Hi, everyone. I have a question. I’m on prednisone which, as you know, is an immunosuppressive. Most everything I read about getting healthy discusses boosting one’s immune system. My question is, am I doing myself a disservice by boosting my immune system in order to get healthy? I know I need to eat healthy foods, but at what point is stimulating my immune system a bad thing? Thank you.
Thank you. I’ll read it now.
I liked the article. I try and read up on research as much as possible concerning the immune system.
Thanks for the article. Very informative.
I have a question: I was recently told my Lupus was in Remission, how come I still feel sick? What does that actually mean? I had a bunch of blood tests taken in April and was told it was in remission. Is that why you take blood test every six months? And how do you feel if its in remission? Please help me?
Good article, Ann. Thank you.
Amen! And then there's the folks who claim to me that they have a friend that was cured of lupus. However, when I ask if I could meet them, it kinda falls through . . . ? I do know someone in my LFA support group that is in remission, but not completely off meds. Smart rheumy.
jujubeee said:
Also, a smart rheumatologist knows that ANA is not an accurate measure of disease activity. Neither is sed rate. Everyone with lupus is different. Neither are complement levels. Sometimes wbc levels can be helpful and these tests can be helpful and indicate inflammation but they ARE NOT INDICATIVE OF DISEASE ACTIVITY.
If you are experiencing lupus symptoms you are not in remission. Period. You still need to take your plaquenil and other lupus meds whether they are immunosuppressive or methotrexate, cellcept, imuran, cytoxan, or anti-inflam like meloxicam. Any doctor who takes you OFF these meds because of your labs needs a knock in the head. Less symptoms just means your meds are working usually. If you are months without any symptoms then you can talk to your rheumie about possible remission and possibly lessening your meds, and you will always have lupus.
I hear way too often that when the tests come in low or neg ANA that docs think your fine, your either in remission or never had lupus in the first place. This is ridiculous. Remember that there are people with sero-negative ANA Lupus. Not all patients with lupus have low complement levels (some have high), not all patients have high sed rates either or high wbc's (sign of infection/inflammation)
I suggest if you feel you are sicker than you need to be then perhaps your lupus is not being treated aggressively enough. I had this problem and ended up having a TIA. I got another opinion, was put on cellcept (right med for me) and have been much happier and having much less organ damage issues.
HUGS, go with your gut..LOVE Julie
Your immune system is already over stimulated, it makes auto antibodies which attack your body, Prednisone is a strong immune suppressor & has severe side effects. The goal is to keep your dose as low as possible to keep the Lupus under control. Boosting your immune system won't help Lupus in fact it may make it worse. Make sure you talk to your Rheumatologist before you take any supplements, they may interfer with the effectiveness of your Lupus meds
I think jujubeee has the right of it ...treat the whole person and not just physically. Spiritually, emotionally, nutritionally all these combine to make up you. god bless all :)
Getting back to immune-boosting, it’s NOT a good idea in lupus! Vitamin D is specifically important to us (but it’s smart to keep it just within normal limits, not over-supplemented!) Other all-around immune boosting will make your lupus more active!
When it’s advertised so heavily, that’s the assumption of society at large that all disease is caused by foreign pathogens (viruses, bacteria, etc) as well as cancer being contained/prevented by a properly functioning immune system. Autoimmunity is a whole different ball game and general advice doesn’t apply! Plus, make sure you discuss ANY supplementation with your doctor, so they know about it and can manage potential interactions with prescribed meds (and perhaps advise you on its usefulness, but most MDs don’t discuss vitamin/supplement use.) There was a really helpful list of things “not to do” if you have lupus, from the LFA’s octor Q&A series I think. It said to totally avoid alfalfa sprouts and echinacea, and take it easy on vitamin over-supplementation, which I’ve heard other places is especially for Vit C, D, E and K (D, E, and K are fat-soluble, so you can’t just pee off extra, for one, but K will throw off your clotting and E can cause some icky side-effects but also has cause for caution in our condition.) A patient info page from Hopkins Lupus Center also agreed on echinacea and alfalfa also advised against melatonin. Guess we need other ways to address our insomnia… When I was trying it I did actually notice some flaring. Makes sense, after all it is a hormone… Naturally produced by the body, but hormones are produced by the body to do very potent things that affect the balance of everything! Know what else is a hormone? Cortisol! Our cortisone, prednisone, methylprednisolone are actually synthetic versions designed to affect less of the overall body response to cortisol and specifically promote the anti-inflammatory and immunosuppressive aspects. Taking “cortisol supplements” would be natural, but make you even more miserable and vulnerable than prednisone! Methylprednisolone is supposed to be the best-tolerated and least harsh on your liver, so I always recommend on this site to ask your rheumie for that. It’s available generic and not expensive. Here are the links on these things:
http://www.mayoclinic.com/health/vitamin-e/NS_patient-vitamine/DSECTION=safety
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
So, onto my perspective from my biology background, my time after college working on autoimmunity clinical research, and my time after lupus (unemployed and doing lots of reading when I didn’t feel well enough to be up doing anything!)
The frustrating paradox (well, one of many!) is that your immune system is simultaneously weak against foreign pathogens while it runs rampant your own body. These are likely actually related to each other, not contradictory, and the newest research in autoimmunity examines the overall immune regulation defects rather than the specific autoinflammatory reactions. It could be either of these, but it’s probably both:
A) The faulty regulation of our immune system goes both ways: some areas are hyperactive, some are hypoactive, and unfortunately the hyperactive ones are often directed at us! But remember every time you get sick? There’s a huge overreaction/backlash of many symptoms for something that hardly affects other people? That’s a sign that the initial immunity to protect you from catching it is too weak, and then the parts used to fight it once it’s established go overboard (including increasing auto-immune activity and triggering flares.) Vitamin D is thought to balance these out, but needs a lot more research since they used to think it was just for bone calcium and such.
B) The immune system (especially complement system!) gets depleted by all that fighting against our own tissues. This is why we see low complement (C3 and C4) in many cases of active lupus. However, inborn defects implicated in susceptibility to lupus include insufficient earlier parts of the complement chain of cellular action (such as C1a and C2), but that relates back to potentially leaving us overly vulnerable to infection, which overactivates later phases of immunity (cytokines and such), which depletes certain complement elements further (C3 & C4 mainly, but perhaps others we don’t get checked). And that’s just all in the “innate immunity” branch of immune function! (see below to the last long paragraph for more on the other major branch!)
Scientists are still smack dab in the middle of the maze on “answering” how it all works (as a biologist myself, I always viewed science as “learning”, not “answers”, which is just like the rest of life!) Still, you can see quickly how the elements of under- and over-active responses beget each other and arise from faulty regulation. You can also see how you wouldn’t want to further conplicate the chaos by adding every third nutrition promoter’s take on how to cure all ailments by throwing lighter fuel on it all! I stick with a moderate path of enough-but-not-too-much of the full set of vitamins, with special attention to but not over-supplementation of ones like Vit B & D. It’s actually better to lay low on C, since it’s an overall booster, but obviously you don’t want scurvy either! Getting the nutrients from foods is always the best policy, and keeping a varied diet helps cover your bases. Ann, who is in nutrition school, would be a great person to ask about these things! Especially since she doesn’t purport to “cure yourself naturally” with unverified practices and naively think it’s never coming back! (just like the discussion above of whether remission=cure. Nope, remission means enjoy it while it lasts and do everything you can to prolong it before the disease you still have acts up again!) The devil is in the details as far as treatments, and fortunately the new specific antibody-targeted therapies (monoclonal antibodies like Rituxan and Benlysta; you can tell them by the suffix of their non-brand drug name being -mab for monoclonal anti body, we abbreviate them as MAb in biology since antibody is Ab…)
As I was saying before, the immune system is immensely complex, with two major branches called innate immunity and antibody-mediated immunity, and each has many many sub-types of cells (antibody producers are B-cells and T-cells, but there are stimulatory T-cells, regulatory T-cells, multiple functions of B-cells… and then there are specific populations and devekopment stages of each type, distinguished by the specific surface proteins they express. Those are what the new “-mab” treatments target specifically i.e. the rituximab (Rituxan) I take specifically depleted all my CD20-carrying B-cells, which are immature ones. Benlysta acts on similar ones with a different specificity. The new research hopes to target activation of regulatory T-cells so they do their job better to control these renegade B and T cells that cause our autoimmunity, and there is also a lot of research going into how Vitamin D and various hormones play a role. The GREAT NEWS for us is that as the treatments get more targeted, we don’t have to suffer across-the-board immunosuppression (like Cytoxan, AZT, CellCept and all their nasty side effects!) Obviously we need to be able to fight invading pathogens just like everyone else (moreso than anyone else without the immune catastrophes that follow!) My guess as someone who knows a good bit about the testing process of drugs and also the pandora’s box nature of messing with biological elements you think will help, is that there will likely be highly effective, side-effect minimal therapies (based on finding the correct conbo of specific immune modulation with MAbs, nutrients, and other approaches) to manage ongoing lupus biology, not just symptoms, within the next 5-10 years (if enough funding is allocated for lupus and not just RA and diabetes, etc. LFA just sent out an email about taking action to support this, let’s all follow through!) I would speculate a “cure” that really reverses it and allows you to go back to your pre-lupus immune status of genetic susceptibility without the actual disease (giving you a chance to systematically avoid the environmental factors that combined with your genetics to bring it out the first time around: stress, sun overexposure, Vit D deficiency, certain medications, viral infections, inflammatory dietary consumption, to name a few!) will be on the 10-25 year timeline. All the more reason to manage your illness and stay within your limits of a balanced healthy life instead of overdoing it: this cure to halt autoimmunity would only stop active inflammation from causing more damage… But can’t ever undo damage that has already take place. So when I say pre-lupus immune status I do not, unfortunately, mean pre-lupus health and function 
One more reason to take charge, and to advocate for yourself when people try to get you to get it off your mind and move on with life despite symptoms. Of course enjoy your life, but remind them and yourself that you’re obsessively managing it so the cure will work as well as it possibly can for you when it comes out!
Whew, that was a long one! But this is complex stuff! A typical MD spends one quarter-long class dedicated to strict immunology, then also learns a ton more about the parts associated with fighting the infections they’re always battling. I’ve heard luous usually gets a single day of class, just a brief mention and superficial overview. This is why I caution that many primary docs are incompetent with it unless they try to learn it with you as you go (as all good doctors should!) Rheumatologists specialize in joints, so since we happened to complain about our joints first way back at the beginnings of understanding lupus, they have to beef up their immunology to help us. A lot don’t, obviously… Signs of failing to include “just take the anti-inflammatories and you’ll feel better if you stop worrying so much.” Or, “your tests are negative, no more lupus!” Find the ones who know and care to learn. My first rheumie knew very little about NPSLE but was totally eager to read up on the ideas and complaints I brought in. I just switched because I was lucky to have an expert on it right in town! (the Bay Area is a great place for medical care in general, but UCSF dedicates a lot of research into autoimmunity, and general recognition of immune system complexity is likely due to the need to address AIDS in such a major way. Even friends are pretty aware that autoimmunity exists; however, I always check their understanding with a question to them because more than a few think the AI in AIDS stands for Auto Immune rather than Acquired Immune (Deficiency Syndrome.) Not only do I get the chance to correct the notion that I have an even more devastating communicable disease, I also get to explain lupus and it’s treatment in a simple way using the comparison: “See, an AIDS patient has an insufficient immune system, whereas mine has gone overboard attacking my body itself. The treatments I must take make me immunosuppressed, which is akin to early or well-managed AIDS as far as vulnerability to infections. And each infection exacerbates the autoimmunity all over again.” Thst usually makes the point that this is big, difficult stuff without them being totally off track and judgmental! Try it out! And always make sure your docs know how important it is to continue learning; the research may not have a lot of funding, but it is gaining understanding pretty fast if you know where to look and how to interpret it.
Brynn
Brynn, I have a friend who is a nutritionist/naturopath type person. I have no clue as to the word for her. She has studied the use of herbs and supplements and has her own store. She has been cautioning her friends and customers about the overuse of Vitamin D. She said that she has no idea why so many doctors and others have started pushing Vitamin D so heavily but she is seeing a lot of over use. Ann, I know, you promote it and I am not questioning your use of it at all. For me, I have a lot of windows and I think I am out enough that I get enough sun but what are the signs of low Vit. D that either of you are aware of (or anyone else)?
This was a very helpful discussion:)
Thank you, Ann. More I have learned from you again. I will request the vitamin D level to be checked at my next appointment. Like I have said before to you and others.... you are all so knowledgeable and maybe, again I say maybe, I will catch on to all this someday. I did find out that my potassium is low and he hated to add one more thing to my long list of meds but after I got home I started thinking about my legs aching so bad and my husband has to take potassium for that reason so I am adding it to my regimen for a while to see if that helps. I sure hope you didn't think I was saying anything bad to you because I wouldn't. I admire you knowledge so much.
Gentle hugs, Reet
I find it interesting too, Ann. I am not really amused though. LOL I will be having it checked though.
Oh, contrats on your great career using your masters, Ann! I was confused about the break you took from moderating last fall being about school. But I guess that was 8 months ago now…
Yes, testing is definitely the way for Vit D. I don’t mean at all to say I don’t supplement… I take 1000-2000 IU/day (when I remember 
so many other pills to swallow!) to keep mine in range. When I first presented with fatigue, I tested insufficient (not surprising, had just moved to CA after a Seattle winter and spotty performance taking my supplements!) and she gave me a course of four 50,000 IU gelcaps (once per week), then recommended staying with 1-2k thereafter. My levels have stayed right in the range ever since, and get checked periodically but not every time I get labs (I think vitamin levels are more expensive tests.) I also take B-complex, Calcium and Multi, plus eat tons of dark green veggies and many colors of fruits & veggies! I even eat meat (usually lean poultry and occasionally beef, never pork) after 10 years vegetarian. Can’t do dairy, soy, corn, nightshades, dates, figs and bananas, but everyone in the US is probably better off without those first three… Hormone central for milk plus inflammatory fats, unless you get the ultra-expensive grass-fed milk, and corn & soy are the massively overused refined, soil-depleting, GMO big-agro crops with little nutritional value (corn), hormone-mimicking effects (soy) and inflammatory stimulation (both.) Too bad about those fruit/veggies on my list though
Is that consistent with your study/experience? Being in Seattle and SF we have a big influence from Bastyr University (Naturopathic) and Michael Pollan, respectively 
Plus my self-selected sources from online, where I pick and choose the biologically rekevant arguments of each the paleo nuts and vegan vigilants to make a sensible omnivorous plan (nothing against paleo or vegan, might work great for some people, but too extreme for me and too tough with all my intolerances! I do believe variation and balance are super-important, most of all in lupus!)
Hi, everyone. I’m so happy that my question has spurred such an interesting and informative discussion. I just finished reading all the responses and I’m so glad to feel surrounded by like-minded, knowledgable people. It’s truly a blessing to be part of such a caring community. Thank you, Kim
Kim,
Because lupus is our immune systems in overdrive, Prednisone is the fastest way get it under a bit of control until the other meds can take affect. I don't know what you are doing to boost your immune systems, but I would talk to my Rheumy as even natural supplements can affect the efficacy of your prescribed meds.
While many know a lot on this site, this really is a doctor question.
Hope you find your answers soon.
Hugs,
DeAnne
Hi Ann,
After reading your posts on Vit D, I asked my doc in Austin about it and showed him one of your articles. He tested my vitamin and mineral levels and then prescribed what I needed. I only pay $2.43 for scripts so this was economical. He sent me back to the lab for retesting at no charge to keep up so I didn't get too much or to little of any one supplement. Vit D, B12, Pottasium, Magnesium, Iron, and of course Folic acid have all been utilized. I've not noticed a difference but I do know that I have the proper levels.
Thank you for all your research and help!
Ang
Ann A. said:
Dear Reet,
Vitamin D is synthesized in the skin through exposure to ultraviolet B. Ultraviolet B does not penetrate window glass. So when you are getting sunlight through the window you are getting only ultraviolet A and you do not want too much of that. Depending on where you live you can only make vitamin D from sunlight during certain parts of the day and during certain parts of the year. If you are not outside at these time you are not synthesizing very much if any. Above the 37th latitude - in the US a line that runs just above Atlanta and below Richmond - there are months of the year during which UVB is not available.
What I promote is getting your vitamin D level tested. People with lupus often have low vitamin D levels.
The most recent research strongly indicates that in people with lupus vitamin D status is not simply related to but also influences the frequency and severity of lupus symptoms.
What are they symptoms of vitamin D insufficiency and deficiency? Well they strongly overlap with the symptoms of lupus. Fatigue, chronic pain, and even depressed mood.
Ann
I take vit d everyday because my levels dont even register on the tests without supplementing it.
My previous doctor had never checked my levels because he was so sure it was just the sle. Once I started on the D after a few weeks I did have a little more energy so I hope everyone has their d levels checked. feeling a little better :)
Ann A. said:
Dear Reet,
Vitamin D is synthesized in the skin through exposure to ultraviolet B. Ultraviolet B does not penetrate window glass. So when you are getting sunlight through the window you are getting only ultraviolet A and you do not want too much of that. Depending on where you live you can only make vitamin D from sunlight during certain parts of the day and during certain parts of the year. If you are not outside at these time you are not synthesizing very much if any. Above the 37th latitude - in the US a line that runs just above Atlanta and below Richmond - there are months of the year during which UVB is not available.
What I promote is getting your vitamin D level tested. People with lupus often have low vitamin D levels.
The most recent research strongly indicates that in people with lupus vitamin D status is not simply related to but also influences the frequency and severity of lupus symptoms.
What are they symptoms of vitamin D insufficiency and deficiency? Well they strongly overlap with the symptoms of lupus. Fatigue, chronic pain, and even depressed mood.
I take extra Vit D every day. I started when my Rheumy prescribed 50,000 iu's of it as it was that low. It is staying stable, but I know that it is important to take it regularly. Although I don't feel a definite difference I would rather not wait until I do. The old saying "an ounce of prevention, etc..."
Ann, thanks for all of the wonderful info.
DeAnne