Is this Lupus?

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Dri
New Member


Date Joined Mar 2014
Total Posts : 5
   Posted 3/15/2014 12:09 PM (GMT -6)   
I have been having a strong pain, skin thickening in one of my toes for the past 4 months. NO cream or strong antibiotics worked. Finally a skin biopsy stated I have pernio. Still with different creams it did not go away. ON top of that I am having pain in my toes and my hands are getting swollen and red and I feel like needles through my fingers , pain I can hardly touch the door knob. I feel tired and easily short of breath. Mainly in the morning I cannot take a deep breath as it hurts and I choke on my own air and cough if I try to take a deep breath. Derma ordered a blood test which came out as high in Homogeneous and antinuclear (1:640) and also on Antiscleroderma 70 antibodies.

I am now on prednisone (3 weeks: 60 mg, 40mg and 20 mg) prescribed by Derma and now Family doctor also gave me Hydroxychloroquine 200 Mg /days. The derma said something is wrong with my immune system and sent me to see a Rheumatologist (4 wks from now). The family doctor says he will take care of me and ordered more blood work which he said will take 3 weeks to get results and that I should not see the rheumatologist yet. But although both are giving me these prescriptions none of them gave me a firm diagnostic. What is going on? Any recommendations or hints. Thank you

Post Edited (Dri) : 3/16/2014 10:31:52 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 3/15/2014 1:00 PM (GMT -6)   
I would go straight to the best rheumatologist I could find. If you had a test positive for cancer would you stay with your family doctor or would you consult with an oncologist. I can't imagine your doctor's reasoning behind his/her advice. It can take months to get an appointment with a rheumatologist so please schedule an appointment as soon as possible.

Your positive ANA and Anti-Scl-70 antibodies indicate some form of scleroderma, and potentially systemic scleroderma, which can be a serious autoimmune disease like lupus. It can potentially cause sclerosis of the lungs or other internal involvement. My BFF has sclerosis in her lungs and the scleroderma has caused thickening of her esophagus as well.

Autoimmune diseases are varying in severity and often difficult for even the best rheumatologist to diagnose. Everyone here will agree that early diagnosis and treatment are important.

Tell us more about yourself. Even though this is a lupus forum, there are people with other autoimmune diseases here and it's a good place to connect and get support.

Dri
New Member


Date Joined Mar 2014
Total Posts : 5
   Posted 3/15/2014 1:10 PM (GMT -6)   
Thank you for your quick reply. And you confirmed my thoughts, why wait as it takes so long to get an appointment with a rheumatologist. So I did keep my appointment with the rheumatologist that is just for April, in the meantime I am taking the medicines given. Will see derma again in 2 weeks and potentially get more blood results in 3 weeks. I did see that from the results it can be scleroderma and/or lupus. So it is what is confusing me as symptoms seem very similar and from my reading I could not still understand the difference between one or the other, and if there is a better one to hope for =-). I am keeping myself cool but the wait and uncertainty is not nice. Also while this morning, my 5th day under prednisone I think my hands are much less swollen that made me happy, on the other hand I am having this not strong but frequent strange dry cough, and if I take a deep breath it gets much worsen all morning feeling like that. Also some minor itching through my face, head, nose, ears, hands... no signs on the skin, seems like an allergy reaction. This is just weird and I even think if it is just psychological and my brain is making it up =-). Thanks again for the support.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 3/15/2014 3:20 PM (GMT -6)   
I can't count the times when I convinced myself that this was all in my head, but the fact that prednisone is helping alleviate some of your symptoms should convince you otherwise. You aren't losing your mind. I understand a lot of the differences between lupus and scleroderma but not enough to give you an educated answer. In both, your immune system is out of whack, and is attacking your own body. However, they manifest somewhat differently. April is not far off. In the meantime, prepare yourself for your appointment.

I keep an updated new doctor's sheet on my ipad. It lists:

Current & past diagnoses and surgeries;
All symptoms past & present (whether or not you think they pertain to an AI disease);
All current meds;
And finally my medical team, including phone #s and addresses

In your case I would also take pictures of your skin problems, just in case they aren't as visible when you see your rheumy.

Most important, of course, is to take copies of your labs.

Your rheumatologist will appreciate being able to look at a typed list of your symptoms since time is limited and many of us tend to ramble.

At the top of the lupus forum page is a lot of information, including how to prepare yourself for a doctor's appointment.

Lastly, make a list of any and all questions you have for the doctor.

And let us know how things go.
SLE, fibro, renauds, restless leg?

Dri
New Member


Date Joined Mar 2014
Total Posts : 5
   Posted 3/15/2014 5:58 PM (GMT -6)   
Thank you once again. Will share as I learn more.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 10:08 AM (GMT -6)   
Yes, absolutely go see that rheumy and let us know how it goes! The rheumy will likely order the same tests and more anyway. That's what they generally do.

Please feel free to come and post if you have any worries, fears etc. Many of us can share your experience and offer info and support.

Hugs,
Joie
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Dri
New Member


Date Joined Mar 2014
Total Posts : 5
   Posted 3/16/2014 10:30 AM (GMT -6)   
When I thought I was getting better I had a not so nice night. Last night I had a burning sensation through my feet and hands and body. It was like the pain and pinching would circulate through my body. My hands, mainly right is hurting badly, I can't stand the needle feeling in my thumb. I also feel like my body is itching and it moves through my hands , face, head. I feel pressure on my right ear, some pain, and had headaches on my right side. Then it went away. Also some abdomen pain, something that comes stronger and circulates from one side to another and then goes away. But the pain on my right hands does not go away and climbs through my arm to my shoulders. Are these known symptoms? Can I take anything to relief these symptoms, while I am already taking prednisolone since Tuesday and hydroxychloroquine since Friday. I have to work tomorrow and cannot be feeling bad.Are these known symptoms? Thank you for the support, this is all so new to me, I have no clue what I am going through.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 3/16/2014 11:58 AM (GMT -6)   
I'm not sure. Autoimmune causes so many weird and mysterious phantom random pains. Rest as much as you can for today and maybe you could call a pharmacist and ask them if there are any safe pain relievers you can take. Then definitely call your drs. tomorrow and be sure.

In my experience the pharmacist is usually good to ask in a pinch when it's a weekend or after hours. They can be quite and sometimes the most knowledgeable on interactions etc. But always get it backed up by your doctor. So you don't get yelled at lol. I'm surprised you weren't told what to take for pain over and above the prednisone.

Perhaps some posters that are taking it can expand more on this for you. I don't take it so I don't know.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/22/2014 3:35 PM (GMT -6)   
I have the burning in my toes and balls of my feet at night. Have Raynaud's in my toes, which has been visible going on three months now. Previously, it would happen once in a great while and last about 10 days. My former GP had no idea what it was--and it used to be limited to a couple of toes.

Also, the sunkissed look I've gotten for years after being in the sun or having wine or at time, simply blow drying my hair is probably a butterfly rash. Silly me.

I have an appt with my GP this coming Thursday.
(My mother died at age 53 from lupus complications.)

Glad to have found this site.

Jan

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/22/2014 3:38 PM (GMT -6)   
Also--saw a rheumy about eight years ago, and he said he knew I didn't have lupus because I was too old. HA! He was serious!
I'm 61 and am thinking I have plenty of symptoms that match a lupus diagnosis.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/22/2014 6:16 PM (GMT -6)   
Welcome, jan.
Make sure to make an introduction thread so we can welcome you properly.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 3/22/2014 10:24 PM (GMT -6)   
Thank you, Joy. I'm afraid I'm going to have to ask a silly question for the second time today. I'm new to participating in a forum and am not quite sure what type of "introduction thread" you mean.

Like starting a new topic for others to click on and introduce myself then? Sorry!
Jan

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/23/2014 1:13 AM (GMT -6)   
Yes, exactly. :-)

And there's no stupid questions here either. tongue
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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