Does Lupus improve over time or get worse?

The USA government has denied me disability because they claim my Lupus will get better within a 12 month period. I have Lupus, Sjorgrens, and Diabetes Type 1.

I was told that Placquenil is supposed to make my symptoms improve so much that I can continue working for years and years.

I get sick with every and anybody's passing coughs, I get low grade fevers, and I miss a day of work a month just because I am EXHAUSTED

So my question: has your Lupus improved or gotten worse with age?

I was diagnosed over 20 years ago originally, but I am 55 years old now and I feel terrible. And I don't think I have a chance of living more than 10 years with these 3 diseases.

Tell me how you are feeling with Lupus over the years please.

14 Replies

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  • 👣👣👣👣👣👣👣👣👣👣👣👣👣

    Hi Maitelady;

    I also am from the U.S., as for me, my Lupus has gotten no better. If anything it has gotten worse. From my research I have found you will not get better, there is no cure for lupus. It may be somewhat controlled as flare ups are not as often, but that is about the best you can do.

    I have SLE, (Lupus), I also have COPD, and malignant hypertension. The disability insurance company from where I was working filed for my SS disability it took only 3 weeks for mine to get approved in May of 2015.

    However, I do have a lot of issues that prevent me from working. Number 1, is my blood pressure, even SS told me I could not pass a physical to work anywhere. My normal BP is

    180 to 187

    Over

    110 to 120

    I have lupus issues that prevent me from working also.

    I don't know for sure but, I have been told, it is who and how the paper work is done to get disability. All i's have to be doted and all t's have to be crossed. I was extremely blessed by God to have mine approved the first time, and for it to be done so quick. The insurance company has their on attorneys that do nothing but file for disability.

    You may want to check further and get an attorney, if you don't already have one?

    I hope everything works out for you!

    👣👣👣👣👣👣Tiras👣👣👣👣👣

  • You need to appeal. Unfortunately, this can take in the vicinity of two years. You need to get a lawyer or there are some companies who will also help you. The good thing is you have more time to put together a case. I hope you have some way to live in the meantime. The problem is that if you work it means you can work.

    I went on temporary state disability in my thirties, and then I did get better. I got sick again in my late 50s. By the time I saw a judge for the appeal I was no better, and I had more documentation. I'm somewhat better now, but I'm almost 64 and I still don't think I could work.

    They don't make it easy. Good luck.

  • Hi Maitelady,

    I am sorry to read that your claim for disability allowance has been denied. Unfortunately, i am unable to offer you any advice as i am unfamiliar with how the benefits system works in the US.

    Have you been in touch with the Lupus Foundation of America for advice? I would recommend that you get in contact with them as they may be able to guide you in the right direction or offer you the correct advice. Here is their website - lupus.org

    Please do let me know how you get on with the Lupus Foundation should you decide to contact them.

    Best wishes,

    Hayley

    LUPUS UK

  • This UK forum offers more solid advise and people's personal hour it's an any American one I have found. Perhaps there is a good group out there in cyberspace - but I am not run across it yet.

    Thank you. I will contact Lupus.org again.

  • Lupus is a chronic autoimmune disease that currently has no cure. I take plaquenil and CellCept for my systemic lupus. I also have Sjorgrens and antiphospholipid syndrome. All are autoimmune diseases; it's very common to have more than one.

    No one knows how plaquenil works. It's used, off label, to help manage lupus flare ups. It is an anti-malarial drug. It was never intended to treat lupus. It's primary benefit is to reduce the frequency and duration of lupus flares, period!

    It's Standard Operating Procedure for the Social Security Administration to deny your first request for disability insurance. They want you to give up and quietly go away. Your best and fastest way to get your claim approved is to get an attorney who specializes in Social Security Disability Insurance claims.

    Your lupus is not going to improve or go away. Current research has shown that many autoimmune diseases, including lupus, have a genetic basis. Getting rid of lupus is akin to permanently changing the color of your eyes. It's not going to happen.

    Be well and keep trying,

    Tom

  • Excellent answer. That is exactly what I thought. Lupus never "improves"...well I suppose the government assumes that Placquenil is going to improve your symptoms enough to work. They are wrong. Yes you can work - for awhile, depending on symptoms AND if the Lupus hasn't attacked any vital organs - but over time - it wears you down permanently. I get pneumonia every year - from people coughing and not covering their mouths. I'm not giving up on my pursuit yet.

    I had an attorney - but he quit - because the government did not pay him his attorney fees - he turned my case over to a large firm (they push your case as far out as humanly possible - so they can get a sizable fee in the end. )

  • Tom hello. I am also on CellCept, and plaquenil I also have SLE lupus. I hate taking this med. I have now developed so much nausea along with fatigue it is unbelievable. I thought I was the meds but now with SLE I have developed adrenal issues. What do think of the meds and have they helped you?

  • First, let me say how sorry I am that you have Lupus (as well as other problems). I am a retired Dr. and also have Lupus. Unfortuanately, Govt Doctors often have no clue as to a disease they are making a decision on. THERE IS NO SUCH THING ANYWHERE IN THE LITERATURE THAT SAYS PATIENTS WITH LUPUS WILL IMPROVE IN A YEAR! Some patients will feel better, others will get worse. If you do suffer from Lupus and that can be verified by a Rheumatologist and are constantly having pain and unrelenting fatigue, please see him/her and ask for a letter to prove you are disabled due to the disease. Other Drs. can write a letter as well verifying you are disabled, i.e. internist, endocronologist, ophalmologist etc (the more the better).

    You should immediately call for an appeal to the decision and request what documents you need to verify your disability..........YOU MAY WANT TO GET AN ATTORNEY (that specializes in disability claims) TO GO BEFORE AN APPEALS JUDGE. Most people will win before an appeals judge. The Attorney's fee are paid for be the Govt...........not you.

    BTW: Sjogrens very often will occur will Lupus. The reason Plaquenil is a mainstay for Lupus is because it has been proven the drug will help to prevent a vasculitis as well as increasing the lifespan of a patient with Lupus. Just because you have the 3 diseases you present with does not mean you would be lucky to live another 10 years; if your diabetes is being controlled and you keep on top of any Lupus flares you could very well live another 20-30 years+!!!

    Hope I have helped a little and wish you the best.

    Dr. S.

  • Maitelady, I have to say I was wondering the same thing? I was diagnosed 6 months ago with SLE I am also on Plaquenil and Cellcept. But I also work as a nurse and have been on short term for about 3 months now with no improvement. I feel as if I am going crazy. I had to go on short term because of the same reasons. Picking up so many infections I pick up and fatigue so bad. I feel as if people judge me as being a slacker and not wanting to work, or I am just overreacting. I do have to ask you one thing have you had or seen a endocrinologist? I found out just recently that I with all this fatigue that I get as well as a lot of nausea that I have adrenal gland issues as well and that if removed may help with some of the fatigue? I am keeping my fingers crossed may be a least a little help? This is all apart of issues with Lupus and SLE.

    Good luck and hope to hear from you

    Bridget

  • From all accounts with all of the people I have encountered - you will feel better, then have bouts of feeling bad with flairs, with an infection of the lungs, with HAIR FALLING OUT, with hurting all over. I have found out that most of my all over pain is Fibromyalgia. It's true...all the intense soft tissue pain is stemming from Fibromyalgia and not so much Lupus pain - which I was told is more joint pain.

    Bridget - no body will ever understand your true misery. Nobody. I wished I could say "don't cry"...but really a good cry every once in a while is good - because the situation we share is not for the light hearted - yet everyone treats your situation as light - not fair at all!

  • Thank you so much for the encouraging words☺️ This is my first time on this site and living in Michigan it is hard to find people that understand, as well as even being a nurse as I am hard to understand that I have this and was one that never thought it was a real issue. Until now I have. 😢 Feeling so bad that I was so judge mental about people who said that they had fiber myalgia. Knowing now it is a true diagnosis. Not just a made up issue to blow off patients. So great to have support now!! Thank you. Bridget

  • So sorry for your situation. I hate to say this but I have been in a very similar place. I am, unfortunately for me, older than you. I'm 67and also have Sjogrens along with Primary Immune Disease and 5 or 6 other significant autoimmune disorders. All of this disease has caused a lot of organ damage so needless to say I'm screwed.

    So as far as your initial question goes, I'm sorry to say that my Lupus has really gotten worse. I used to get breaks between flares but not so much anymore. In general I would have to say that things have gotten worse for me. So sorry, but it doesn't mean that you will not get feeling better soon.

  • Exactly what I thought. You know I have 3 auto-immune problems - I am going to look up ALL of the auto-immune diseases and see what else I have.

    1 doctor just discounted my 3 diseases and said "well if you have 3 you probably have others but really the treatment is the same. (How brutal is that???? )

  • I think it would be a great idea to get checked for others. Not all autoimmune diseases are treated the same way and without treatment it could be dangerous to ignore them. You might suggest that your doctor order a few simple tests to determine your primary immune status. These are pretty basic tests but could be life changing depending on the results. Whatever happens keep us posted and feel better.

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