[Pilipala]

Hi I am new here and I'm having a hard time trying to find out whether or not I have Lupus or a connective tissue disorder or just another condition. Would appreciate any advice anyone could give. I have had my tests back ANA negative etc but I have seen a dermatologist and get a Butterfly rash and alot of other symptoms: mood swings, extreme fatigue, pleurisy several times, numerous odd rashes, preterm birth etc. The dermatologist is convinced the rash is connective tissue and not Rosacea. So I have been offered a trial of Plaquenil as my rheumatologist is convinced there is something going on. He has also suggested I have the Lupus band test. Is there anyone out there who has been in a similar position with negative bloods but symptoms and a butterfly rash? Could anyone else advise on the Band test and whether it will leave a noticeable scar? I feel I don't know what else to do as my Dr is stumped. I desperately need to get more energy as I am busy mum with a toddler with ADHD. I would be grateful for any advice anyone could give-many thanks

 

[Clare.T]

A warm welcome to the forum Pilipala

I wouldn't hesitate to have a skin biopsy to help determine if I have lupus and just as important if I should take Plaquenil or not. Plaquenil takes several months to work and while it is described as a benign drug there is not much point taking any medicine if it is not the right one. It will only delay diagnosis further.

That being said, the biopsy doesn't always reveal lupus but if it is negative it doesn't mean you don't have lupus. If it does show lupus that is a major step and there is no doubt whatsoever that Plaquenil is appropriate.

It is important that the biopsy be examined by a specialist dermatopathologist, if at all possible. In the USA this means a board certified dermatopathologist. In the UK we might just have to take our chances depending on where we are being treated, but it is important that the pathologist knows what he is looking for.

The chances are reasonably high that the biopsy will show lupus. Most often with SLE the biopsy is taken from a partially exposed but non affected area such as the innner forearam and/ or from non exposed non affected area such as a buttock where a tiny scar wouldn't bother most people.

I have never heard of anybody having having any complications during or after the biopsy. It doesn't hurt and a few days with a stitch or two isn't all that hard to bear.
I have had three wedge or slice biopsies over the years but none recently. One was from my inner forearm and the other two from lesional skin, under my chin and the last on the 'vee' of the chest where I had a lupus lesion.
That was over 15 years ago and I admit there is a noticeably white + shaped scar there about an inch across and half an inch wide. It would certainly bother me except that it is the least of my appearance concerns and my total appearance has to be the least of my many other concerns in life. That is by the way an unusual place to take a biopsy but if by any chance the doctor should propose to take it from somewhere where it might be visible ask him not to - there are options.
However the biopsy most often used is the punch biopsy where a tiny plug is removed. I don't know how how that scars.

I can't see the other two biopsy marks at all but my skin is very white and I have no particular problems with scarring, no keloid concerns for example.

Debilitating fatigue is the major complaint in lupus but there are several possible reasons for it apart including diseases that are often enough found with lupus. Anemias of various sorts including B12 deficiency should be carefully looked for. A disease called fibromyalgia which has many symptoms similar to lupus, diabetes and thyroid are other possibilities.

Of course fatigue is very common in young conscientious mothers even when the children have no particular problems and they are stay at home mums. As a general remark, the tendency is to soldier on and not acknowledge how tough things are, thus not looking for all ways to make life easier.

Please ask any questions you might have and we'll do our best to help you.

Bye for now
Clare

 

[onetay]

Pilipala,
Welcome to the site. To answer your question yes my labs are all neg. but my biospy came back that it was for sure sle lupus. Most doctors don't understand the disease of lupus and it is very important if they think you have lupus to get someone that knows what they are doing. I send you prayer and wellness in the up coming days.

 

[LolaLola]

Hello and Welcome, My labs were negative for many years despite severe symptoms and a cracking malar rash. Also labs are often not very helpful early on in the course of Lupus.

Mine eventually obliged but I was already diagnosed and treated by then due to medical history, examination and the severity of my symptoms. Hope this helps you.
x Lola

 

[Pink Pearl]

Hello, and welcome to the board. I fall into the minority who has never had a positive ana. I do have anti ds dna positive, apl positive, aca positive, but still am ana neg.

The diagnosis of sle is made on meeting 4 of 11 criteria, with or without lab work. All too often doctors get locked into the mindset that without lab work, cannot have the dx. I was diagnosed 20 years ago. I get frustrated when doctors get locked into one mindset. This disease is known as the great immitator for a good reason. For the list of 11 symptoms, go to the LFA web: www.lupus.org.
Take care,
Sally

 

[Clare.T]

Hello again Pilipala

We have the classification criteria with additional comments on our site here

http://www.thelupussite.com/forum/showthread.php?t=33123

This list was drawn up for classification of lupus for trials, studies and statistics. It doesn't include significant common signs or for example details of the many non specific skin problems frequently encountered. It doesn't even include the lupus specific subacute cutaneous skin condition

Recognising the limited value of classification criteria in clinical practice Dr Hughes the world famous British lupus doctor, drew up a list of "Alternative Criteria, more like additional in fact. That is also in a sticky at the top of Not Yet Diagnosed section.

All the best
Clare

 

[Pilipala]

Many thanks

Hi everyone, sorry for slow response-unfortunately I have been away for a few weeks as my father passed away unexpectedly. Thanks to everyone for the advice-since I last posted I have been getting more skin rashes one on my hand and also around my ear. I am hoping that maybe they could test there first of all. I'm going to speak to my consultant tomorrow so hopefully all will go well!

 

[dollydaydream]

Sending you a really big hug xxxxxxx

 

[iksyfaye]

So sorry for your loss...you are in my thoughts and prayers...

 

[x_claire_x]

Hiya, if you think it could be auto immune related you need to be referred to a Rheumatologist, preferably one that specialises in auto immune diseases. You don't seem to mention whether you have seen one or not? I wish you all the best on your 'diagnosis hunt'........

 

[Pilipala]

Hi-thanks you all for your kind thoughts-I did see a Rheumatologist that my dermatologist referred me to. My test results haven't shown anything but he still thinks it might be Lupus/connective tissue in the early stages-am still pondering what to do at the moment.

 

[Lily]

Hi,

I'd go for the skin biopsy in your shoes, it may give you answers to your questions.

love
Lily

 

[Pilipala]

Yeah, I've been thinking about the skin biopsy today again. Last night my rash came up again quite badly and I was feeling so unwell. Have had over a month now of menstrual bleeding also. I'm phoning my consultant again tomorrow. I guess the thing that put me off having the biopsy before was the dermatologist saying it can cause a scar on my face. I wasn't really given much information about it-he did say it was only about 60% accurate, but I guess at the moment it still might be the best solution. I'm not usually so indecisive but have had a bad few weeks since my dad passed away. My two year old has only just been diagnosed as having Mild Cerebral Palsy -he has speech and motor problems. I just really need to get to the bottom of this as I have been constantly tired, and I really need to have more energy. Does anyone else have Endometriosis as well as Lupus? I was diagnosed with Endometriosis a few years ago which is complicating everything at the moment.

 

[x_claire_x]

Hiya, yes I have had severe endometriosis but had a hysterectomy and a bowel resection as it had wrapped around the bowel, ureters were scraped and an endometriotic lump removed too.. in surgery for three and a half hours and they could have carried on for another three!!! That made me feel exhausted and I was bleeding very heavily..though I had a fibroid too. With what you have been putting up with I am not surprised you are tired. My MCTD was then diagnosed a year later...whoopee doo... I just thought I might get a break, but there you go My bloods were showing slight changes for five months before a flare put me in hospital and a diagnosis. They believe I had shown signs of it for at least five years previously. I wish I had had surgery for the endo years earlier, I have kept one ovary for hormonal reasons and I feel loads better...apart from the MCTD I am pretty well. You have a number of issues going on but try and tackle them one step at a time...perhaps it is also time for a trip to the gynaecologist for some advice? Have they checked your iron levels?... take care.
Claire X

 

[Pilipala]

Yeah-I think I might need to go back to the gynaecologist also. Its hard to know how to tackle everything at the moment. I've phoned my rheumatologist he's going to get back to me tomorrow now. So I guess maybe skin biopsy and meds then off to see the gynaecologist unless there is some sort of connection. Thanks for your advice-sorry to hear about all of your problems also with the Endometriosis

 

[x_claire_x]

It is much better now thank goodness... you will get to a better place soon too.. it is just a question of plodding through and problem solving! Keep your trust in your instincts and be quite sure that you need this all to be sorted so that you can get on an even keel. Trust in your body and I wish you all the best with your appointments... go get em
Claire X

 

[Pilipala]

Thanks Claire Its true just need to get myself back on an even keel again! Thank you all for kind support-have a lovely weekend! Will keep you posted how it goes x

 

[maryfrances]

First, my condolences on the death of your father.

Keep in mind that stress can make auto-immune problems worse. I had a core biopsy done on my leg for a rash. It left a scar somewhat like a cigarette burn. It wasn't sore for more than a day or two and not really all that much. I've also had a small tissue biopsy and again, it was only sore for a day or two. I send you good wishes for results. I know it can take a while sometimes/
mary frances