last 24 hours I have stayed warm but often felt clammy although I am not showing a temperature. If I mention this to a doctor they think I am speaking in some alien language as they are taught that temperature means reading the gauge on a thermometer and nothing else shall pass.

    It becomes so much easier if you begin to get a handle on your own condition, because anyone other than doctors who specialise in your condition often don't have a clue.

  • understand. I always joke and say here comes the 1000 degree flash. That's what it feels like to me. My sister who is through menopause still gets the flashes. That's why I think it is not necessarily related to that, but thyroid or lupus problems. I have nodules on my thyroid and slightly hypothyroid. All too much sometimes.

  • Prior to the menopause I used to pride myself on never feeling cold when others around me seemed to be freezing. I got my comeuppence when three years ago at an elderly 55 (for menopause) Raynauds hit big time. First it was just my fingers, and they would turn deep blue. Spread to face over time, and this winter my toes have suffered. Have had ulcerated chilblains. Finally cleared up now weather is warmer, but even if I am wrapped up warm with lots of layers (and I am fat anyway) - I still get blue/white fingers when temperature drops or it is windy. Someone suggested Ginko and or Turmeric. Will give it a try. My daughter has Lupus with Raynauds too and takes Nifidipine - but makes her feel faint.

  • So sorry Catlady....upsetting to see your daughter has it. My daughters will most likely get symptoms when they reach menopause. The pediatrician said that they wouldn't have to be concerned till then. Isn't that funny. A doctor who doesn't even know my level of lupus can say that to me. Mine is fortunately low ended, but will it stay that way? Can I keep it there through diet and nutrition. I hope so. I think he was trying to not scare my daughter. But, my daughter 14, is annoyed with me pointing out lupus symptoms. I am only doing this so that she will understand when she gets older when she might have the same symptoms. In case I am not around. If I had known my mom probably had lupus ( died from colitis at 48), I would have started taking better care when I was younger. So sorry about the ulcerations. That must be awful. I get cracked heels pretty bad, but in the summer because of open shoes. I have been treating that for years. Hope you are feeling better with warm air approaching. We just got sleet last night and back to 30-40 degrees...Uggh....

  • Hi, thanks for your advice, good to know, I would have probably dived in there with out researching. Thanks again.

  • Hi I think I have something like Lupus the first bit of sun we get I start with this red rash on my face purple bruising on my arms my joints are so painful and I have puffy eyes and the most banging head ach and I'm so tired, it doesn't what pain killer you take it just doesn't work. I also have COPD level 4 I was diagnosed 10 years ago but I have had the above symptoms for at least 5 to 7 years I have had a blood test for Lupus and the specialist I saw didn't know what was wrong with me he then asked if I took steroids when I said yes he said it was the steroids that was causing the problems and discharged me.

  • Onamission...did the lupus come back positive? I don't get the bruising, but I noticed the past couple of summers, I felt like I was literally cooking in the sun. I live on the island, and love my beaches. I don't know that I can give that up. I grew up at the beach, it is very upsetting to me. I plan on keeping covered, and bringing my umbrella. My girls love the beach too. I wonder if it's time for me to move on to something else that would make me happy. The beach is a very happy memory. I won't be sunbathing anymore. I was cutting back the past couple of years. The headaches, puffy eyes, and joint pain all sound like lupus to me. Hope you figure things out...

  • The bloods come back normal but Lupus doesn't always show in bloods and because the specialist didn't know what was wrong with me he just came up with the first thing in his head and blamed the steroids but I don't know anyone who takes steroids and suffers with painful joints, banging head aches, puffy eyes and comes out with a rash on the forehead and under the eyes it would be all over your body if it was reaction to steroids

  • The other thing I was told to avoid was Echinacea for the same reasons as elderberry. I never seem to get ill these days - even when my whole family is sniffing, snorting and gasping with some horrible lurgie. I have put this down to having an overactive immune system - there have to be some benefits after all?! I too have post menopausal Raynauds and have always struggled with the sun even though I love it. I live in the far north of Scotland and hot days like today are very precious, especially as I'm low in vitamin D so I take supplements but am not quite sure I get enough. But today I wore a hat and scarf and just keep covered up as much as I can although my wrists are now turned up to the sun often because someone told me this is a very good place for vitamin D absorbtion! It must look like I'm a member of some kind of sun worshipping cult to the neighbours!

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