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Hi All:
Yesterday I had a lupus treatment with a new trial medication. I had to stay over night at the research center. As if this morning all is well, there have been no side effects?
If this experiment can help others with lupus then it is worth it.
I only have about 3 more hours to stay, then I can go home!
Yep, as usual I'm barefoot, and yes, the medical techs are use to it.
Wishing all of you the Best and
A MERRY CHRISTMAS!
👣👣👣👣👣Tiras👣👣👣👣👣👣👣👣
THANK YOU for participating the the trial !!!!
The side effects of my current SLE medications are mind bending and makes me nauseous.
With your help in this trial - that may come to an end one day.
: )
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If I can help one person it is worth all I go through.
I myself have had to go barefoot for the last 2 years. I have lupus rashes/blisters on to of my feet especially on my right foot. If I wear shoes or even sandals, they will rub my feet raw and I will start bleeding. So, yes I will try new medications.
On a lighter side, I have been barefoot for so long now that it feels natural. I don't want to wear shoes!
👣👣👣👣Tiras👣👣👣👣
Ha !
I got into trouble for being bare foot when I was in hospital not so long ago. A nurse gave me a good talking to about the existence of shoes, socks and slippers.
Not due to Lupus effecting my feet though. That sounds really nasty.
I'm from rural Australia - quite a few of us grew up bare foot.
I agree. Shoes are oppressive ! Down with shoes !
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I agree, barefoot is better. Other than the lupus issues (which has nothing to do with going barefoot) my feet have done better. I have not had any ingrown nails. Not wearing shoes my feet are not in sweaty bacteria filled shoes. I have done some research and I find that it is better to be barefoot. There are more benefits to going barefoot. However, you have to get the bottom of you feet tough to do this. After 2 years of going barefoot, I can walk on any type surface now, rocks, cement, even hot asphalt.
I do keep my feet neat and do get pedicures so they don't look unkept. (I am a guy but, my wife suggested this).
I am from the souther part of the Untited States in the state of Alabam, and we grew up going barefoot also, so I understand.
👣👣👣Tiras👣👣👣
Great feet think alike.
And shoes have a lot to answer for.
And yes.....I almost got to the point of asking my vocal nurse about bacteria in shoes and socks.....almost. I'm glad you've researched it !
I have a bit of a strange balance disorder and the one thing that relieves it is going barefoot outside. If I go out in shoes it just doesn't give the same benefit.
Sometimes I wonder what shoes have done to our balance & nervous systems. Let alone the toe mangling (and leg and back strain with high heels) I tried high heels once - had a panic attack.
Must admit, my foot limit is hot asphalt - although I've performed many a bare foot asphalt bouncy run.
Compared to my contemporaries my feet are fairly soft soled. I think 'townies' as we call them here over estimate how prickly nature is.
Nothing nicer than the feeling of nature under your feet.
👋👋👋👋YAY BFG 🌟🌟🌟🌟👏👏👏👏
Only 2 more hours to go 👍👍👍👍
Did they tell you anything much about this trial medication? I guess they'll see how you get on with this first infusion before giving you any more
Am hoping it makes a pos diff for you
So glad to see you posting again
Take care
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You Too ! (posting that is) 2.00 am here. Better go to bed.
: )
😆seeing you pop up always makes my day, buddy 😘🍀😘🍀 going to do my feet/legs rehab & then it's nap time 💤💤💤💤
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Coco:
I had time today waiting at the research center. Once I get to leave it back to being busy with Mom and Dad. I may not get much time.
👣👣👣👣Tiras👣👣👣👣
Take care BFG...LOVE to you all 🍀😘
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Hi Coco;
Just to let you know, we had to take Dad to the hospital last night. His oxygen dropped to 42 and he started Turning blue. They got him stabilized for now. They told us he probably won't come home from the hospital.😢😢😢😢😢😢😢😢😢
👣👣👣Tiras👣👣👣
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Before I left the clinic, I ask if it would help the lupus rashes/blisters. I was told It wold not have any effect on the skin. They told me it was to slow the lupus from attacking the internal organs?
I guess just wait and see?
👣👣👣👣Tiras👣👣👣👣
Glad you had a chance to ask 👍👍👍👍...over here medics have told me this is "watchful waiting", which I quite like cause the term helps me feel included in the process: as if my observations of how I react to a med are just as important as my medics'. Who knows, maybe your rashes/blisters will damp down somewhat in response to this infusion? If they do, you & your medics will have learned something important
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I don't think they release much info re research treatment and if blind research, you may not even be on it.
Hi just wondering what the treatment entails..and. Of course hope it works .any research is good .
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Hi Barb:
The research treatment is..........
A month a go I went to the center and they done blood work and drew urine out of my bladder. I had to wait for those test results to come back to see if I was a candidate for this paticular lupus study. I was!
Monday went through the same process before the medication was injected. They injected the medication in lower right side of the abdomen. The needle was not very large but, there was a medium size syringe full of yellowish medication (not sure of the CC). Every hour for 6 hours they took vital signs and check the injection site. After that it was checked every 4 hours. I had to stay over night. The next morning (yesterday) they done the same procedure of drawing blood and urine. I have to go back tomorrow (Thursday) and they will do the same get blood and urine. Then it is once a week for a month, then 2 times a month, and then go 1 last time a month later for blood and urine check. (This will end in March).
I am also in a study for lupus skin rashes/blisters. I go every 3 months for that. I get checked head to toe and everywhere in between (yes even private) areas). Completely nude for this study with many people in the center. I get covered head to toe in a (for lack of description) gel type substance that has to absorbe in the skin for about 30 minutes (yes, I'm completely nude entire time usually a 3 to 4 hour process). They use a special light of some kind and examine all of my skin thoroughly. There are 2 females in the study also. We are all in the exam area at the same time.
I am a male, and I am the only guy they have to study, so they use me for any studies they can.
As I have said before, if I can help someone else, everything I go through is worth it. All of the other people feel the same way also. That is why we do the studies.
Lupus has changed my life (had to go barefoot for the last 2 years because of rashes/blisters on right foot) but my motto is;
👣I WILL NOT LET LUPUS CONTROL MY LIFE👣
Wishing you and your family the best!
And
MERRY CHRISTMAS
👣👣👣👣Tiras👣👣👣👣
Good luck with the treatment Tiras, I hope that it helps you, and lots of other people. 🍀 👣💐
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Had blood work and urine test and cardiogram done today. So far no side effects? Let's see what happens Monday, that is next check?
👣👣👣👣👣👣Tiras👣👣👣👣👣
Hiya Tiras
What trial is it? I'm due to start on one in the new year, awaiting the results of the screening at the moment.
L
😀👍🏻 X
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The study is a new medication to help to slow the lupus from attacking the internal organs.
At the research center they told me that they had another study for me when this one is over in February.
I am also in a long term study on skin rashes/blisters. I only go every 3 months for this study. They track and photo the rashes and or blisters caused by lupus. It is basically a full body exam from head to toe. As of now I take no medication in this study.
I hope your study goes well, what will they be studying on you?
Wishing you and your family the best!
AND
MERRY CHRISTMAS
👣👣👣👣Tiras👣👣👣👣
The study is for the new drug Anifrolumab.
Hope all goes well for you and you have a great Xmas and new year too 😀🎄🎄🍀
What is the drug.
Lupus or MS? 
Is it Lupus?
lupus?
Issues ordering Lupus Book from Lupus UK
Male with lupus? Treatment advice
