Does anyone have Lupus? Have noticed that ... - PBC Foundation
Does anyone have Lupus? Have noticed that it could be like the "umbrella" with all these other diseases "under" it.
I dont have lupus, but i do have Scleroderma which is a rarer 'cousin' of lupus. Also have hypothyroidism so that is 3 autoimmune conditions. No more please!
I think I have a form of scleroderma called morphea. How were you diagnosed?
Have you not been diagnosed yet? I'll have to look this one up. -
I haven't got a firm dx yet but hope to, one way or the other, soon.
When i was 21 strange brown spots appared on my arm, back and thigh. Seen by several doctors - was told that they were birth defect. The spots did not hurt nor did i have other symptoms so just went on with life. Got married had 5 childern .... 12 years ago wanting to see if new lazer treatment might remove ugly brown spots i saw over 10 doctors and this group said they were because of some virus i must of had when i was 21 and their was no treatment to remove them. Once again they did not hurt and have remained unchanged all these years so just resolved myself they would always remain a mystery.
Then Jan. 2011 dx with PBC and now having a computer and the internet i started researching PBC. It was durning this search i came across the connection between PBC and scleroderma (morphea). In 1992 dx with hypothyroidism.
I am so sick of doctors right now that i am not sure what benifet it would be to TRY to see if my spot are in fact scleroderma.
I would not be apposed to haveing my GP doing blood test if that would scleroderma.
Your thoughts appreciated.
inkedup -
Boy oh boy! I agree. Enough is enough! I also have 3 at this point in time plus a heart "problem". Truly don't want any more but do need some answers.
Hello Tumbleweed41 I am under investigation for lupus at the moment I also have hypothyroidism, aniemia and fibromyralgia and yes i think they are all connected ,Have you been diagnosed with lupus?xx
Thank you ladies for your answers.
No - I haven't been diagnosed with Lupus yet but it would certainly answer a whole lot of questions about things that are going on with me. My Dr. 12 years ago wanted me to go to a Rheumy because my ANA was over 1:1200, and my LFTs were not much better. Because of my job at the time things got put off. In '07 I was diagnosed with AIH with PBC overlap and then this year with COPD and a heart thing AVNRT (for short). I really don't want any more but from I've researched, Lupus would make a whole lot of sense with all this.
It was through the rheumatologist testing me for Lupus that I got my PBC diagnosis. She found that the liver function tests had been high for a few years then found the positive AMA.
I have a few auto immune things going on plus anaemia and fibromyalgia.
I had the daignosis of PBC in 2004.
In Dec. 2010 I had a big probelm with joints. Knees and fingers in particular. The fingerjoints were red painful and swollen, but unusually the apain and site flitted from one place to another overnight. A private appointment with a rheumatologist set me on the route for a diagnosis. First it was Pallindronic rheumatism ( a form of RA without the joint deformities) but further tests showed a positive ANA which led to further tests which showed up an anti DS antibody which is indicative of SLE. After starting initially on anti inflammitaries and pain killers I was given plaquenil. My problems have subsided.
I do know that in the past I had visited my Gp complaining of joint pains which came and went but I never got any furthter than an inital consultation. I'm sure it was beause I saw the consultant with an already diagnosed autoimune disease that he persued it to a diagnosis.
I am in the minority because I seem to have a daignosis in my late 50s and also because the literature and research papers I have read say that people are "unlikely to have PBC and SLE" , Well perhaps more research is needed!
Wow! You've been thru it, too. -
I'm 70 last birthday and I totally agree with "more research is needed".
Well guess what, I have had lupus for 40 years and just diagnosed with PBC. My lupus specialist has told me I am very special since the two are rarely seen together. I also have fibromyalgia and a few other things like Reynaud's and pernicious anemia (B12 deficiency). Tumbleweed, lupus can cause all of your other symptoms, or none. So frustrating. I did not have a positive AMA in blood and liver enzymes are not very elevated, so still confused about PBC diagnosis. I wish we could all take a vacation from these issues. Ruth
Kosy2. I have a different form of Scleroderma to you, it is also called systemic sclerosis.There are 4 types of scleroderma i believe, and yours luckily would not affect your internal organs ( i think!) I was diagnosed followed serious raynauds which led to a gangrenous ulcer on my finger and a 2 week stay in hospital. They found then that i was ANA positive, specifically anti centromere positive. Since then other symptoms have slowly appeared, typical of this form of Scleroderma. Following this they found i was AMA positive, now i,ve just been diagnosed with hypothyroidism.
Tumbleweed: As far as i am aware for lupus the ANA they are looking for is called 'double stranded DNA'. This is a characteristic marker of lupus. There are different subtypes of ANA which is very confusing. My GP said that autoimmune probs are the most difficult for doctors to get their heads around as they are so complicated. I have really had to do a lot of research and often tell GP's what things mean and what i feel i need!
inkedup. All 4 forms would be autoimmune?
It's pretty bad when we know more than the Drs. !! I know they are busy, b u t -- . Guess it's why they call it a "medical practice." -
The problem we all have is that when our automimmune system starts behaving badly it doesn't want to stop. You are more susceptable to multiple autoimmune conditons when you develop one. I have 4. x
Kosy2. I believe that there is an autoimmune correlation with Morphea of an ANA nature, but this can range from about 50 - 80% of people only, so i would imagine its not a definitive diagnosis. I expect you would need a biopsy of the skin along with blood tests to get a diagnosis. I think with all types of Scleroderma you are more likely to get other forms of autoimmune conditions, so i expect (yet again!) its a very complicated issue. As with PBC some people are positive for the condition following lots of other tests ie biopsies, but dont have the autoimmune positive blood tests. I expect this is why its so hard to get a diagnosis for some people sometimes.
inkedup, BIG THANKS! To bad I did not think about getting copies of ALL medical test years ago. I have had 2 biopsies but never saw the report myself, just took the doctors answer - "we could not find anything". You live and learn. I now keep a binder of every test and get a copy of all medical notes when hospitalized.
Unless I develope symptoms will let it alone for now.
Kosy2 that sounds like a very good plan. I am supposedly in a very early stage of PBC, pre-stage 1, and I don't have AMA and other markers like itching. SO I am in a wait and see mode now also. I will re-consider everything if symptoms develop or blood tests show something. We all need to take breaks from this once in a while. Trying to figure this out is a full time job.
Whoooeeee, ya'll !! It sounds like this could get very complicated. It seems that in order to try to have a "peace" about what is going on in our bodies we need to "push thru" and get to the answers, whether we like them or not.
Some Dr.s can be a real pain in the backside and then again there are some that really try to help you, they're just hard to find sometimes. -
I think we all need to do as much research on our own as we can, keep a notebook (or something similar), and when we go to the Dr./GP, we go "loaded for bear" as we yanks say. lol. Don't let the Dr/GP bluff you! Make him/her answer your questions and if he/she won't, GO FIND A DIFFERENT ONE!!
If we all work together, present to each other the answers we've found (and where) maybe we can find a breakthrough. hmmm??? I know that those of us who have been around for a while with this stuff would really like to help those of you who are new - or you wouldn't be on here, so ladies and gentlemen - - - Let's give it the ole college try and see if we can lick this thing!! You just never know unless you try. -:))
NOTE** Some can do more than others but to those who can't do as much we will appreciate whatever you can "put in the pot".
P.S. lol ALWAYS TRY TO GET YOUR DR/GP TO GIVE YOU A COPY OF YOUR LABS and at least once a month or so get a copy of your medical records, so that if/when you change Drs/Gps you will have it all with you. Also, ALWAYS carry a list of diseases and medications in your purse/wallet in case of emergency.
Ok, I'm done for now. LOL Have a wonderful day/evening. -
i think if you have auto immune stuff going on there should be such a thing as an auto immune specialist which you can go to who will run through all the bloods/tests with you so you can get a proper diagnosis and the right meds.
So many of the symptoms of the auto immune stuff are the same with aches and pains and fatigue but are treated differently.
Of course the tests would need to be repeated annually as we seem prone to picking up others along the way.
Hello, Zipitydoo
LOL!! I think we are just human magnets when it comes to this stuff. We come close, here in the States, with having an AI specialist - ie: Gastroenterologist/Hepatologist and the Rheumotologist. I have yet to get to a Rheumy but my understanding is that they know more about the broader range of AI than a G/H. I have been told that there are about 120 diseases that come under Auto Immune. - YAY!! LOL. I already have more than I want - don't want any more. -
At the time that I was diagnosed with AIH/PBC, the Dr. (G/H) had 12 - that's twelve!! - vials of blood drawn. I told the lab tech. to leave some for me. -:). Then I started with labs once/week.- We gradually brought it down to once every 3months - that's over a 4+yr. period. Once a year would be awesome, as long as no "symptoms" popped up along the way.
I know the feeling Tumbleweed. I have been having so many bloods taken that now when a needle goes in my veins move and hide.
I have seen a rheumatologist, gastroenterologist, hepatologist, cardiologist, dermatologist and a neurologist all in the past 2 years. Am running out of ologists to go to so an autoimmunologist would be good if there are any around.
LOL!! I'm with you, -
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