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maisie
07-01-2013, 05:25 AM
My dermatologist just phoned to tell me that the biopsy of the rash on my thigh shows that it is massively inflamed and is strongly suggestive of systemic lupus when combined with my blood results and other symptoms. He has also speculated that my clotting problems (6dvts and2 pes) previously diagnosed as protein c deficiency maybe related.
He's prescribing steroid cream and Sun protection and is contacting my nephrologist who I see on Wed and the rheumatologist who I see for the first time next week. He says they will have to work as a team to ensure that there is no further organ involvement.
It's good to finally have a diagnosis but a bit frightening too. Is this the approach that other doctors have taken with those of you who have been diagnosed for a while?

Saysusie
07-01-2013, 08:56 AM
Hello and Welcome :-)

My initial diagnoses was many, many, many years ago and like you, it started with a biopsy of a lesion. My dermatologist biopsied a lesion on my arm and then took a sample from my butt (an area that almost never saw the sun) and compared the two. Also, like you, the results of those biopsies along with my test results eventually confirmed a diagnosis of Lupus.
Also, like you, my dermatologist, internal medicine doctor, and rheumatologist worked together, as a team, to come up with a treatment regimen and they continue to work together (as a team) for my continued treatment plans.
I am sorry that you have possibly been diagnosed with this ailment, but please know that, with the appropriate lifestyle changes, an effective treatment regimen, and a positive outlook, you can manage this disease to a point where you can maintain a relatively normal lifestyle. We are here to help you in any way that we can. I am glad that you found us, please do not become too distressed. Welcome to our family!

Peace and Blessings
Namaste
Saysusie

BonusMom
07-01-2013, 10:34 PM
Welcome to the WHL family.

My diagnosis was almost incidental. I was part if a research study for Gastroparesis and a slew of blood was drawn for testing. The results, along with symptoms that had never been linked together, led to a diagnosis of SLE and Sjogren's Syndrome.

I have never had the classic butterfly rash on my face. I'm not sun sensitive. I have had, on occasion, bilateral rashes in the exact same spot on my arms and legs that itch like mad.

One thing's for sure about SLE-no two people experience a flare or symptoms the same exact way which makes getting a diagnosis for some really difficult. I'm glad to know that you seem to have a cooperative team working together on your behalf.

maisie
07-02-2013, 03:31 AM
Thanks for your replies and interest.I have only waited 8 months for a diagnosis so I think that I am more fortunate than most. It helps a lot to hear other people's stories and to have support from others like yourselves.
Thanks so much

maisie
07-03-2013, 12:04 PM
As people have been kind enough to respond to my previous posts, I thought that I would give an update and ask for a bit more advice.
I saw the kidney specialist today and she agrees with the dermatologist that I have SLE. She has suggested a kidney biopsy to a certain if my lupus is the cause of my kidney probs. I am worried about this as I have a clotting disorder and take warfarin. She says that they will work on providing coag cover from next week with a view to doing the biopsy the following week. Has anybody else had this done whilst on warfarin?

steve.b
07-04-2013, 06:21 AM
I have not personally had this ....... but I have been a family member here for over a year ..... and I can remember others talking about it, sorry I cannot remember there names. but I can remember people on warfarin having biopsies. hopefully one of them will read this and tell you there experience with it.

Jaynie
07-04-2013, 10:05 AM
Hi.

I'm not on warfarin, but I almost had a biopsy last year. My rheumy says that it would pinpoint my condition and the stage I am at, but even tho he said that he also said that he won't do it. Not until I am in a flare and need to go onto the next stage of treatment (which would be chemotherapy). When I started plaquenil my clinical tests all improved and he says the risk of the biopsy is greater than the need to assess my severity if I'm not currently flaring. A few drs have scowled at my explanation, they like to have it on paper and in front of them, but my renal dr said "why do a biopsy to look for what we know is there already?"
I want to say that I'm sure the drs know what they are doing, but......SOME do.

I think my doc was right...if my treatment isn't controlling a flare then i'll do the biopsy with a view to grading how aggressive the treatment should be. Other than that I'm avoiding it!

Sorry if that's not helpful. For me waiting has worked and I'm not flaring anymore and I didn't have to go through the biopsy (I'm pretty sure they would have done a biopsy straight away if it didn't have possible serious complications)

Sorry if that's not helpful. And that's only from my position. We're all different.

Love to you
Jx

luci
07-04-2013, 12:18 PM
I am very impressed that your dermatologist made the statement about working as a team for your care. I have found this is not always the case. I do not take warfarin but have friends that do. I wish you all the best.

maisie
07-04-2013, 01:02 PM
Thanks Jaynie it's helpful to have other people's experiences to compare. Today the renal support nurse phoned me and explained that they want to know whether or not my kidney probe are caused by the lupus or something else as this would effect my treatment. He was very helpful and explained that I will spend the day in the hospital on 15th and they will measure my INR and then decide on the correct dose of clot buster and teach me to inject myself. Then at the end of the week I will have the biopsy and have INR tested again. I may have to stay in overnight to be monitored and then they will put me back on the Warfarin.He was very reassuring.
Yes I am lucky with my Dermatologist. By the time I got to the kidney clinic on Monday he had sent them all the skin biopsy results as well as organising a change of rheumatologist to the leading lupus specialist in the area.

Jaynie
07-29-2013, 11:05 AM
Hi Maisie!

I was worried that my reply would make things more complicated for you. So glad it didn't!

Where in the UK are you? I travel to addenbrookes and see Dr Jayne (clearly he was made for me since we share the name!

Jx

maisie
07-30-2013, 12:43 AM
Hi Jayne
I'm in liverpool. The biopsy has been done and it wasn't too bad I'm just waiting for the results. my rheumy explained that the docs want to be absolutely certain that the Lupus is in the kidneys before upping the level of treatment. I believe that addenbrokes is a centre of excellence isn't it?
Maisie x

maisie
07-30-2013, 11:50 AM
Hi Jayne
I live in Liverpool and have consultants at the Royal and Broadgreen. I understand that addenbrokes is really good.Sorry if you get two replies but I wasn't sure that I sent the first one
Maisiex

Jaynie
08-04-2013, 06:22 AM
Hi!
Yes Addenbrookes has always seemed very good with Lupus. I guess Liverpool makes it too far to travel to. It used to take me two hours to get there, but if I have a silly early appointment (8am) the traffic and new road make it an hour and a quarter.
I'm really scared of having a biopsy. Have always been grateful that they haven't deemed it worth the risk!

Jx

maisie
08-04-2013, 02:15 PM
Hi Jayne
I had the biopsy because I have blood and protein in my urine and my kidney function is down. My hermit explained to me that my treatment would be different if the lupus is in my kidneys. I am currently on Plaquenil but would 'go up a gear' if there is kidney involvement so I was agreeable to having the biopsy. It really wasn't bad at all. It's usually done as a day case but I had to stay in overnight because of my clotting disorder. The warfarin/Fragmin thing was a gaff but if you don't have clotting problems then it wouldn't apply to you.
If you have to have a biopsy please don't be too worried - it's ok.
Great to speak to someone from the UK
Maisie x

Jaynie
08-08-2013, 10:12 AM
Still terrified!

But I'm not having one. I'm lucky, despite the blood/protein/kidney function issues the Hydroxy (Plaquenil) settled all that down so the dr decided to leave the biopsy for now.

I know I'm a chicken! I was going to be brave but then my dr said there was no point is the plaquenil was working. So so glad! You are very brave!!

*bows gracioulsy*

Jx

maisie
08-08-2013, 12:13 PM
Hi Jaynie
I think as a rule it's best not to have people stick pointy things in your kidneys if you can possibly avoid it!!!!
How long have you been on Plaquenil?
PS I meant to write rheumy in my last post,not hermit - stupid predictive text. I would hate for you to think that The health care of the people in Liverpool is in the hands of hermits, sooth sayers and shamans!
Maisie
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