Quick explanation please.

[davtay]

Good evening , I’ve just been diagnosed with lupus to go along with the rest of my problems.

Could somebody please explain in stupid terms what Lupus is.

I’ve also got myloproliferative disorder with Jak 2 positive

Thanks in advance David

[lupus-support1 Administrator]

I would be happy to help you and recommend you join LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked which is specific for SLE.

healthunlocked.com/lupus-su...

Systemic lupus erythematosus is an autoimmune disorder and a genetic cousin to MS, rheumatoid arthritis and type 1 diabetes.

Whereas MS specifically attacks the myelin sheath, in lupus, every body system can be attacked: skin, blood, brain, kidneys, heart, lungs, muscles, joints, tendons. Our bodies have a system whereby foreign bodies are seen as enemies or invaders, our immune system kicks in and fights bacterial infections and viruses.

In SLE, however, our immune systems are over active. Instead of attacking foreign bodies, they are unable to distinguish between "friendly" and "foreign" bodies!

Up to 40% of people with SLE also have APS.

During the child bearing years, the ratio of women to men having SLE is 9:1. During childhood and later in life, the ratio is about the same. This suggests hormones are involved by the precise cause(s) of SLE remain a puzzle, as does how and why, we get SLE and why certain groups, such as Afro-American women, are more prevalent.

I will send you a private message. Please feel free to ask as many questions as needed. We specialise in free information and online psychological support.

With good wishes,

Ros

[davtay in reply to lupus-support1]

Thank ever so much for your reply. I had an appointment with my haematology doctor and to be totally honest I just shut down and nodded wher I thought appropriate.

The last 2 1/2 years has just been such a roller coaster.

I had my 1st stroke in 2016 and 3 other neurological events to date , also a small heart attack January 2017.

Every appointment they seem to throw something else at me and to be honest I’m at breaking point.

[HollyHeski Administrator in reply to davtay]

Can't answer re lupus but please don't feel alone - break it down & ask a question at a time?

Its very scary and frightening to begin with - please ask as many questions as possible we will answer with our own experienced as possible.

We totally understand how you feel - you've made the first step - next step is for us to answer....

[MaryF Administrator in reply to davtay]

Many of us on here have a mix of diseases, I also have Lupus, many of us are on multiple forums, for all the extra information. So the extra forum mentioned above is a good idea alongside this one.

I hope you have a consultant who fully understands your condition(s), we have a list over on the right hand side of the forum, under 'pinned posts' and also some on the charity website: ghic.world/ I will also add that quite a few of us, go off and order our own blood tests to carefully look at whether any Thyroid issues are involved, plus of course B12 levels, these two things often get missed and can make you even more ill alongside the diseases you already have. Standard testing is not great for B12 or Thyroid in particular. Also make sure your vitamin D, Folate and Ferritin levels are also monitored.

Basically we try to keep our flares if possible to a minimum, Some people end up on Plaquenil which seems to help a of people calm things down, alongside other medications.

Try if you can for any future appointments, keeping your medical history in bullet points, plus your symptoms, also mention of any other family members past and present with autoimmune disease, also any questions you think you may wish to ask, this way the next appointment might not feel so overwhelming. MaryF

MaryF

[lupus-support1 Administrator in reply to davtay]

Dave,

It seems to me your feelings are very normal. If you want to talk to me, send me a message.

I am here to understand and support you.

With good wishes,

Ros

[davtay in reply to lupus-support1]

Thank you.

[davtay]

Thank you Holly. I was first diagnosed with myloproliferative disorder 13 years ago . Which to be fair was ok never really understood it what it was I was more concerned with them keep on about removing my leg due to the clot , just becoming a father to twin boys all I could think about was not being able to play football with them. So just kept taking my chemo tablets daily all was well. That was until my first stroke in 2016 which following numerous blood test scans etc.. they discovered my blood had started to mutate with the Jak2 gene. Follow three years I had another 3 mini strokes/tias and a heart attack which now they have diagnosed me with lupus. I have to take between 30mg & 19mgs of warfarin daily just to get my INR to 3. 500mg twice daily of hydroxacarbamide chemo tablets.

To be honest I just don’t know enough about what is happening to my body or what to expect for the future.

I have a damaged knee cartilage and all the surgeon tells me is they don’t want to operate due to the complexity of my medical conditions. So where does that leave my future.

[KellyInTexas Administrator]

Learning along with you, Dave. What a rough appointment. Really a lot to take in. Warmest of thoughts your way from Texas.