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SydneyJane13

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 #1 
Hello, like many of you, I'm sure, I've struggled with immune issues and pain for a long long time.  Before today, my last rheumatologist appointment was about 5-7 years ago.  I'm in pain a lot and went, but right off felt uncomfortable by doctor comments like, "the pain you say your in."  I was patient and tried the medication plaquenil.  My primary doctor had encouraged me to go.  It seems like the doctor didn't check my chart to notice a severe allergy to sulpha as within a few days, I developed a severe rash needing steroids to clear.  The plaquenil affected the pigment in my left leg discoloring it.  I realize side effects can happen with medications but I was upset that the allergy wasn't noticed and felt put down for saying I was in pain.  So I didn't go back.  This year I had 2 episodes of Bell's Palsy resulting in my primary dr referring me once more to a specialist, neurologist.  I went and he was very nice, professional and knowledgeable. He ordered an MRI and discovered brain lesions and white spots on my spine.  He says I'm at risk for MS but do not have at this time and the damage is caused by lupus.  My primary felt I had lupus as well based on blood work and symptoms.  Then, I get injured at work with a student with special needs hurting my spine and neck.  Visit spine doctor.  He was great, polite and helpful but gives me a talking to that I'm not following through with rheumatologist.  With that and brain lesions, I make an appointment.  Look forward to today thinking maybe I could learn something to protect myself so that I could take care of my family and be healthy.  I took time off from work and then got my hopes up for this appointment for nothing.  I wasn't raised to be a "doctor" person and don't often go and this would be why.  Having neck, spine pain, hand pain, joint pain, swelling, miscarriages, brain lesions and white spots on my spine can't give me the respect of needing some specific help, the natural route it is.  If I could get through to even one rheumatologist to encourage them to actually listen and be more compassionate, this post will be worth it.  I have better things to do that go to a doctor and won't justify my pain and illnesses to them any longer.  The judgement is made even before you're able to explain what you're experiencing.  My primary care doctor, neurologist and spine doctor are not like that and I must give them credit for their time and consideration.  Quote from spine doctor, "Rheumatologists are really difficult to work with."  Agreed!
Robinj

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 #2 
Welcome

Have you been dx'd with lupus???

Sorry,but your post is really all over the place!

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taffylinden

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 #3 
Yes, SydneyJane, maybe you could clarify things for us. As far as I can tell, you've been happy with your PCP and your neurologist, both of whom have said you have or probably have lupus. You are not happy with your rheumatologist because he

1) worded things in such a way as to make you think he didn't believe you're in pain.
2) didn't appear to have read your chart carefully.

But Plaqeunil is NOT a sulfa drug, so if you were prescribed it and got a rash, it's probably not because the rheumatologist didn't see that you're allergic to sulfa. Sulfa drugs, by the way, are generally not recommended for SLE patients anyway. Plaquenil is a medication commonly prescribed for auto-immune disorders. It's generally considered to be pretty safe, but of course, if you have problems, you should call the doc who Rx'd it. 

Next time you go to your rheumatologist, bring a list of your symptoms. Yes, he should read your chart, too, but that list of symptoms is very healthy. If possible, bring a friend with you. He or she can clarify things you or the docs say to each other. 

Best of luck with everything!

SydneyJane13

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 #4 
Hi Robin & Taffy,
yes, it's all over the place.  Sorry, I was upset.  I did bring a list with me and my pcp did send her notes of concerns she had.  Plaquenil has a sulpha filler that's why I had the reaction.  All I'm looking for from a rheumatologist is advice on pain, brain lesions, white spots on the spine, kidney pain and occasional kidney infection.  I don't need pain meds, but in my reading and research, ongoing pain can be related to development of brain lesions as can lupus, MS, migraines and other things.  So, I just need some direction to help me maintain myself.  I do really like my pcp and neurologist but they both feel the problems are primarily related to lupus.  Yes, I had been diagnosed and went to a rheumatologist but had that poor experience so just didn't go back.  The dr. app just made me feel like I'm going all the way back to the beginning years ago.   
Robinj

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 #5 
 "Plaquenil has a sulpha filler that's why I had the reaction.  "

never heard that. I am allergic to sulfa

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
SydneyJane13

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 #6 
Hi Robin, yes after getting the rash on my calves and legs and thinking it looked like a sulpha rash - I checked with pharmacist and yes, has sulpha in it. 


Robinj

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 #7 
News to me
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Cakelady

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 #8 
I have brain lesions which causes me to have seizures. I also see a neurologist every 6 months
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Raglet

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 #9 
I think your pharmacist was confused - plaquenil is a sulfate, not a sulfonamide like Bactrim etc. I am pretty sure that it's the sulfonamides like Bactrim that people with lupus are allergic to. Of course you could still be allergic to plaquenil and some people are, but that doesn't have anything to do with allergies to sulfa antibiotics. Hope this makes sense.
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SydneyJane13

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 #10 
Hi, yes, I agree with what you're saying, but apparently the generic form does contain sulpha.  I got the rash and then the pigment in my leg was affected to.  It was just a bad experience and my latest dr appointment just brought me back to that.  I'm just overwhelmed by the number of health issues and just need some guidance as to whether there's more I should be doing or something I should try - for the lesions, kidney thing and arthritis or is the condition just is what it is... That's all I was looking for at appointment.
SydneyJane13

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 #11 
Hi Cakelady, do you mind sharing what advice or direction your neurologist has given you?
Robinj

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 #12 
Hydroxychloroquine sulfate (Plaquenil) is not a sulfa drug. That is a misconception. However, hydroxychloroquine can be associated with serious dermatological side effects including severe rashes and exacerbation of psoriasis.
 

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
SydneyJane13

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 #13 
ok, thank you.  It was the info I got, but really I posted because I was frustrated the years of trying to find help to help cope and find treatments that may help to prevent further injury.  The doctors don't necessarily agree without any treatment for inflammation, pain or advice for how or what to do about brain lesions, white spots on spine and increasing kidney pain, infection.  My regular doctor is very helpful and has since made a plan to help.  She just felt it may be a specialist visit.  I just have not had positive experience with my rheaumatology appointments.  But I guess the I will take heart in that I do like and trust the other doctors I work with and just go with that.
Mr. Bun

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 #14 
SydneyJane?

My brain is completely covered in lesions (white matter demyelinization) and my neurologist said it is not repairable nor treatable.  And short of taking my brain out & having a look at it....he could not explain why.

Sorry, probably not what you want to hear......but that is my experience.

Take care,

Bun

Cakelady

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 #15 
If I am not mistaken and I could be but there is no treatment for brain or spine lesions. And I have them to
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