While prednisone and solumedrol makes makes us feel so much better in the beginning I can tell you in the long run the toll they take on the body it is not worth it! I now have Addisions Disease from...
Thank you for this input Lynnwood. That’s quite interesting. My labs in January and March showed increased inflammation, my numbers were actually higher than ever. I’m sure things are up now as well...
I have experienced sudden partial hearing loss in my left ear. It came on while I had a cold and I thought it was an issue related to that, but when I went to the doctor my ears checked out fine. I...
Tinabones, My husband is in stage 3 kidney failure and has times when he has bad breath. I have had him ask our dentist to check to see if there is a issue orally, but his teeth and gums are fine. I...
I totally understand what you’re saying Lynnwood. My lupus has been somewhat under better control in the last 6-9 months than it has been in years, I’m thankful for many reasons. One of which is the...
Stacie The cold does affect us, but in a different way. We can tell when a cold front or storm is coming because our bodies will start hurting usually or we might get a migraine. While it is hot here...
My son began exhibiting symptoms associated to Lupus and RA as young as 7, our pediatrician at the time had the same attitude. I had to fight and fight with him just to test my son because I knew all...
I have not tried Elixinol, what exactly is it? I tried looking it up but did not understand if it is a CBD oil or not? I am very leery of trying just any CBD because they need to have less than 1%...
I was on cellcept for several years. I did have a few occasions of sporadic diarreha,but nothing that interfered with my daily activities. I never had any kind of rash or skin issues. It sounds like...
MinnyMouse, I too take CBD oil (sub-lingual) as recommended by my rheumatologist. You are not kidding about how expensive it is to get a good quality oil (yikes)! I currently take Leef Organics and...
Gabapentin is a horrid medicine as far as I’m concerned, I had an allergic reaction to it. Made my face swell and just made me feel terrible. I’m sure it helps some people, I’m not one of them...
This sounds like it’s fibromyalgia or at least what I’ve experienced as such. Are you taking anything for fibro pain? Not much really helps it except warm epsom salt baths from what I’ve experienced...
I too am sorry you had to make the decision to stop working Darla. Like Lynnwood and many others I’m sure, no longer working was one of the most devasting things I faced. I truly enjoyed my job and...
I know you are frustrated, but unfortunately you’re asking a question none of us here are qualified to answer as we are not doctors. I can tell you that lupus is not diagnosed by a positive or...
Darla, Does your company offer long term disability? I went out on FMLA and then filed long term disability once my doctor told me it was in my best interest to stop working because of the toll it...
Thank you for the information Bill. I am already on IVIG infusions, have been for some time now. I’m not as concerned about the platelet count as I am that the RBC, WBC, HGB and HCT also dropped so...
Darla, Doctors must conform and submit whatever paperwork is requested from them by Social Security in regards to a patient. Are you applying for SS on your own or using a disability company or...
Thank you Lynnwood. Yes, I am on massive immunosuppressants. Weekly Benlysta sub-q injections, IVIG every 28 days and I was on cellcept twice daily until these results. I am hoping that adjusting my...
Hello All, Have any of you dealt with a blood disorder or cancer as a result of lupus or medication you have been on to treat your lupus? I have tried to remain calm and not worry about the call I...
I used a disability assistance company when I applied. They handled all of the paperwork, obtained all the documents from my doctors and dealt directly with Social Security, I never had to speak with...
Hello, Welcome to Healing Well. There is a lot of good information here, as well as great people who are willing to help out and lend support. Sorry for your diagnosis, but glad you found the answers...
Some medicines take awhile to get used too. I personally have not had a problem taking my cellcept on an empty stomach, however, I have had issues taking steroids (prednisone) on an empty stomach....
You’re correct GreenBeans, I have never been on high doses of daily prednisone, usually 5 or 10 mg. I think the kicker for me is I do receive 100mg solumedrol when I receive my infusions. As a result...
Sorry you are experiencing additional issues on top of your Chrohns, it can be extremely daunting I know to try and relay to doctors what your are dealing with is different in relation to your...
For your Rheumatologist to ask to see you every 3 to 4 months is not uncalled for, that is normal protocol for lupus. A good specialist does not need to find reasons have patients come back as most...
Amafi, Sorry you are still experiencing issues and have new symptoms. Unfortunately we cannot advise you what you should or shouldn’t do, that would totally be up to your doctors. Remember lupus is...
I have nerve damage as a result of lupus attacking my brain and nervous system at which time my diagnosis was changed to Neuropsychiatric systemic lupus erythematosus NPSLE. For me it began with...
NanaShelli, The AVISE test is rather new so I’m not sure how many members may have had this test. I was diagnosed 21+ years ago, so I do not have any experience with this test, but I’m glad to hear...
Sorry you are experiencing issues and feeling poorly, hopefully your specialist can figure out what is going on. None of us here are doctors or medical professionals so we cannot advise if you...
Hi Lynnwood, Sorry to hear you have to come off of your Trazodone to have the test done. Sorry as well that you’re still having issues with vertigo, it’s a horrible feeling for sure. I took trazodone...
I too took Imuran 10 to 12 years ago, so my recollection of side effects are vague. I was on Prilosec at the time I know because of on going stomach issues related to lupus. Imuran didn’t help me...
Okay, that’s good to know. Yes, I get terrible migraines, I have all my life. I guess the reason I didn’t get this reaction last time was they ran the infusion real slow over 2 days, I’m going to...
For those on IVIg, what if any side effects have you had? I just restarted my infusions again. Had my first one on Thursday and woke Friday morning with a wicked headache, so bad that I could not...
Yes, Lynnwood that is exactly my understanding as well of refractory. I had found this article when I was doing some research. We really need another medication to make it out of the trial phase,...
I saw my rheumatologist on Monday and he told me he is classifying me as “active refractory disease” I was taken back because I did not know what this really meant. He said that essentially he’s out...
I’m so sorry to hear of Butterflake’s passing. I had wondered recently how she was doing as I remembered her posting she had a been diagnosed with a brain tumor....
Bill, Thank you so much for sharing your story and the information regarding polymyositis with me. I have had lupus NPSLE, Sjogrens and raynauds for 22 years. Our father had Crohns, RA and possibly...
I have been having extreme hip pain that goes down my legs for months now, as well as back and neck pain. I chalked it up to lupus, RA and fibro, which it very well may be, I figure it is...
I do not have MTCD, but I’m just curious could you not contact the Children’s hospital where you were being treated and ask them for a referral since you are now 18 and no longer under their care?...
I would agree with Lynnwood. Speaking from personal experience of having a diagnosis of 22 years now, as difficult as it is and as much as their words hurt there comes a point you have let the words...
I do remember Carol. We conversed back and forth for awhile. I’m sorry to hear about her passing. Thank you for passing the information along Lynnwood....
I had my ketamine infusion on Wednesday and all went better than expected. I have to admit after all I read online I was very nervous going into it that I might have hallucinations or nightmares...
Skeye You are correct most lupus patients would not fall into this realm of needing Ketamine treatment, I unfortunately have Neuropsychiatric Lupus, whereas my disease has affected my brain and...
Skeye, I am so happy to hear that with the help of Ketamine you have regained quality of life, that is very encouraging! Thank you for this wonderful wealth of information! This gives me some great...
Skeye, Thank you for your response and for the link to the additional information. I have lived with pain for many, many years, my hope is with Ketamine to eliminate some of the medication I am on,...
I have extreme nerve pain on the right side of my body caused by lupus. My Rheumatologist has recommended I try Ketamine Infusions to see if it will reset the pain resceptors in my brain. Has anyone...
Some people react to prednisone differently than others so it is hard to say how quickly you will lose weight. Try to avoid carbs, it will help you lose weight faster if you do so. I know some people...
Butterflake, My prayers are with you that the biopsy is benign and can be shrunk with chemo and radiation. Sending prayers, gentle hugs and good vibes your way....
Oh Butterflake, I’m sorry to hear you’re back in the hospital. My thoughts and prayers are with you. Please keep us posted....
Oh my goodness, I’m so glad you knew even though you weren’t running a fever something wasn’t right and you went to the ER. Happy to hear things are back on track now and you’ll be going home soon....