I have been crying all week.

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I have SLE  since 2013 or maybe earlier for the doctors were all so confused with my overlapping symptons. Rash face and body, fever, inflammation  and weakness. I am 62 yrs.old and the last chronic disease I found out about with me was Lichen Planus which is also connected with the immune system degenerating. I was put on Lisinopril 2.5 mg. and took it one tome and was in ICU for 2 weeks and rehad for 7 days in Dec. 2014. I almost dies for now I have severe medicinal allegies. I am allergic to Prednilisone but I am able to take Dexamethasone. Now I have a round pie face and  lots of extra pounds.  I been handling this ok, just ok. But this week I can not stop crying. I look in the mirror and feel so ugly and I have always been  mindful of my weight. I only take 1 1/2 mg. aday for inflammation, knots and swellings even my lips. My lymphs in my neck are outrageous. I go to a Hematologist, Kidney Specialist, Rheumatologist and Dermatologist. They say I am unique, yep, lol thats me.  Oh also I have PTSD since my 40's. , social anxities and I just want to share my story and thank you all for such a kind place to share.  It is lonely with Lupus and now I feel  there are others who understand. Thanks. 

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  • Posted

    Hi maylasha06851

    I have been suffering with inflammation in shoulders, upper arms, top of back, hips and buttocks..i have no swellings or redness or body rash..but I do get a rash across my cheeks and nose. I have had this for the last two months..doc sent for blood work and it came back with positive inflammation and borderline lupus meaning I have to be referred to a rheumatologist to get an absolute positive diagnosis for lupus. However, my doc says my symptoms mimic Polymyalgia Rhuematica because the pains are worse in bed and in the morning for about an hour then the pains eases off. She has hiven me prednisilone 3 x 5mg every morning. I took it yesterday morning and couldn't sleep last night was this your experience on steriods? Also my doc says to ring her friday to let her know if the pains have gone because apparently if it is Polymyalgia Rheumatica the pain will go by friday. I still have pain but it seems to have calmed down..was this your experience with steroid....i know you mentioned you were allergic to prednisolone......i would love to get your experiences with the steroids you have been prescribed.....

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    • Posted

      My exerience with Prednisolone was swelling of face and tongue, hives and slow breathing. I only took it once for the Lichen Planus yeas ago. I am on Dexamethsone and it does keep me awake. I pass out...lol....not go to sleep at 3p and sleep to 9a. I have been ask, do you ever sleep.  It has become a routine now after a year or so but at first I hated it when at normal hour everyone was snoring and I was reading or listening to music to sleep by from Youtube.  Waterfall, raindrops, ok, did not work for me, relaxed me more but no sleep. But with my rountine and only me, hubby and Yeager, our little dog it works out. The Dexameth. has but a lot weight on me. 2014-2016 I have gone from 181 lbs to 215lbs.  Yep!!!    But I have lowered my dosage with the doctors help but everytime I get to 1 1/2 mg. problems start to increase and I have to go back up a mg. or so. Never get to that 1/2 mg and off. I could show you some horror pic of when I am under attack. Balloon lips. Swollen neck glands, rash on torso facial redness, I had joint swelling and pain, numb feet and arthritis in my hands and I love to crochet. Now Mon. appt with Kidney Spec. blood and protein in urine, hope it is just a nasty UTI.  I was not much help but I like to share. Take care suga. Hugs.
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  • Posted

    Hi darling you do sound in a bad way. First anxiety is common, are you able to sleep? If you aren't getting enough sleep your GP must address this. Next I'm assuming you have aneamia, how do you cope with this do you take folic acid and iron plus multi vitamins. It sounds to me as if you have uncontrolled Sjögren's too. Then steroids while are beneficial in the short term aren't wise as a long term solution. Has your Rheumy tried you on ant Lupus medication. If so what has he/she given you? Are you a member of Lupus UK or the BSSA? I do understand how poorly you are but I really do feel you need to looked over by a multi disciplinary team. Unfortunately there is only one hospital that can do this and needless to say it's in London and private! Has your Rheumy ever tried you on injections as they go straight in and thus don't upset the stomach. I inject Methotrexate every week. I'm not quite sure why you have PTSD did something dreadful happen to you in your 40s?
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    • Posted

      I have aproblem with my sleep. But I am allergic to 20 diff. meds and carry a special card with them listed and and I am 1000mg of Cellcept in am & pm..  I take a multivitamin but not iron. I will ask my Rheum.  She subscribe them for the first meds for Lupus but change the prescript. to Cellcept and told me to just put them up. My labs do not show a lack of it. But I will mention it but I will not be so fatiqued. I am not a member of any Lupus org. this is my first time at discussing it with anyone outside family and medical staff.  I have GERD and take meds for my acid reflux so it helps with the other meds upsetting my stomach PTSD.... I will just say for this is public, I was attacked, raped and physically beaten with 2 broken jaws and concussion. Left for dead. Thanks for your concern and kindness.  I will look up the Methotrexate.  hugs.
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  • Posted

    Youve really been in the wars, with a very bad reaction to initial med, l have allergy to penicillin with itchy swellling and passing out, as with a few other meds l,m sensative to, this started 30yrs ago along with severe allergic rhinitus. Few years later started with intersticial cystitus symtpoms took years for diagnoses but med did help, Last couple of years fatigue, assted other symptoms, recently severe shoulder pain and wrist.now also face rash, forehead also cheek bit swollen with it

    Waiting to see Rheumy. Seems one immune condition isnt enough to get, leads to others for many.  .l know steroids arent used easily and can do well for symptoms, but known side affects are increased appetite, weight gain, round face, more active, l cant say to you your appearance doesnt matter, as l and most would be the same, it does affect us, but no one half decent would judge you on that, knowing its essential to help your symtpoms at present time.  Youve gone and are going through a lot and have a right to have bad days and tears, but not a way anyone wants to be unique, but despite all youve kept your sense of humour, and l,m sure will get by the bad days, but support helps. l,m sure youve heard and read plenty about immune boosters, re food alternatives therapies. Sounds like Pam as the practical experience of Lupus and advice that could help.  Typical the best team to see are private and a distance away, could you discuss that with gp or consultants, l,m sure theyre able to refer to private places, lve been to one locally a few times, through nhs, for mica bacteria, and gastritus.

    Worth pushing them as much as your able, knowing its not easy when your feeling ill, maybe someone can go see docs with you for back up.

    best wishesx

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    • Posted

      Thank you so very much for your understanding and kindness. I am going to look into some of your suggestions. My husband goes with me to some of my appts. and talks to the doctors. I was in a coma in 2014 for 10 days and sit by my bed and even looked up info. that helped my doctors.( ventillator of trache) which was good for it increased my recovery and lessen pnemonia chances. It was a induced coma and since then I have been fogetful and can not express myself as well but hey I'm alive!!!    You are a gem!!  Hugs.
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    • Posted

      Well, l know how l feel, with my immune probs, intersticial cystitus, gastritus on onprazole, and allergies, last night a horror with shoulder wrist pain, youi wonder. Still not as bad as youve experienced, touch wood it wont bring me simular experiences ever, amazing what we endure adapt to, its great youve a supportive caring husband, we all deserve the best care we can get it, be it from partner, family or medicial profession, but we dont always get it, sometimes a battle, so hope your husband can help you get the best on offer for your multiple problems, 

      unique, we dont want to be, prefer normal.  Take care x

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    • Posted

      Thank you very much. Yes, I am blessed to have such a husband and after my  divorce I said I would never marry again. Glad I ignored my own counsel that time. He is a true country guy with good home values. I like that. But I also watch over him for he is a diabetic and the past year has been hectic for him also and I been like a mother hen over her chick when I am able. I went to the site and went I get a chance I will look more into it. Friday was a bad day. Take care and I wish the best for you and your health. Keep me posted.  Hugs.
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    • Posted

      l hoped l,d find a good man second time around, thought fate would send me one, it didnt, but l wasnt proactive either, so now on my own, means youve only yourself to care for, do for, but a lonely existance,for many.My son is diabetic, has been since he was 22yrs, now 38yrs, and lives 2oo mile away in norfolk, l worry as l know he,s not strict with his diet, drinks far too much pepsi, puts weight on, gets the odd hypo, and yes l,m def a clucking hen over him, for the good it does, most brushed away, and pleases himself, but l know it does mean something to him that l,m concerned. Makes a change from worrying over myself, and today not too bad, just very tired, but pain minimul, small mercies, hoping Lillian above will post, as she was quite unwell with the steroids, l guess we all react differently to meds, as you know well enough, yours the extremes, lve passed out with them,, thrown up, but ending up in icu a new level.  Well the sun is out, but doesnt last long, hope it warms up a bit, even if just going into garden to sit or potter is nice, l think it helps to be out in a little sunshine, if hot in the shade or evening. Going to get a drink, l get gagged often, so hope all have a decentish weekend, take care  lyn
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