[Pilipala]

Hi-I've been seeing a Rheumatologist and Dermatologist since the Spring now. I have a number of symptoms of Lupus and a butterly rash that is always present. Some days the rash is faint-other days or if I go out into the sun it gets really strong. I have had a number of symptoms over the years: tiredness, aches, pleurisy three times, rash on face, rashes on hands, depression, temperatures, fever type symptoms with chills, bleeding gums, very premature birth. My consultant thinks I have a connective tissue disease which is probably Lupus/my dermatologist thinks I have a connective tissue rash also. I have been on Plaquenil for about 4 months now-for most of the time I have got better and less tired. Some days however my rash gets very bad and I get exhausted and it comes and goes. Usually around my menstrual cycle the symptoms are at their strongest. My ANA's have been negative and today my dermatologist said that he didn't want to do a skin biopsy unless my rash is very strong. I just can't predict when it will be like that again it comes and goes every few days-but I have to make an appointment a few weeks ahead. My rheumatologist really wanted me to have this test he thought it would tie everything together and I might get a diagnosis. I feel really exhausted just trying to sort it all out. My toddler has health problems too including hyperactivity disorder/sensory processing. So I really need to sort this out. I also suffer from Endometriosis quite badly and several days a month I have problems with all the day to day stuff. Has anyone else had any other types of tests? Or had a biopsy somewhere else-I just want to get a diagnosis so I can get the proper treatment. Thanks in advance or any help

 

[sam101360]

Hi:

Generally the bioipsy is done in two places, in the rash and in some unexposed area such as inner thigh or buttox. The reason for this is to determine if it is some other reason or lupus. Lupus will test positive no matter where they take the sample from, however the rash area will show more definitive information for the lab.

Perhaps the rhumy needs to define the reasons for the need to test so the the dermy will feel justified?

Hope this helps - Stephanie

 

[x_claire_x]

Hiya, I have mixed connective tissue disease, a mix in my case of lupus, schleroderma, raynauds and I am also hypothyroid... you may get some answers but to have connective tissue disease, certain elements show up in your blood. Some people on here have always been ana negative, think about 2-5% can fit this category... some have had diagnosis with a skin biopsy so I expect they will be along later to give you some insight into how and where this is usually performed... until then start keeping a diary daily of your pains and score them 0-10 (10 being unbearable) and also photos of your rashes and any swollen joints etc. then you will have documented evidence at any appointments you attend. Keep pushing for answers, but it may take a little time for all this evidence to come together to allow the Rheumy to diagnose you... since the spring time isn't that long, though I know it feels like it.. it took me five months when I ended up in hospital, that was quick compared to others experiences!! Take care whilst they sort out your care.
Claire XX

 

[x_claire_x]

Ha stephanie just has answered that!!!:rotfl:

 

[debatat]

Hi and welcome to the site. It is a great place to get information and support. The others have given you excellent advice. The road to diagnosis is a difficult one. It sounds as though you have a good rheumy, he has started you on treatment already which is good. Taking photos is helpful as you have already found out rashes are very unpredictable!! Plaquenil does take a few months to get to its maximum effect. Has the rheumy mentioned any other kind of treatment?

I know its difficult especially with a little one and adhd is tough I know. Have you got anyone to help you so you can have a rest? Time for ourselves is important so we can recharge our batteries. When is your next rheumy appt?
Don't give up, you will get there.

Deb

 

[sam101360]

As an aside...I was DX solely on Biopsy as I am what they call serum negative. I have never tested positive for anti-bodies or anything else except APS. I did have one positive ANA, occasional low compliments, and some other tests come back odd at times. I have been officially DX with SLE, APS, FIBRO, Ostio Atrhritis - in spine and hips (maybe more), SCLE, RA (via xray), Secondary Sjorgens and Reynaurds. I have kidney and eye involvement, as well as skin joints and muscles.

Blood tests are not always as conclusive as we would hope, but a good rhumy can put the pieces together and treat accordingly.

I am an Plaquenil (400mg) and CellCept (2000mg) and baby asprin...other meds as well but these are primary for my lupus.

My thoughts go with you into every new day - Stephanie

 

[Pilipala]

Thanks

Thank you all for your kind thoughts and advice

My next appointment with my Rheumy is at the end of August. So far the only other thing he has suggested is doubling the plaquenil dose.

I definitely think getting the skin biopsy done is the way forward-maybe I can get him to persuade the other consultant to do the test-defining the reasons is a good idea!

It is tiring having a toddler with health problems also -unfortunately my only relatives live in Wales and we are in London. My best friend got married the other year and moved to New Zealand so its been quite difficult. My son also is growing out of Chronic Lung Disease so we have to be careful now with the flu and so on. It makes it all a bit harder to get out and meet other mums.

Other symptoms have returned this week also-I have been getting quite alot of mood swings especially around my period and the week afterwards. The rash has been up more and I have also had some numbness in my right hand. Since last August I have had a nasty rash on my fingers-that they tested but didn't know what was causing it. I haven't had a biopsy on it though I had a scraping which was negative for fungal infections. I have developed some pitting on my finger nails also. Whilst I was pregnant the numbness was very bad on this hand and it wasn't long after that my son was born 3 months premature. I wonder if anyone else has had any similar experience-or other thoughts on might be causing the problems with my hand?

Thank you all for your kind advice

 

[LolaLola]

I also had a very premature Son. Okay he is nearly 22 now, but I wanted you to know that I understand your problems. My Son is very clever in most ways but sometimes his thinking is decidedly different to other people. As a child there were things he found difficult due to his poor co ordination and lack of certain skills. He did have some brain haemmorhages after birth like many preemies, but does very well. I just think of it as him being faultily wired!
I had no relatives to call on either,so I do understand. Just wanted you to know you will get through it.
x Lola

 

[Pilipala]

Thanks for all the advice

Thanks everyone-I am seeing the consultant again this week and have been getting more rashes on both hands-gets really red and painful. Some more numbness in my fingers and alot of nausea the last few days. Am wondering if its the condition or the Plaquenil. I want to get the biopsy but my rash keeps going up and down-they said they might take a sample from my hand. My face comes out in a strong rash in the sun also so I have been avoiding being in direct sun. Anyway keep you posted if I get any closer to a diagnosis.