I really want to be part of finding a solution to our issues....I realize they may not be able to halt my diseases but hope to be a part of something to detect and prevent this from affecting anyone elses lives...I'm especially worried about my children getting it from me. As far as I know I'm the only one in my family with autoimmune issues but.... I was a child with allergies....common ones, hayfever and cats...also have PCN allergy. I've been an anxious person and my body tends to overreact with panic attacks since my 20's, also when my Hashimotos Thyroiditis started...I remember having rashes in the sun back then too. I mentioned it to ER crew back then...after watching a show (oprah or something) talking about Lupus and they laughed at the thought that I would self diagnois from a tv show...now I'm not so sure I was off. Turned 50 and finally got that diagnosis---after years of trying to figure out what was causing the terrible exhaustion and pain. I felt like a hypocriondiac or everything was attributed to my diabetes. Now that I know I was right....that something was terribly wrong and basically causing my body to attack itself....I want to find a cure or at least a way to stop it in it's tracks. Has anyone heard of people who suffer with autoimmune diseases also tend to suffer with anxiety or allergies?
Hey sweety. I am so proud of you dor making this choice. I am currently in a drug study at duke in NC. Dr. Megan Clowes and her staff are amazing. Doing this drug study has been my goal since i got lupus. I did alot of thinking and praying. The studies can be risky, verz risky. At times they do not know how the meds will affect you. They may know how the meds work for most, but it wont for u. The side effects may be worst then the lupus… Um not trying to get u to not want to fo this, but i do want u to know this! I am all for ppl helping research! I would love to speak to u in detail! I made myself homeless to find a Doctor that can help me help research! If u want to u can text me at 760 935 7280 i will be glad to tell u anything u want to know! Well if i know an answer
Thanks for the info...do you have a website for them? Do they have you move there to do the study or fly you back and forth? I'm basically homeless now....but I also just got diagnosed and haven't tried any other trt yet....don't they want you to have failed conventonial trt first?
You are so welcome. No they didnt move me there. I moved here on my own. I had an apt. for July, but I was hospitalized in the middle of march. As soon as they let me out, I moved here. I called the nurse and left a detailed msg. and she called me with an apt. for the 30st of march. I had my first treatment done 2 and a half weeks ago. Dr. Clowes had me screened. They are looking for active lupus. I don’t have the website, but I do have the office number. She won’t put u in the studie right away. She will want to get to know u and your illness.
Hello PollyannaPam,
I have A1 Diseases over lapping autoimmune Diseases and i was told 2wks back that there's no cure for them just meds to help...the only way cures will come along is through people like "Sunshine" doing trials to see if they find something which will actually do the thing of stopping Autoimmune Diseases besides Lupus itself.
You are so great to share.....so where did you move from? What's NC like? As a Pacific Northwest native I'm always in the dreary cloudy boring weather. A sunny day is something to celebrate (which makes me wonder about lack of vit D being the culpruit as they are saying for so many things). I do know I have SAD and can physically feel awful the day before weather changes...and it lasts until it gets ok weather wise again. I think it's as much a change in pressure as sun...although give me a nice sunny day and I usually feel pretty perky (although the other day proved that wrong)....anyway...didn't mean to blab on about myself again (I feel I do that too much) Like a kid who finally found a best friend and yaks their ears off---It's just so nice to talk to people who get it. So I've been thinkng I should move to a nice warm sunny place and see if that helps....one thing I can't tolerate too much heat as I have hot flashes (or is there some sort of sweats from Lupus?)....maybe I've been blaming Menopause for too much. I think I will check out Seattle and Portland....maybe even California....for studies. I want to be tested for what came first to try to figure out why all the different autoimmune diseases so we can learn to turn it off before it's caused harm in our kiddos. I think somehow we need more education and funding for programs to evolve. Unfortunately, if a drug company doesn't see a possibility for making money there isn't much backing. I guess OHSU still does independant studies....we just need to get the govt to open it's fists and fund research for people not just lining CEO pockets (there goes my little anger issue again...sorry). I think my stages of grief are overlapping....I've been depressed so long now the anger is really getting bad.
sunshinespraypaint said:
You are so welcome. No they didnt move me there. I moved here on my own. I had an apt. for July, but I was hospitalized in the middle of march. As soon as they let me out, I moved here. I called the nurse and left a detailed msg. and she called me with an apt. for the 30st of march. I had my first treatment done 2 and a half weeks ago. Dr. Clowes had me screened. They are looking for active lupus. I don't have the website, but I do have the office number. She won't put u in the studie right away. She will want to get to know u and your illness.
Hi Tez....cute name.....so I feel pretty stupid for asking but what is A1 Diseases? And I agree Sunshine rocks! Do we keep getting more and more autoimmune diseases until our body is totally destroyed by our own survallience system. Hey, I should write about this illness as a science fiction novel.... Do you know if Lupus is the primary autoimmune process silently attacking and somehow pushing other processes like my Type 1 diabetes taking out my pancreatic cells or my hashimotos taking out my thyroid. Or does it just happen and start taking out everything else? And does there ever come a time in your life when you don't dwell in it and try to analyize everything....or is that just me and my coping mechanism.....and my healing can begin when I finally get to acceptance and can relax a bit and learn to love my new, restrictive life....finish mourning for who I once was.....
Tez_20 said:
Hello PollyannaPam,
I have A1 Diseases over lapping autoimmune Diseases and i was told 2wks back that there's no cure for them just meds to help...the only way cures will come along is through people like "Sunshine" doing trials to see if they find something which will actually do the thing of stopping Autoimmune Diseases besides Lupus itself.
Just a comment, Pam! You sure sound like you're having the same mental/emotional experience as I'm having. I'll be watching for answers! lol
I’m glad you are willing to partake. There are lots of good hospitals that do reproach studies. One thing u have to keep in mind is that you have to have been diagnosed for at least 6 month or longer for studies. Also most of them require u to be on stable medication. Stable medication means that they have to be build up in your system. Some drugs take 3 to 6 month to fully get In your system and work properly.
It does get hot here. Now the vitamin D issue is with all photosensitive ppl. Lupies can’t be in the sun or taming beds. So regardless of your location, u will have to take vitamin D. I stayed out In the heat for an hour today and got a little sun wile I wAs driving. Man I feel soooo bad now. My hands are shaky, my ears are pounding, my skin is supper pissed off… I just want to sleep now…
PollyannaPam,
The studies are a noble way to go. Sunshine is amazing - she is extremely brave, strong and also one of the most unselfish people I know. She has sacrificed a whole lot to be a participant in a study that will potentially benefit the rest of us. I admire Sunshine very much and keep her in my prayers for her sacrifices. You DO indeed ROCK Sunshine!
I am unsure of what all the requirements are for inclusion in a study. Sunshine listed some in the posts that she made in this discussion. I do know that they don't like to take you if you have allergies to any medications. There was a study going on in Austin and I asked my doctor about it. He said that the research studies won't take me because I have several medications that I am severely allergic to and the researchers will not take the risk with my type of medication allergy.
That being said, different studies likely have different guidelines.
To answer your question about do other Lupus patients suffer from Anxiety and other Allergies? YES we absolutely do!! I've noticed that many of us take Valium or Xanax on occasion for anxiety, I also take a non-narcotic anxiety drug at times called Vistiril. As I said above I have strange allergies to some medications as well as seasonal allergies (but everyone in Texas has those). I've heard much talk about allergies on this site though.
Have you joined the side group for Depression? It is a really great group connected with this one. If you click "groups" at the top of the screen, you will see the more specific groups that you have to choose from. :)
Your heart is very much in the right place with the studies! You will have to let us know how that turns out!!!
Hugs - Draginfli
Hi PollyannaPam,
If you don't mind me asking what's your name for short.lol
A1 Diseases are Lupus itself/sjogrens Disease/Raynauds and more because these are individual A1 Diseases, it's like my blood work will show sjogrens working high in my system and then Lupus trying to over ride it, if you get my drift and autoimmune Diseases are like psoriasis which i have which is another skin issue involved with DLE/ like Raynauds contains scleroderma which is an autoimmune disease the same as psoriasis and when you have this overlapping going on your system becomes a working mind field with so many complaints going on....over time i've 60% learnt what symptoms are coming from what but i have my days where my head gets lost with symptoms which are can't work out where they're coming from.
You can keep getting more autoimmune diseases but it's all according to how strong your body is carrying them besides the lupus in your body...mine are like they am because i was born with mine and inherited it off my parents, so i've got a good mixture of both parents plus my youngest sister as it also...it's down to finding the right meds to help ease what your going through.
I could write a novel on my life story concerning this.lol besides ailments it's caused down the years....well besides diabetes coming on naturally besides other things....Lupus can top that and bring anything on, which happens naturally...i can't say 100% as i'm not a doctor to diagnose but i'd say it's helping your diabetes regarding your organs....it does'nt start taking everything else it's like i said earlier it's according to how bad you have it in your system...if you have SLE then it won't help one bit.
I'm not being funny don't even start analyzing Lupus....i only found out i had it 5yrs ago and all i wanted to know was what i had and what the symptoms caused, look at life like this you've got it besides loads of other member's and there's nothing we can do unless a new super drug comes...you main concern is dealing with it daily.
ASlot of member's was like yourself when they joined and i've spoken with quite a few and they've learnt to accept it, yes their days can be hard but as long as you learn to pace your daily routines out slowly and don't put much pressure on your body besides resting in between it helps such a large deal.
((Love & hugs)) Terri xxx
PollyannaPam said:
Hi Tez....cute name.....so I feel pretty stupid for asking but what is A1 Diseases? And I agree Sunshine rocks! Do we keep getting more and more autoimmune diseases until our body is totally destroyed by our own survallience system. Hey, I should write about this illness as a science fiction novel.... Do you know if Lupus is the primary autoimmune process silently attacking and somehow pushing other processes like my Type 1 diabetes taking out my pancreatic cells or my hashimotos taking out my thyroid. Or does it just happen and start taking out everything else? And does there ever come a time in your life when you don't dwell in it and try to analyize everything....or is that just me and my coping mechanism.....and my healing can begin when I finally get to acceptance and can relax a bit and learn to love my new, restrictive life....finish mourning for who I once was.....
Tez_20 said:Hello PollyannaPam,
I have A1 Diseases over lapping autoimmune Diseases and i was told 2wks back that there's no cure for them just meds to help...the only way cures will come along is through people like "Sunshine" doing trials to see if they find something which will actually do the thing of stopping Autoimmune Diseases besides Lupus itself.
Thank you for sharing Terri, I was told a couple years ago it looked like Sjogrens, put on Prednisone and had moved out of state.. (back to Washington) and no follow up with a Rhumotologist (because we have none in the area). My poor family MD (who I've seen since I moved first to Port Angeles in 1984) has tried so hard to help me figure this out. At my wits end about finding a local Rheumotoligist (as in Seattle) I opened the local paper and saw a half page announcement of a "new" Rheumologist locally (well an hour 20 min away) but I jumped on it and am so THANKFUL FOR THIS MIRACLE OF DR. MAY....he is semiretired and lots of experience to know right away what was going on and being old school he spent a good hour with me on initial meeting and ordered the right labs to determine the diagnosis. My previous experience was poor with specialists....Endos who didn't pick up on Type 1 not Type 2 and just berrated me for not being a "good" diabetic....the Rheummy? (is that our short and sweet term for them?) spent a few minutes and just wrote me off as a drug seeker (that's my opinion because of working in the medical field and seeing so many so called professionals who talk about patients asking for relief from their pain...as just wanting drugs) anyway I'm off topic again and need to go.
But to answer your first question. My name is Pam and I considermyself a Pollyanna (as in the Disney movie...been made fun of for it...but I'm quite proud of wanting to see the love in everyone beyond their hurt and anger).
Tez_20 said:
Hi PollyannaPam,
If you don't mind me asking what's your name for short.lol
A1 Diseases are Lupus itself/sjogrens Disease/Raynauds and more because these are individual A1 Diseases, it's like my blood work will show sjogrens working high in my system and then Lupus trying to over ride it, if you get my drift and autoimmune Diseases are like psoriasis which i have which is another skin issue involved with DLE/ like Raynauds contains scleroderma which is an autoimmune disease the same as psoriasis and when you have this overlapping going on your system becomes a working mind field with so many complaints going on....over time i've 60% learnt what symptoms are coming from what but i have my days where my head gets lost with symptoms which are can't work out where they're coming from.
You can keep getting more autoimmune diseases but it's all according to how strong your body is carrying them besides the lupus in your body...mine are like they am because i was born with mine and inherited it off my parents, so i've got a good mixture of both parents plus my youngest sister as it also...it's down to finding the right meds to help ease what your going through.
I could write a novel on my life story concerning this.lol besides ailments it's caused down the years....well besides diabetes coming on naturally besides other things....Lupus can top that and bring anything on, which happens naturally...i can't say 100% as i'm not a doctor to diagnose but i'd say it's helping your diabetes regarding your organs....it does'nt start taking everything else it's like i said earlier it's according to how bad you have it in your system...if you have SLE then it won't help one bit.
I'm not being funny don't even start analyzing Lupus....i only found out i had it 5yrs ago and all i wanted to know was what i had and what the symptoms caused, look at life like this you've got it besides loads of other member's and there's nothing we can do unless a new super drug comes...you main concern is dealing with it daily.
ASlot of member's was like yourself when they joined and i've spoken with quite a few and they've learnt to accept it, yes their days can be hard but as long as you learn to pace your daily routines out slowly and don't put much pressure on your body besides resting in between it helps such a large deal.
PollyannaPam said:Hi Tez....cute name.....so I feel pretty stupid for asking but what is A1 Diseases? And I agree Sunshine rocks! Do we keep getting more and more autoimmune diseases until our body is totally destroyed by our own survallience system. Hey, I should write about this illness as a science fiction novel.... Do you know if Lupus is the primary autoimmune process silently attacking and somehow pushing other processes like my Type 1 diabetes taking out my pancreatic cells or my hashimotos taking out my thyroid. Or does it just happen and start taking out everything else? And does there ever come a time in your life when you don't dwell in it and try to analyize everything....or is that just me and my coping mechanism.....and my healing can begin when I finally get to acceptance and can relax a bit and learn to love my new, restrictive life....finish mourning for who I once was.....
Tez_20 said:Hello PollyannaPam,
I have A1 Diseases over lapping autoimmune Diseases and i was told 2wks back that there's no cure for them just meds to help...the only way cures will come along is through people like "Sunshine" doing trials to see if they find something which will actually do the thing of stopping Autoimmune Diseases besides Lupus itself.
Hello Pam,
We're building a nice novel here you know.lol
Prednisone is good for taking down swelling to the joints and any inflammation, i refused it being a steriod had them in the past years ago and always told myself never again....well i hope you have'nt got sjogrens as it's not pleasant in many ways...i've got secondary sjogrens which causes alot of issues and the readings just come in high with it again besides Lupus.
Well i am please you've got another rheumo and yes that's the short term for them...i'm due to see another new one who's irish so more bloods will be run besides tests as my boyd organs are rejecting medicines and he's more upto date regarding Lupus....i suffer with low sugar besides blood pressure also but my mom had bad diabetes and passed away with it.
Yes you'll find the love in we all as lupus does'nt totally rule our emotions as you can't afford to let it. xxx
PollyannaPam said:
Thank you for sharing Terri, I was told a couple years ago it looked like Sjogrens, put on Prednisone and had moved out of state.. (back to Washington) and no follow up with a Rhumotologist (because we have none in the area). My poor family MD (who I've seen since I moved first to Port Angeles in 1984) has tried so hard to help me figure this out. At my wits end about finding a local Rheumotoligist (as in Seattle) I opened the local paper and saw a half page announcement of a "new" Rheumologist locally (well an hour 20 min away) but I jumped on it and am so THANKFUL FOR THIS MIRACLE OF DR. MAY....he is semiretired and lots of experience to know right away what was going on and being old school he spent a good hour with me on initial meeting and ordered the right labs to determine the diagnosis. My previous experience was poor with specialists....Endos who didn't pick up on Type 1 not Type 2 and just berrated me for not being a "good" diabetic....the Rheummy? (is that our short and sweet term for them?) spent a few minutes and just wrote me off as a drug seeker (that's my opinion because of working in the medical field and seeing so many so called professionals who talk about patients asking for relief from their pain...as just wanting drugs) anyway I'm off topic again and need to go.
But to answer your first question. My name is Pam and I considermyself a Pollyanna (as in the Disney movie...been made fun of for it...but I'm quite proud of wanting to see the love in everyone beyond their hurt and anger).
Tez_20 said:Hi PollyannaPam,
If you don't mind me asking what's your name for short.lol
A1 Diseases are Lupus itself/sjogrens Disease/Raynauds and more because these are individual A1 Diseases, it's like my blood work will show sjogrens working high in my system and then Lupus trying to over ride it, if you get my drift and autoimmune Diseases are like psoriasis which i have which is another skin issue involved with DLE/ like Raynauds contains scleroderma which is an autoimmune disease the same as psoriasis and when you have this overlapping going on your system becomes a working mind field with so many complaints going on....over time i've 60% learnt what symptoms are coming from what but i have my days where my head gets lost with symptoms which are can't work out where they're coming from.
You can keep getting more autoimmune diseases but it's all according to how strong your body is carrying them besides the lupus in your body...mine are like they am because i was born with mine and inherited it off my parents, so i've got a good mixture of both parents plus my youngest sister as it also...it's down to finding the right meds to help ease what your going through.
I could write a novel on my life story concerning this.lol besides ailments it's caused down the years....well besides diabetes coming on naturally besides other things....Lupus can top that and bring anything on, which happens naturally...i can't say 100% as i'm not a doctor to diagnose but i'd say it's helping your diabetes regarding your organs....it does'nt start taking everything else it's like i said earlier it's according to how bad you have it in your system...if you have SLE then it won't help one bit.
I'm not being funny don't even start analyzing Lupus....i only found out i had it 5yrs ago and all i wanted to know was what i had and what the symptoms caused, look at life like this you've got it besides loads of other member's and there's nothing we can do unless a new super drug comes...you main concern is dealing with it daily.
ASlot of member's was like yourself when they joined and i've spoken with quite a few and they've learnt to accept it, yes their days can be hard but as long as you learn to pace your daily routines out slowly and don't put much pressure on your body besides resting in between it helps such a large deal.
((Love & hugs)) Terri xxx
PollyannaPam said:Hi Tez....cute name.....so I feel pretty stupid for asking but what is A1 Diseases? And I agree Sunshine rocks! Do we keep getting more and more autoimmune diseases until our body is totally destroyed by our own survallience system. Hey, I should write about this illness as a science fiction novel.... Do you know if Lupus is the primary autoimmune process silently attacking and somehow pushing other processes like my Type 1 diabetes taking out my pancreatic cells or my hashimotos taking out my thyroid. Or does it just happen and start taking out everything else? And does there ever come a time in your life when you don't dwell in it and try to analyize everything....or is that just me and my coping mechanism.....and my healing can begin when I finally get to acceptance and can relax a bit and learn to love my new, restrictive life....finish mourning for who I once was.....
Tez_20 said:Hello PollyannaPam,
I have A1 Diseases over lapping autoimmune Diseases and i was told 2wks back that there's no cure for them just meds to help...the only way cures will come along is through people like "Sunshine" doing trials to see if they find something which will actually do the thing of stopping Autoimmune Diseases besides Lupus itself.