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Posted By : Diamond20_UK - 7/17/2017 4:15 PM
Hello Everyone,

My name is Terry, i've not been on the forum in some time and would like to introduce myself properly smile

I've had 31yrs off ailments and in 2008 i was diagnosed with Lupus as it was mimicking ringworm, doctor sent me to a Dermo who told me it was psoriasis plus i had Raynauds, he did 9 blood tests and when i went back to see him, he told me i had SLE and also SCLE of the skin which mimic's other lupus skin conditions also.

Then i was referred to a Rheumo who did another 12 tests besides body temperature in a flask lol and i was then diagnosed with the following below:

Secondary Sjogren’s syndrome
Raynaud's phenomenon
Scleroderma (Crest syndrome)
Antiphospholipid Syndrome

The Rheumo said with my past history of epilepsy/ strokes and other conditions i was born with Lupus plus also found out my sister also as it so it's an inherited condition.

I've many more issues which are in my signature but to help control the lupus etc i take plaquenil, methotrexate, paracetamol & ibuprofen besides other meds for my other conditions.

I look forward to getting to know members a lot better and sharing experiences.

Terry smile
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Posted By : Butterflake - 7/19/2017 11:38 AM
Hi Terry. Welcome back to our forum. It's very nice to hear from you, but I'm so sorry to hear of all your diagnoses. Just the diseases you mentioned are so much for anyone to go through. I took methotrexate years ago, but it only helped for several months. I know many folks have good success with it and I hope that you do also. So many folks have such a hard time finding medication that works.

I noticed your bipolar disorder. I have major depressive disorder. Sometimes I wonder how everyone else can cope with Lupus and all the syndromes that go with it and I can't. I usually just tell myself that I inherited poor psychiatric brain chemistry. My Mom had it too. I rarely read any of the other forums, but I would probably gain some insight if I did.

Are you taking a blood thinner for your antiphospholipid syndrome? And how bad is your scleroderma? Answer when you get a chance. I'm certainly interested in hearing more from you. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Diamond20_UK - 7/20/2017 5:46 AM
Hello Butterflake and thank you for the warm welcome smile

I've got so many overlapping like yourself, it's a nightmare at times trying to think which is causing what...I used to know but as each year goes on the flares get worse besides symptoms but I've done some research and studying on them besides my hubby lol

Methotrexate is an hard chemo med for some people to handle with the side affects, i've been lucky with just the one diarrhoea which can last from 2 days to a week according to how my IBS is at the time. My rheumo wanted me to think about Rituxan and when I said yes, he said no because of my organ involvement.

It's a shame you can't read into it but as the old saying goes...ignorance is bliss in some cases, as I thought all sorts at one stage with so many coming at me plus the bipolar I must have had from a kid as my OCD started then and the depression came later, i'm more down and crying than having ups and like yourself mine must be inherited as my moms mom apparently was a nervous wreck and my moms sister lived on lithium all her life.

Yes I have to have a blood thinner as I had DVT through my left leg and warfarin tabs besides injections never took the reading to 2.5 which they needed to thin the clots, so the rheumo tested my D'Dimer levels which came back ok, so I take baby asprin 75mg daily because of my other meds.
My Scleroderma as ruined my toes underneath as I have crest build ups on the edge of my toes which goes hard and I have to peel off but it's making the toe skin less, i have crest build ups on my finger knuckles which go a yellow hardness and i peel those off, my fingers are going twisted and my knuckles are raised and causing hand cramps so i can't do a flat hand no more, toe nails and finger nails have gone thick and hard to cut, it's caused me to have lesions on my fingers also...my dermo as a lovely portfolio of pictures blown up and stored in my files. My lungs are affected get bad inflammation, acid reflux at times but with so many overlapping like i said it's hard...i have to use Palmers coconut butter to help my skin to keep soft plus the sjogren's dries my skin out.

Oh i could go on but it gets a joke wink as we both know.

Big hug Terry
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Posted By : Bsime - 7/27/2017 12:58 PM
I also have mctd with symptoms of sle lupus and polymyositis. Also experienced autoimmune hepatitis 3 years ago brought on by lupus which stopped as mysteriously as it started. Feel free to ask any questions. I have been on this journey for the past 13 years and both lupus and PM were severe/extreme with complications and multiple organ involvement.

In regard to lupus being hereditary that has never been shown. The theory is that we inherit a set of genes which predispose our immune system to a disruption. It is entirely possible for members of the same family to get the same AI disease. I have a younger sister who also has lupus and MS. AI diseases do run in families but not usually the same but if the genes and triggers are similar it is entirely possible to have more than one family member with the same disease.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Post Edited (Bsime) : 7/27/2017 1:02:12 PM (GMT-6)


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