Someone, please pass the magic wand to me

For over two weeks now i have had the pain in my upper right side,now i have the itching which by all accounts is sending me doo lally. Is there anyone here that also has Systemic lupus erythematosus? I had a bad lupus flare a couple of months ago, i was too wiped to eat properly - well actually i slept on and off for two months [ofcourse not good sleep where you wake up feeling refreshed and ready to go - no the catnap sleep which makes me feel depressed, anxious and lethargic] I am taking Ursodeoxycholic Acid along with various other medications but i couldn't take the one pescribed for the itchiness as it made me vomit if i ate anything. Early this year i was told that i was malnourished. I am so mentally and physically tired that i can lose days and the only reason i do try and eat a little is when my alarm goes off to take various medications but sometimes the tiredness gets the better of me. I have an old poorly dog Lily and she has been my rock. She wakes me at 6.30 each morning for a wee and we do some gentle exercise. If its a good day after i have eaten porridge and had some green tea i try and create something crafty or arty - i have a two hour window i try and make the best use of it. Lily knows when i need to sleep, she goes inthe garden and does a twenty minute poddle, chatting to the feral cats etc and then we go back to bed for a nap before medication alarm number two. Thus my day wanders on, every four hours i drink water,get up let Lily out, do some stretches and go back to bed. This has been my worst year, i have had two long hauls in hospital, my bone pain has increased and i have had two major Lupus flares but today i am climbing walls with the itchy skin.

11 Replies

  • Hello

    I don't have lupus or any symptoms of PBC so i can't answer your question but I'm sure someone on here can.

    Can i take it you also have PBC?

    I'm not long diagnosed myself, in fact i had never heard of it until my consultant told me i have it. The folks on here were a great help in the early days.

    I wish I had a magic wand to wave. if i did, believe me i would wave it. over everyone.

    I hope your flareup passes soon.

    Best wishes


  • Hi Julymoon

    I am so sorry to read that you are having such a struggle. I see only one answer and guess that many of us do not have the cross over to Lupus. I thought I would answer you though because I do suffer with the itch, well mine is a burning crawling sensation mostly on the arms but reaches up around the chin and cheeks. I was recently prescribed Naltrexone at 25mgs but found it difficult to tolerate and gave up after a week. This was quickly followed by a bout of sickness and diarrhoea and by some good grace the dreadful itching which I could no longer tolerate has reduced back to a manageable itch. When it get really bad I use ice blocks on my arms but for the most part having been recommended by the specialist I use a 2 per cent menthol cream. It is only temporary relief but any window of calm gives my mind a rest. I am still on the cholestyramine for the itch of which I take two sachets a day and continue with the URSO.

    I see that you say you eat porridge - I find porridge scouring and sometimes I feel unwell after eating it. Can you try taking all wheat products out of your diet for a month and see if that helps? There is a lot of talk these days about wheat intolerance. I eat a lot of fresh vegetables and some fruit (not too much because of the natural sugars and I am trying to lose weight). I find it odd that cooked porridge upsets my tummy but my regular breakfast of home made meusli does not. I mix dry porridge oats (Jumbo size) with nuts seeds and dried fruit.

    I hope you have woken this morning to a better day

    best wishes

  • Thank you for your kind reply. My diet is sparse, I eat a gluten free and dairy free diet. Oats I find a gentle food - I eat it in the morning with seeds and dried cranberries and fresh blueberries if available. Mostly I eat raw vegetables or very lightly steamed. I love fruit but many fruits I cannot tolerate. I have many health problems. Strangely you are the second person this week to mention Menthol cream, my Grandson also uses it. I am seeing my Gp today and she is brilliant but I take a great deal of medication and new medication has to fit in with blood thinners and all the other life long cage rattlers. I will let you know how I get on. Thank you again.

  • So sorry to hear of your problems, your life sounds terrible at the moment, I really hope that things improve for you soon. Your old dog sounds lovely, what a comfort she must be for you. Keep trying, it's the only way. we're all thinking of you.

  • Thank you for your kindness ,sometimes another 'voice' in the day makes life bearable.

  • Hi Julymoon

    So sorry for your pain!

    I don't have Lupus, but i do have MS, and i found when i took my MS drugs, taking Urso for the PBC made me ill, and vice versa. Both diseases cause extreme fatigue, and i simply could not raise what felt like a bowling ball head. I decided, after talking to my GP, to fight one disease at a time. As my MS is the relapsing/remitting type, i chose to fight the PBC. I also began taking prescription Vit D and omega fish oil with the Ursodiol. The difference was amazing. I began walking short distances, which after 2 years, is now 2 miles, (which my siberian huskey loves!) i have not had a MS flare-up, except that my hands still are goofy, but, hey, i am up and walking, and beginning preparing Thanksgiving dinner for 20. Life is good! I never got the awful itch, but i did have the rash and its itch, etc. I found reducing sodium and fat helped the rash itch, perhaps it could help your itch too? I have heard the PBC suffers are also prone to Celiac' disease, i wonder if that is why porridge might not help you feel better? Have you asked the Foundation for guidance? They help so many! My prayers and thoughts are with you, and hope doctors and the foundation can help you....

  • Thank you for replying and for your kindness. Lupus is in many ways a lot like MS with the flares and an awful lot of painful bones. I am housebound pretty much but I am trying to get help with this , it should make my life rosier. I exercise gently every day but I miss walking outside, sometimes my daughter invites me to go out and we walk in the woods with my Grandchildren - they are the best days. Brightest Blessing for your thanksgiving.

  • Cut out processed foods like hot dogs etc. I wasn't itchy and then I had a hot dog and was itchy the next day. All these chemicals in food get processed by the liver and are excreted with the bile. Unfortunately, with PBC, bile gets backed up into the blood along with the toxins. I eat oatmeal and oatmeal bread with every meal and get sun when ever I can, even in the cold. Expose your itchy areas in the sun. It works. I refuse to take any more drugs and ones that are available are hard on the liver or interfere with medicine absorption. Oat lowers cholesterol. It's even listed on the box of cheerios. They believe that it sticks to the gooey oats in the intestine and gets eliminated through the bowels. The drug cholestyramine is used to treat itching and it lowers cholesterol but also binds to medications. Eat fresh foods, not prepared. Read food labels. Stay away from foods that list preservatives and other added chemicals. Also stay away from high fructose corn syrup which causes fatty liver and leads to chirrosis. Try the oats, staying away from processed foods and get sunshine. Let me know if this works for you. I haven't been itching and haven't been too fatigued lately. :)

  • Hi Ginam, I hope you are keeping well and hope you have a good Christmas. It's 2.31 a.m and i haven't slept for nearly two days, i think nearly every part of my body either itches or feels like it is burning, my chest is wheezy and my bones hurt but every day i get up at six with my dog and our day begins. I avoid the sun it does not help the itch instead the burn runs through my veins like a train running late. My cholesterol is low-i never eat proccessed foods, i don't eat meat, i eat fish once a week. My diet is mostly raw foods, homemade soups. I cannot tolerate fat or sugar and i am gluten free but i do eat oats. One of my many Consultants told me that all i should eat was raw or lightly steamed vegetables, nuts and seeds and plenty of mushrooms and drink only Green Tea or water, and i mostly do except i also drink Peppermint tea and a have a cup of coffee once a day[my treat if you like]. I have a brilliant GP who listens well and looks after me, 2016 has been an unfortunate year health wise so my fingers are crossed that 2017 will be better. i hope it is better for you too, thank you for you kindness.

  • Hi Julymoon

    Just as i said, the friends on here have come up with some good ideas and also comforting words.

    Thanks all.

  • Julymoon, please, please see a naturopath or functional medical doctor. Find a good one who can help you turn a corner to feeling and getting better. It is possible. They can work along with whatever meds you take. Keep giving sweet Lily big hugs and kisses. She needs you as much as you need her. ❤

    Also do some research on low dose naltrexone (LDN) and Lupus.

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