Newly Diagnosed and Questions -Help!

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cmmusiclover
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted 11/18/2017 6:45 AM (GMT -6)   
Greetings! I am newly diagnosed, and after a brief summary of my experience with Lupus so far, I have some questions that I would LOVE answers to! Sorry if its long. Please just skim over the intro explanation and skip to the questions if you don't feel like reading. It's important for me to get answers [smile]

As I said, I am newly diagnosed with Lupus - just today. My doctor said that my Lupus is the kind that is causing problematic symptoms that have severely affected my daily life, but is NOT attacking any organs (like the kidneys). I have positive ANA and various other positive Lupus and Sjogren's related tests, as well as chronically slightly low White Blood Cells.

My symptoms came on very fast: Extreme and debilitating fatigue, pain in joints and muscles, frequent fevers, many, many infections/viruses (one after another), dry eyes, canker sores and nose sores, rash in sunlight, sun/heat sensitivity, lower back/shoulder spasms, small things tire me out VERY QUICKLY, among other things. One day I was working 10-hour shifts and preparing to attend an Honors College, and the next I began experiencing symptoms that worsened over a few weeks and resulted in me quitting my job, withdrawing from school, and moving in with my grandparents temporarily to rest and get help.

Here are my questions:

1.) Today my doctor has prescribed me Plaquenil. This is the only med he prescribed me. Is it normal to be on only one medication? Are there any others I should ask about? Will this medication help my symptoms, particularly the fatigue, pain, and easy exhaustion?

2.) I read online that garlic, red meat, and alfalfa should be avoided if you have Lupus. Is this true? Has anyone experienced benefits from avoiding these, or consequences from NOT avoiding them?

3.) My doctor said that my Lupus "wasn't the kind that is attacking my organs, but is very symptomatic". Does this mean the Lupus will likely never attack my organs? Like I won't need to worry about Chemotherapy, kidney transplants, immunosuppressant treatment, etc?

4.) Are there any lifestyle changes I should make to ease symptoms and keep them minimized long term? Are there any vitamins, supplements, or herbal remedies that are good for Lupus symptoms or maintenance (living with Lupus)?

That is all I can think of for now. Sorry for writing so much! I really hope somebody reads all of this so I can get some answers from someone with experience!

Thanks,

CM smile

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/18/2017 8:22 AM (GMT -6)   
Great questions! I am short on time right now, but will be back this evening or tomorrow to answer.

In the meantime, read the Lupus 101 post - it may give you some of the answers you are looking for.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 11/18/2017 7:32:38 AM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/19/2017 8:51 AM (GMT -6)   
cmmusiclover said...
1.) Today my doctor has prescribed me Plaquenil. This is the only med he prescribed me. Is it normal to be on only one medication? Are there any others I should ask about? Will this medication help my symptoms, particularly the fatigue, pain, and easy exhaustion?


Plaquenil is a disease suppressant, and takes 2-3 months to build up in your system. It's supposed to stop disease progression. For most of us, we don't notice that it's doing anything until we try to stop it - although some people do notice improvements while on it. Often other meds are used in addition, such as Prednisone for inflammation (inflammation can cause fatigue), then either immuno-suppressants lilke Cellcept, Imuran, or MTX for more systemic symptoms. It's hit-n-miss which of these 3 will work for any individual patient. If none of those does the trick, there is IV Benylsta - I think there is another IV med as well.

In general, I don't recommend asking about specific meds until you've given the Dr time to offer them. That is, "I'm still having xyz symptoms, what can we do?" Then if the response doesn't include any meds, you might ask about them.

Sometimes the exhaustion is because we aren't getting "deep restorative sleep". You Dr may suggest a sleep study. When mine found nothing wrong, my Dr gave me a sleep aid, which of course I thought was NUTS, I was already sleeping 12+ hours a day, plus napping! And I thought I was sleeping well. But with the addition of Trazodone, I actually sleep more deeply for a shorter amount of time and feel much better.

cmmusiclover said...
2.) I read online that garlic, red meat, and alfalfa should be avoided if you have Lupus. Is this true? Has anyone experienced benefits from avoiding these, or consequences from NOT avoiding them?


I've been eating plenty of garlic and red meat all along without incident. Don't eat legumes because 1) I hate them and 2) it's suggested that Lupus patients have physical allergies to them.

Check out "The Lupus Book: A Guide for Patients and Their Families", by Dr. Daniel Wallace. The book is often referred to informally as "the Lupus Bible" by patients and Drs alike. He is the premier SLE expert in the USA, and has also written a version for Clinicians. I believe he's written something about Sjogren's Syndrome as well.

cmmusiclover said...
3.) My doctor said that my Lupus "wasn't the kind that is attacking my organs, but is very symptomatic". Does this mean the Lupus will likely never attack my organs? Like I won't need to worry about Chemotherapy, kidney transplants, immunosuppressant treatment, etc?


Lupus, unfortunately, is NOT a predicable disease -- it can do anything at any time without rhyme or reason. Some of our meds are technically chemo, but not at the huge doses used with cancer. Don't let your worry get ahead of yourself, no sense in wasting energy on things that may never happen.

cmmusiclover said...
4.) Are there any lifestyle changes I should make to ease symptoms and keep them minimized long term? Are there any vitamins, supplements, or herbal remedies that are good for Lupus symptoms or maintenance (living with Lupus)?


Again, check out Dr Wallace's book. Otherwise, I suggest eating healthy - avoid processed carbs & sugars, focus on clean protein, fruits, veggies. Regular mild exercise, regular sleep/wake times. Avoid stress as much as possible - it's a terrible trigger for Lupus.

Keep in touch!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 50
   Posted 11/20/2017 5:15 AM (GMT -6)   
Actually, you should avoid garlic & alfalfa . From Johns Hopkins Lupus Center:



(1) Sunlight

People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.

(2) Bactrim and Septra (sulfamethoxazole and trimethoprim)

Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.

(3) Garlic

Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.

(4) Alfalfa Sprouts

Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.

(5) Melatonin and Rozerem (ramelteon)

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.

(6) Echinacea

Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.

cmmusiclover
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted 11/20/2017 7:49 AM (GMT -6)   
Thank you guys both for that wealth of helpful information! Its good to hear from others who are experiencing it. I've actually had a really bad skin reaction to BACTRIM since 2012, so I already avoid all sulfa drugs ;). I have been avoiding alfalfa, garlic, and keeping a balanced diet low in saturated fats and refined carbs/sugars. I'm on several forums, and a LOT of people have had bad reactions from alfalfa/garlic and faired better symptom-wise with a diet similar to the one I just mentioned. I didn't know about the melatonin and echinacea though, so its good to know!

I do hear that a lot of people are on prednisone for symptoms. I see my Rheumy again in six weeks. I think he is waiting for the most recent labwork to do anything else, but if my symptoms are as bad as they are now I will mention it to him and see if he suggests another med (like prednisone, which seems to be what most people get) temporarily.

Right now I'm in so much pain and am so exhausted that I sleep about 20 hours a day. Hopefully once symptoms ease I can have a better sleep/wake schedule and get back on a regular exercise schedule, likely an altered version to the one I was on previous to the onset of symptoms, which was a combo of cardio and strength training.

I do have one MAJOR CONCERN I could use suggestions for:

The only thing that is really overwhelming to me is the sunlight problem. I do react pretty severly to the sunlight. I get the usual rash, but I also get extremely fatigued (usually when its hot) and then sore muscles... right before a full flare that has me in bed for days. I came from an abusive family, and outside of my terminally ill and financially poor grandparents whom I am currently staying with, I have absolutely NO support. I graduated high school from a homeless shelter, went to college on scholarship, and worked in the summers. I never had a car because I never could afford one, and most certainly cannot now. I walked EVERYWHERE. Then I got too sick to do anything. Now I am getting diagnosed and treated for the first time. Once I get stabilized on medication and relief from symptoms, I plan to go back to school and work (summers). However, because of my desperate financial situation, I will still be having to walk most places, and wait in the bright/hot sun at bus stops for further out destinations. I feel totally stuck. I read in 6 or 8 different places that you should avoid sunlight, especially 10am-4pm. If the sunlight will cause flares, (it always made me much worse in these past few months), then how will I ever be stable enough to continue school and work? Even if I get stable now, if I want to work or go to school or go ANYWHERE, I will have to walk and wait at bus stops (I have taken buses MILLIONS of times, and buses don't come at predictable times and don't wait, so it's not like I could wait somewhere cool until I saw it coming. Buses have to see you ahead of time to know to stop). My close friends are doing ministry work out of the country and I don't have any other family who could help. Am I literally stuck? Does anyone on here have suggestions? How can I live my life? This is one thing that is REALLY freaking me out. Most people have the resources they need, so if they get Lupus its not a concern. They can drive most places and wear sunblock and hats during the rare occasion that they have to be in the sun. But there is no way for me to afford a car and insurance. Colleges and jobs and bus systems wont work their schedules around when the sun isnt direct for me to get to and from places. It was about 40 minutes total each way to get to and from the preschool I worked at this past summer, between walking and bus stops in the sunlight. Not to mention playground time with the kids. How will I ever survive? IS there something I can do? I feel like since Im too poor for a car, and too sensitive to the sun, I will never be able to go to school or work. This scares me. I am intelligent and driven, I want to live my life. Does it have to be like this? Is there anyone on here who experiences this who has ideas?

cmmusiclover
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted 11/20/2017 7:52 AM (GMT -6)   
*I meant 40 minutes each way in the SUN, plus the time I was on the buses (about 70-80 minutes). So two hours total per direction. It was quite a treck to work - my days were painfully long. I worked 10-hour shifts, walked and waited at bus stops, and spent over an hour actually ON the buses as well. I loved my job, but my pay was too low for the cost of living in the city and my days were brutal because of the commute via walking and public transit. Im sure being in the sun all that time made it a million times worse though.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/20/2017 8:18 AM (GMT -6)   
Many of us use clothing from Coolibar and other similar companies that is treated with sunscreen, along with umbrellas and hats. Unfortunately the clothing is expensive, but I hear the coating lasts for a long time so maybe it balances out? Often we end up low on Vit D and take an over-the-counter supplement.

I'd forgotten about the sulfa-drugs, yup, have a definite reaction to them!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 50
   Posted 11/20/2017 10:51 AM (GMT -6)   
I have found most clothing from Coolibar and other companies plain and/or just plain ugly and ridiculously priced.

There is a product called Sunguard that washes 30 SPF into clothing. Just throw it in with your regular detergent. Supposed to last through 20 washings. You can buy it here:

http://www.sunguarduv.com/

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 238
   Posted 11/20/2017 3:55 PM (GMT -6)   
Welcome to the forum. I think Lynnwood and Tinkerbee covered everything in great detail! I would recommend that if you are experiencing bad symptoms that you put a call into your rheumy and request prednisone. It has side effects but when I was flaring badly it helped immensely. I started with a Medrol dose pack and within 36 hours my joint pain was completely gone. My pain had gotten so bad I couldn't turn door handles, pick up a coffee cup with one hand, I had trouble walking, etc. After the dose pack, the pain came back pretty quickly so I went on 20 mg of pred for 3 months and slowly tapered down. For me, the pred is the only real relief I get when in a flare. Warm/hot baths with Epsom salt helps as does a heating pad but it's on a temporary solution. Hope you feel better soon!
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued
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