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Posted By : kimkevin - 6/24/2016 2:51 PM
Anyone with Lupus Panniculitis or Profundus? Just recently diagnosed after about a year going to see different doctors. Have nodules on both arms which looks like a bruise, but not painful. Torn if I should start plaquenil. Some people I know told me not to start it yet, but to eat healthier, eat lots of greens, go organic, take Vit. D, herbal drinks, etc. I just wonder if I don't take it, afraid my lupus will progress. Any thoughts? thank you.

Posted By : Lynnwood - 6/24/2016 4:01 PM
We have only had a few members come thru with Lupus Panniculitis (Profundus), and I don't believe any of them have posted in the last few months.

Note that Lupus, in all it's forms, is an auto-immune disease and I know of no studies proving that better eating cures such diseases. While of course we would all benefit from healthier eating, I am quite certain that my eating habits have had very little effect on my Systemic Lupus.

Some people read about the side effects of Plaquenil and become very scared, and all for no good reason. The eyes are very rarely actually affected, generally this only occurs in patients on high doses or patients with bad kidney function. While it is important to have an ophthalmologist check your eyes (tell them it's for plaquenil) every year, the incidence of actual damage is low. My ophthalmologist, in his 30-yr practice, and including the 20-some other Drs in his practice, has only seen it once!

GO ahead and start the plaquenil sooner rather than later, as it takes 2-3 months to build up in your system before you being to notice any changes.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : kimkevin - 6/24/2016 5:31 PM
Thanks for your input. What do you think about getting vaccinated with shingles vaccine before taking plaquenil? My pharmacist told me that he has a customer taking it and developed shingles right after. I thought maybe it is just coincidence since it is not listed as one of the side effects. As I was searching on the internet, there was an article saying shingles risk increases in people with lupus, COPD and RA. I guess, it's not really from the plaquenil, but I thought I'll consider getting one, but I am just about to turn 50 (FDA recommends 60 yrs. and above).

Posted By : couchtater - 6/24/2016 7:09 PM
Shingles vaccine is a live vaccine and it's not safe for us the get live vaccines.

I got the vaccine and developed shingles after it. My rheumatologist told me I shouldn't had got the shot to begin with.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : kimkevin - 6/24/2016 7:51 PM
Thanks! I actually left a message to my rheumatologist to ask for his advice yesterday regarding getting the vaccine, but hasn't called me back. well, now I guess I don't have to. i am just puzzled that when I went to see my PCP last week and ask her about it, she went ahead and ask for authorization so I can get vaccinated (She knows I have lupus).

Posted By : Lynnwood - 6/24/2016 9:02 PM
Joy is spot on! People with auto-immune diseases should NOT get live vaccines.

(Personally, I don't know if the shingles vaccine is live or not, but if it is, best not to get it.)

Plaquenil is just the current US brand name for hydroxychloroquine, which has been used around the world for years and years to prevent and treat malaria. If it lead to shingles we'd know about it!!! It is much more likely that whatever condition the person had that caused them to need Plaquenil also caused them to be more susceptible to shingles.

Most general practitioners don't know all that much about Lupus. Some even think they are qualified to treat it, but they are not!! Much better to stick to your rheumy if there is any question about anything... or ask us!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : kimkevin - 6/25/2016 8:36 AM
Thank you guys!! I'm glad I found this forum. This is such a big help for me. For sure I will be having more questions down the road. God bless us all.

Posted By : ruthl1 - 11/2/2016 12:01 PM
I was diagnosed with Lupus profundus a few months ago. I have been on plaquenil ever since then. I have still gotten some strange rashes developing but going back to the dermatologist to see if related or not.

Posted By : kimkevin - 11/3/2016 10:42 AM
Hi ruth11
I also have lupus profundus and just got diagnosed this year. My rheumy told me that these are rare kind of lupus. May I ask what were your symptoms that led you to see rheumatologist?

Posted By : ruthl1 - 11/3/2016 1:11 PM
Well first I had a lot of joint pain, sometimes would just feel sick with low grade fevers. Then I noticed every time I spent time in the sun for long I would break out in a rash. They ran all the bloodwork on me and kept saying nothing was wrong except my arthritis and normal things but because of the rash I was sent to the dermatologist. He did a biopsy on my neck and said that it was definite lupus profundus. he said that the joint pain and fevers could go along with this condition but rheumatologist still doesn't really seem to believe that. I'm on plaquenil for it but now getting more rashes on my legs. Going back to the dermatologist actually today.

Posted By : kimkevin - 11/3/2016 1:42 PM
Yours is definitely different symptoms from mine. I had some sort of bruises on both of my upper arms, but no rashes or joint pain.My PCP sent me to oncologist, but she couldn't figure it out what was wrong with me so I took the liberty to make an appointment with rheumatologist and thats when he told me to seek of an advice from dermatologist and take biopsy. In fact, my right arm had an indent or part of where the bruises look a like caved in. I am also on 200 mg plaquenil since July. I will be seeing my rheumy next week. I wish you luck. I hope we can talk more and share our experiences since there are few of us out there with thus kind of lupus.

Posted By : ruthl1 - 11/3/2016 1:46 PM
I know, its seems very hard to find anyone who really understands it. What I have found on the internet suggests that once you have it you have a fairly good chance of getting SLE so one Dr. said I may be in a crossover type situation. I will check in from time to time to see how you are doing!

Posted By : kimkevin - 11/3/2016 5:57 PM
sounds good. Hoping for the best.

Posted By : Butterflake - 11/3/2016 11:22 PM
Welcome to our forum kimkevin and ruthl1. The shingles vaccine (Zostavax) is a LIVE attenuated virus which means it contains weakened virus that it will produce the proper response: no chance of getting shingles for up to 5 years.

Unfortunately all persons with immune system problems should not take the vaccine because it can actually cause us to get shingles. Anyone who had chicken pox is carrying dormant varicella zoster (it causes chicken pox and shingles). As a healthy person ages their immune system weakens and that allows the virus to come out of the dormant state causing shingles.

I had shingles about 2 years ago. I am grateful that mine was over a large area of my back and the scars can't be easily seen. Where you get shingles varies with the nerves it attaches to and then travels that nerve branch. At first the blisters are large and watery which is a real mess. I went to my dermatologist for my shingles, but your PC can treat you just as well.

I don't know if the vaccine can cause other damage to those of us with immune problems, but even knowing first hand what shingles does, I would not get the vaccine. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : ruthl1 - 11/4/2016 7:06 AM
Thank you for the info on the shingles vaccine, I didn't know that. I wont be getting it then.

Posted By : kimkevin - 11/4/2016 3:16 PM
Thanks for the info Butterflake.

Posted By : ruthl1 - 12/21/2016 1:08 PM
I have a new weird issue, I have the feeling of something poking out of my back near my spine. It hurts when i'm sitting against something, or even laying in bed. I did mention it to my family doctor and he felt my back and didn't feel anything. Since I have reflux, he said it could be nerves from my esophagus irritated and the feeling is coming from that. I'm on a stronger med for my reflux, but the esophagus thing just doesn't sound right. Has anyone experienced that?

Posted By : ruthl1 - 5/10/2017 12:39 PM
I am getting the type of thing you were talking about with the bruise like spots. I have a large one on the back of one leg and a small on the inside of leg and another right below my stomach. I was given creams and a medication but they are still there after about 3 months. I believe I am stuck with them for good.

Posted By : tina0626 - 5/31/2017 10:24 PM
I was recently diagnosed with lupus panniculitis as well. They initially thought it was morphea and so I never did anything because I was told it would "burn-out" in five years. Lesions started on my arms, spread to my back, then most recently my chest, face and scalp. Has anyone had it affect the scalp? It seems to have become more active in the past three years. A lot of stress occurred during the past three years, we moved to Ohio, I was working at a terrible job that caused a lot of emotional stress, I planned my destination wedding, and everything seemed to crash when I went on my honeymoon in August. I have slowly been recovering. Things seemed to improve from September to January and I was on Plaquenil. Then my hair started falling out again and new lesions popped up on my breasts and face. I am on methylprednisolone and chloroquine now since the doctor thought Plaquenil was not effective. I hope someone out there sees this. I feel so alone with this condition. My doc says it's super rare and I seem to have read every article out there lol. No one seems to write about scalp involvement or the hair loss that comes with it. Wondering if anyone has had a similar experience.

Posted By : ruthl1 - 6/23/2017 11:38 AM
Sorry tina0626, you are right this condition is pretty rare. I have printed out articles and given them to my Drs to try to explain things but don't even know if they have read them. My rheumatologist seems to think that I only have skin involvement since my blood tests are negative. I had the biopsy from dermatologist to diagnose. I have not had the scalp involvement yet. Mine has been mostly from my chest, arms and legs. I have two very large bruise like spots that wont seem to go away although they have faded somewhat. I get bad rashes on my chest and back and upper legs when I am in the sun much and have crossover symptoms of SLE even though my bloodwork never shows it. I have a lot of joint pain and exhaustion with it. I'm on plaquenil, Neurontin and Cymbalta

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