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Discussion Starter · #1 ·
I just joined and wanted to say HI. I am going to have to play around here and see what I am doing! Not even sure that this post is going to look right! lol

I am 36 y.o. and have a long list of illnesses. I have SLE, RA & OA, Fibro., Raynaud's, history of strokes (reason unknown) and TIA's, and a yet to be dx'd heart condition....I feel like I am forgetting something. LOL Yes, I have troubles b/c of the strokes (hence the memory problem).

I am hoping to get some ideas from you all here! I need all the tips that I can get. I am still new to all this even though now they think that I have had SLE since I was a young child and my first stroke was in-utero!!

I would like to get treatment ideas. I am on a TON of meds and just started on 2 patches.

Thanks in Advance,
StrokeChick
 

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Hi StrokeChick,

Welcome to the Lupus Site. I am 47 and have a list of diseases and syndromes also. My current disease modifying regimen is 400mg daily of Plaquenil, 20 mg of Methotrexate weekly, 50mg of Enbrel injected weekly and I just started a series of Cytoxan and Pulse Steroid Infusions that will be once a month for 6 months. I have another whole list of medications for all the other things that come with multiple conditions. It will be 20 years this December from when I was first diagnosed.

I am curious if you have been checked for APS? It is a blood disorder that sometimes occurs with Lupus. Strokes and TIA's are major symptoms of it.

The 2 patches that you have started are they both pain medications? I ask because I have 2 different patches for pain control. One is fentanyl and it is a narcotic and the other is Lidoderm which numbs the pain.

I think you will find a good deal of information here in addition to some good cyber friends. I know I have in the past years that I have been involved.

Take care,
Karen
 

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elisabethm
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:welcome: Strokechick, you will find loads of new friends on this site.As there is allways some one that will be able to give you some good advice on any problems that you have.But we also have a laugh on here aswell.I am 53yrs i have a son and daughter 4Grandsons one is 9 then two 6years ten days between them and our latest addition is TJ he is 12weeks Do you have a family.My meds are for the lupus is Plaquenil and a list of other meds for other problems,Hope to here from you again Elisabeth
 

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Discussion Starter · #4 ·
raggedyann1;505867 said:
Hi StrokeChick,

Welcome to the Lupus Site. I am 47 and have a list of diseases and syndromes also. My current disease modifying regimen is 400mg daily of Plaquenil, 20 mg of Methotrexate weekly, 50mg of Enbrel injected weekly and I just started a series of Cytoxan and Pulse Steroid Infusions that will be once a month for 6 months. I have another whole list of medications for all the other things that come with multiple conditions. It will be 20 years this December from when I was first diagnosed.

I am curious if you have been checked for APS? It is a blood disorder that sometimes occurs with Lupus. Strokes and TIA's are major symptoms of it.

The 2 patches that you have started are they both pain medications? I ask because I have 2 different patches for pain control. One is fentanyl and it is a narcotic and the other is Lidoderm which numbs the pain.

I think you will find a good deal of information here in addition to some good cyber friends. I know I have in the past years that I have been involved.

Take care,
Karen

Karen,
I hope I am replying correctly to your post. I am not used to a message board like this! lol
The patches are Duragesic for pain and Transderm Scop for nausea.
I'll ask about the Lidooderm. I might need that too. I have been struggling while getting this med in my system b/c I have to wait it out to regulate itself, which means no other pain meds yet. Oh what I would do for some Vicodin's.

What is APS? I have had mutliple strokes & TIA's & something is going on with my heart that will require more testing, but we are waiting til summer when my kids are out of school b/c I will have to go to Atlanta to Emory for that.

Thanks!
StrokeChick
 

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APS= Anti-Phospholipid Syndrome. It's also known as Hughes syndrome after the doctor that first identified it. It can be a stand alone syndrome or it can also be found along with SLE - roughly 30% of patient with SLE will test positive for antibodies that make the blood more likely to clot resulting in strokes, miscarriages (especially later term ones), and DVTs/pulmonary embolisms. Lupus anticoagulant testing and anti-cardiolipin antibodies (and anti-Beta2-glycogen antibodies need to be tested for along with symptoms like strokes in order to be diagnosed with APS.

There are a few other rather common causes for strokes such as Leiden Factor V; I would imagine your doctors have already tested you for most of these things but it is something I would ask about. I would also ask about going on preventive medicine to guard against further strokes. Obviously with your history birth control hormones is quite ill advised too (as is smoking)!

Welcome to the site and I hope you can soon find an answer to your heart concerns as well. Take care...
 
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