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Old 03-29-2009, 07:50 PM   #1
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Triciah614 HB User
Lupus & Recurring Illness

Hi to all. I have posted on here a few times, especially in the beginning stages of being diagnosed. I am glad to say that the plaquenil kicked in after about 6 weeks and my pain was immediately relieved and continues to get better with time. It took a little bit longer for my fatigue to go away though. The meds didn't start helping with my fatigue until about 10 weeks of being on plaquenil and gets a little better with every week that passes.

I have been having recurring illnesses. Since I started plaquenil, I have had a recurring throat infection for 8 weeks and have had two really bad sinus infections in the past 5 weeks. I also have 4 other infections going on at the same time as my sinus infection. I was wondering if anybody else has experienced recurring infections? If so, does anybody know if it's from the lupus and our inefficient immune system or if it's from the plaquenil? Just curious and any response would be appreciated.

Thanks,
Tricia

 
Old 03-30-2009, 08:50 AM   #2
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Re: Lupus & Recurring Illness

Hi, I was diagnosed with Lupus 4 yrs ago and with Lupus your immune system is all out of wack and some of the medication used to treat Lupus such as Plaquenil suppresses the immune system which makes it harder for your body to fight off germs, and infections. So the Plaquenil doesn 't actually cause infections it hinders your ability to fight infections. I take Plaqunil and a couple of other immune suppressants and have had similar problems that you have mentioned. I wash my hands alot, use a lot of Lysol and germ-x. Try to stay away from people with colds and runny noses, etc. I' ve often referred to myself as a germ magnet so I try to avoid as much as possible. Hope I helped. Chat with you soon, BB.

 
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Old 03-30-2009, 09:46 AM   #3
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Re: Lupus & Recurring Illness

Hi
I completely agree with blessedbeauty. After I got diagnosed with lupus I was immediately started on plaquenil. It wasn't until my doctor tripled my original dose that I noticed the inability to fight infection. In a period of about two months I had three urinary tract infections, the chicken pox, a liver infection, a sinus infection, and the flu. My rheumatologist when confronted about this said that plaquenil works as a suppressant of the immune system which lowers the ability to fight infection just as blessedbeauty said. I now stay away from anyone who has the slightest runny nose and use germx religiously. It's really helped for me. Hope your doing better and hang in there
-Erica

 
Old 03-30-2009, 10:21 AM   #4
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Triciah614 HB User
Re: Lupus & Recurring Illness

BB and Erica - Thank you so much for your responses. I was beginning to feel like a hypochondriac!?!?! I went to the doctor and he listed 5 secondary infections in addition to a lupus flare up as my diagnosis.

It doesn't help that I am a substitute teacher and around sniffling kids every day. I have been filling in for a teacher on maternity leave since February and I know I caught everything every student had!! My rheumie suggested that I find another job due to the stresses of a substitute teacher and the constant germs the children carry around. I thought I would be able to handle it since I love teaching the children.

I appreciate both of your responses and am happy to hear that I'm not just going crazy and it's not in my head. Take care and best wishes to both of you.

Tricia

 
Old 03-30-2009, 07:42 PM   #5
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watoozie HB User
Re: Lupus & Recurring Illness

I have been on Plaquenil for almost 4 years. I have Lupus and Sjogrens. It took a good 4 months to reap the benefits of Plaquenil, but it sure helped with my symptoms. Plaquenil is a Malarial drug, but is used for Lupus, RA, Sjogrens, and I'm sure a lot of other diseases. I may have misundersood my doctor, but I didn't think it was a drug that actually suppressed the immune system. I'll have to ask him. I bet Vee knows, she is up on all this "stuff"!!
I've got a lot of good info from her.

 
Old 03-31-2009, 10:30 AM   #6
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Re: Lupus & Recurring Illness

Plaquenil when I first got on it was described as an antimalarial drug but recently in the drug description when you get it from the pharmacy it says that it suppresses the immune system. My rheumatologist told me that long before it was rewritten in the description, however I suppose they rewrote it because malaria is not very common and plaquenil is used mainly to treat SLE now.

 
Old 03-31-2009, 06:06 PM   #7
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Re: Lupus & Recurring Illness

HI to everyone. In the 3rd edition of his hardcover, Dr. Daniel J. Wallace presents info that makes Plaquenil sound milder, as I read it (but I'm just a patient). He states: "Unlike steroid and chemotherapies, antimalarials do not lower blood counts or make patients more susceptible to infection."

Interstingly, he adds that Plaquenil's "onset of action" is 2-3 months, but that it doesn't reach peak for several more months.

I've taken it for 8+ years, and I've gotten a flu shot yearly for 40+ years. But this winter? UGLY! I had real flu for the 1st time since the early 1980's. It persisted for a month, rebounding in waves of varying symptoms; and I'm just starting to feel better now. I did read that this year's flu vaccine didn't protect against the bulk of the strains out there. But for those with lupus, obviously one can't assume anything: if any problem persists, it's no doubt wise to contact your doctor.

I hope all of you who had a lousy winter have rebounded. Warm wishes, Vee

 
Old 03-31-2009, 06:08 PM   #8
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Re: Lupus & Recurring Illness

Ebunselmeyer, I just went and read the information on my script and you are correct. It says that the medicine is an "immunosupressant and antirheumatic agent used to treat SLE or rheumatoid arthritis." No wonder I keep getting sick and just when I get rid of it, I get sick again.

I think this has been an eye opener that I have to stop teaching. There are always sick kids in the classroom and I just can't keep getting this sick every couple of weeks. My first rheumie told me to stop substitute teaching but he said it was because of the stress and that would trigger a flare up. Now, I know another reason why I need to find another job. This last illness has been very hard on my family.

Thanks to all who gave your input. I appreciate it. Please continue to post your experiences and any other information you might have. It might help another person on here looking for information.

Tricia

 
Old 04-08-2009, 02:34 PM   #9
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Angel MJ HB User
Re: Lupus & Recurring Illness

hi all ... i agree with all said so far ... it is an immuno supp & makes you a target ...
i worked in a corporate environment when first being dx sle ... put onto anti-malarial & high dose cortisone ... i made them clean air cons, sanitise computers, phones but still i caught EVERYTHING ... (shingles from a colleague who had visited a friend with a child with chicken pox) i was teased and suggested i put myself in a protective sanitised bubble ... i quit instead.
i was seeing doctors all the time ... 5 docs each with a px ... too much drugs ... and that from an ex drug addict)

(*i am not advising anyone to do this*) it was my choice but with help of chinese doc i quit ALL my meds
i no longer catch everything BUT i work from home now and will not let sick people in the door (it is too expensive for me - doc&meds)
i manage with occasionally visits to dx ... i am currently having a viral assault and as long as no organ involvement i refuse to go back onto anti-malarial (had side affects to most brands) & steriods i use as necessary but only in extreme cases ...
i have major issues in public spaces & shopping malls
i never touch hand rails, public bathrooms period, elevator knobs, always use a straw, minimise as much as possible the germ magnets. i am no michael jackson going out with a face mask & surgical gloves ... however tempting when going to the GP... always get worse after a visit
I no longer go to cinemas ... i always sit behind the lady with the too-much-cheap perfume and in front of the cougher ...
i go to places when they are quieter & love the internet
i only use my own pen EVER, no one else touches it (silly i know ...)

 
Old 04-08-2009, 07:09 PM   #10
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Triciah614 HB User
Re: Lupus & Recurring Illness

Angel, nothing that you said is silly. Only a person with lupus and recurring infections could understand. I personally thought of wearing a mask my last week of substitute teaching the class. I didn't because I didn't want to freak out the kids. :s

I'd like to hear more about how you got off all your meds. I am on plaquenil, stopped taking meloxicam because it upset my stomach, and I have steroids but I refuse to take them. I don't want those negative side effects.

Thanks for your post and the information.

Tricia

 
Old 04-09-2009, 01:59 PM   #11
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Re: Lupus & Recurring Illness

hi t,
just a thought ... could make the mask a lol
wanted to write earlier but started the drugs for the virus ... come here sleep my best friend ...

please understand when i made the choice to come off the drugs i was on (at the same time ... going on & coming off some)
rheumie: WELLBUTRIN, PLASMOQUINE, XYCAM, ADCO-PIROXICAM ,
ent: SERC, BREXECAM, FLUZOL, TAVANIC, DILINCT SYR. OTRIVIN NASAL SPRAY, ALLECET, NASONEX NASAL SPRAY,
gynae: Iron, Thyrotropin
psychi: ZOPIMED, LILLY-FLUOXETINE, TREPILINE (the drugs were being increased and mood stabilisers added ... with a trip to the pschye-ward:wave

chinese doctor; Dr Jimmy ... diagnosed using iridology (photo of the left eye ... black specks = sodium build up etc ... interesting hey) looks at nails and probably loads of other stuff i didn't pick up on.
Treatment plan =
partA: 1 year raw & organic fruit & vegetables ONLY, NO salt, no sugar, nothing cold, (lightly steamed veg in winter) purified water, herbal teas (not green, has cafeine) fish only after 6 months but NO meat, chick etc
partB: 3 weekly treatments of 1/2 hour accupuncture sessions up to 6 months
partC: uropathy (drinking your urine) would only reccomend if your diet is 100% organic ... research made me wonder why we have 'drugs' when each individual has their own all-cure ... once you get over the initial mind-block it does help ...
partD: magnetic therapy, wear magnetic bands around wrist & ankles to help align meridians ... don't even notice them
recommended to do meditation/yoga, loads of rest, walking on grass barefoot an hour before sunset to absorb neg energy, i was advised to stop work for a year ... corp environment and the drug really knocked me down ...
you need a really good support structure in place to make this work, it is not cheap the treatment & healthy food. not everyone understands and it is a LIFESTYLE CHANGE i was the only one to stop smoking ... house of 5 smokers (incl me) i would have to stand & cook for others while i did raw ? cooked them fish, meat etc ... obviously i was hit with major depression aND stopped treatment what was i thinking, i was feeling physically better than i had since i cannot remember when ... emotionally struggling but i have had major family losses and guess when i hurt it is not always depression ...
Dr Jimmy truely changed my life ... i didn't have the finances to see this treatment thru, dR.J offered to waiver the fees (i had paid up until i was forced into resignation) but found ourselves having to phone someone for gas money - the food wasn't organic) ... miserable flop.
i am trying to get an organic vegetable garden going, got side tracked 'faking' fatigue ... also trying to help run a business from home ... things are tough but i know that i will go thru all this again because i felt alive! imagine if i'd followed all the rules.
Angel mj

 
Old 08-21-2011, 10:30 AM   #12
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lupmom HB User
Re: Lupus & Recurring Illness

Quote:
Originally Posted by Triciah614 View Post
Hi to all. I have posted on here a few times, especially in the beginning stages of being diagnosed. I am glad to say that the plaquenil kicked in after about 6 weeks and my pain was immediately relieved and continues to get better with time. It took a little bit longer for my fatigue to go away though. The meds didn't start helping with my fatigue until about 10 weeks of being on plaquenil and gets a little better with every week that passes.

I have been having recurring illnesses. Since I started plaquenil, I have had a recurring throat infection for 8 weeks and have had two really bad sinus infections in the past 5 weeks. I also have 4 other infections going on at the same time as my sinus infection. I was wondering if anybody else has experienced recurring infections? If so, does anybody know if it's from the lupus and our inefficient immune system or if it's from the plaquenil? Just curious and any response would be appreciated.

Thanks,
Tricia

 
Old 08-21-2011, 10:45 AM   #13
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lupmom HB User
Re: Lupus & Recurring Illness

It took me a few years to realize that I had a connective tissue disease. In those years I was getting a cold once a month, then once every two weeks. Then my feet started aching and resting them did not help. I discovered that a hot bath made them feel better. When I went to specialist to discover why my feet were aching, and it was spreading up my legs, he discovered my connective tissue disease and sent me to a further specialist. This specialist named my disease as lupus, but by this point I had the flu and it wasn't going away. Another specialist diagnosed me as having colitis, but my lupus doctor insisted that the colitis was not related to the lupus. He also thought that my lupus antibodies were found by accident and probably would not affect me once the colitis was corrected. Well, after one year of drugs and another year of three operations, the colitis was corrected (I think), and I still have the lupus. Mainly, my symptoms are fatigue, swelling, and acid coming out of my butt, :. pain. I have adopted several healthy habit to help me function in my full-time job and my family with husband and two kids.

Here is what you will probably be interested in. I do not suffer from as many colds and I think this is why:
1. I eat a handful of fresh wild blueberries every morning. These are local blueberries that I froze in the summer. When I run out, I buy Canadian wild blueberries from the frozen section of the grocery store. These actually keep the acid at bay for most of the day. I should probably take them twice a day, but I would probably get sick of them. At night I take my hydroxiquin (plaquinel) and then I have the runs for a few hours, but I have noticed less pain otherwise, so it is worth it.

2. I also take a few supplements: iron, selenium, halibut liver oil pills, potassium, zinc. The selenium and iron really make my head feel less foggy. The potassium is because I don't have a large intestine anymore, I think the halibut liver oil pills keep the colds at bay. Zinc is just a healing supplement. I hope it helps to heal my intestines.

3. I also eat spinache every day, as lettuce in my sandwich. I think this is very important in staving off my colds. Before I was diagnosed with anything, the halibut liver fish oil pills and the daily spinache kept the colds at bay.

 
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