View Full Version : New to site, not to Lupus

07-31-2012, 08:55 PM
Hello! I am not familiar with social networking at all so I began replying to posts and never introduced myself! I am not new to Lupus by far. I was diagnosed when I was 14. I am now 61. I had fatigue, joint pains in hands and hips, fevers, and kidney involvement. I was on prednisone for forty years. I had several flairs. When I was 42, my kidneys finally failed, I was on peritenel dialysis for 9 months then I got a transplant. It was a cadavar. I am doing just fine. I am still teaching, and I adopted 2 girls who are now grown. I do have hardening of the arteries due to all the prednisone most of my life, but my bones are fine. I currently am on 200mg daily of plaquinel. Currently wondering if I should take meds for my cholesterol as doctors want. My recent test was HDL 53, LDL 120. total 183, tryglicerides 47. I prefer not to. Anyone have similar situation?

07-31-2012, 09:42 PM
Hi Linda;
Welcome to our family. You are a long-time member of the Lupus family having lived with it for over 40 yrs. I have not, personally, had any experience with cholesterol or meds for that condition so I can't offer you any personal advice. I am quite willing to research it for you if you'd like.
I really just wanted to make sure that I welcomed you to our family and to let you know that you are amongst people who care and who understand. Please cruise around the forums, join any conversation that you'd like and/or start one of your own. We are glad that you are here.

Peace and Blessings

07-31-2012, 09:55 PM
Hey LindaJ. Welcome to the forum... "ugh" to the lipids. Your numbers are slightly better than mine. I'm over 200 total now, but with a similar ratio for all 3. My tri's are slightly higher though. They used to think my numbers were from my Hashimoto's Thyroiditis, but after my last couple "flares", they're not as sure. I'm apparently trying to digest myself, along with the food I eat, which ain't supposed to happen of course, so liver issues of some sort or another may also be influencing my numbers.

In the meantime, that's great that you're still teaching. I'm trying to make it to retirement age myself. A fellow I work with has had 2 kidney transplants. He doesn't have anything in particular that they've ever found in him (that he's told us), but his body will just arbitrarily attack his kidneys. He lost his 1st one at 35. He just got his 2nd kidney 2 years ago when his first transplant failed after 3 years. There's a lot involved in keeping them healthy in you (and yourself), isn't there? When my brother died back in 1991 (motorcycle crash), he donated his kidneys, corneas, etc., and hearing from someone helped by donors helps me very much still to this day.

08-01-2012, 12:55 AM
hi linda and welcome.

there are a few "more mature" members here.
i am slightly younger at 50.
i have had my lupus issues for over 35 years.

i am glad you have joined us.

08-01-2012, 05:35 AM
Hi Linda,

Welcome to WHL.
You are an inspiration to alot of our younger, just diagnosed members, because you have had lupus for 50 years and you are still going strong.
BTW, I am one of those more mature members, our slightly younger Steve is talking about, I am 56.
I am glad, that your kidney transplant was succesful.
About the cholesterol, I don't know, mine is always very good, even though, I eat all the "bad" foods. My friend eats everything, no fat, low fat, very little meat, no salt, bla, bla, bla and hers is high. She has tried the meds for a year and didn't see any result,but alot of side effects. So she decided to stop, because she feels, that this is just a big hype from the Pharma industry anyway.
Of course you need to listen to your doctor and then make a decision for yourself.
I am glad, that you have joined WHL.


08-03-2012, 09:54 PM
Hi and thank-you for the welcome! It's kind of exciting to get a reply. so far I've only replied to 'threads'. I've asked some questions before, but this is the first time I've found a reply! I have to play around with this site and learn more on how to use it. That is ok about researching it. I may try the meds for 3 months and see if it does miracles in bringing my LDL down below 100.....that is where they want it if you have hardening of the arteries....prednisone long time use can cause that. Talk toyou again!!

08-03-2012, 10:01 PM
I think that is so wonderful that your brother donated for the sake of others. My brother died last August 5th and he also was a donar. I probably had a strong influence on that. He also donated his corneas and his skin! I have had my transplant for 19 years so far...God is good!!
I am thinking of maybe trying those meds the doctor want me to take for the LDL, but first I am going to research if my liver will return to normal function if I stop the meds. (the meds stop normal cholesterol production). Also, it will have to really do a miraculous job for me to add another med to my list!!
Thanks for your reply, Rattlesnake!!

08-04-2012, 10:30 AM
Hi again LindaJ. The "Rattlesnake" moniker is actually my whl "animal kingdom" group name. My previous one was Rabid Pit Bull (I was "promoted" at 425 posts, I think). Yours is currently Sea Monkey, Steve is Super Moderator (he helps "moderate" the board), combined with King Kong. Notice how SaySusie (aka: Namaste) is Emporer of the Universe? Very fitting, though she doesn't let it go to her head... tic - Anyway, the "jmail" is my user name that I log-in with, but my real name is Rick. I'm no longer confused by all that "online" stuff anymore, but it took a while. Kind of reminds me of the old days (1970's) when I was driving all the time for work, and had a CB radio "What's yer handle ther good buddy?", that kind-a-thang.

The donor process can be kind of "de-humanizing", since they refer to "harvest" and "donor" and "cadaver" rather off-handedly when you loved one is on life-support, and they can seem to rude about it at times, but realistically, time IS of the essence when it comes to that, and you may as well call things what they are, and worry about pleasentries later, ya know? Once a family can get over that hump, it really is a beautiful thing, that so many people can be helped from one person's passing. My brother's corneas each went to two different people, I don't know how many people got bone fragments, two people with the lungs, the heart, the liver, skin... I don't remember what all, but it was over a dozen people got some form of help from my brother Mike, and the heart and liver were immediately life-saving for two people. Mom & Dad were getting cards from the "harvesters" for a good little while after his passing, letting them know each time someone had been helped. It's good stuff. That was over 20 years ago now, and I'll still tear up thinking about it all.

Definitely be careful with med or supplement changes, but be governed by doctors' advise, and if you get nervous about something, get a second opinion. It can be downright inconvenient, and if you're like me, you get impatitient waiting for anwers and results, and want to jump in "whole hog" and get something done. However, you don't want to end up being a "Mangy Mutt" in the real-world animal kingdom, with an adverse reaction, like I'm experiencing right now. It can be *VERY* difficult figuring out what causes some reactions. Just be careful and pay close attention to what your body tells you. I'm still learning how to pay attention, and to listen... tic |;^)

08-08-2012, 07:19 PM
I am curious to which medicines you have been taking? Did you also start with prednisone 'back in the day'. I say this because you are close in age to me. Have you had Lupus long? thankyou for you welcome. :)

08-09-2012, 06:33 AM
Thank-you, Rick, for your post. I appreciate you explaining some of this lingo on line. I am having difficulty navigating the site too. I am not that familiar with being part of a site. "Threads", "posts" confuse me. I don't really know where to go if I want to put out a question for everyone to read and respond to. I have tried a few. The only time I got a response is when I introduced myself! By the way, I loved your reference to the 'old days' !
I plan to contact the Transplant team this winter to have them send a little message to the family whose loved one donated his kidney to me. Don't you think it will make them feel good that his/her kidney is still going strong...will be 20 years. I know it would make me feel like part of my brother were still alive.
As far as the cholesterol medicine.....new problems have arised that make that decision pale in comparison. Unless you are familiar with Plaquenil, you would not understand. I have Lupus....you have Hashimoto's Thyroiditis. I am not familiar with that. What exactly did you mean that your digesting yourself?
Doesn't sound very good. I hope you are getting that under control!
I would like to ask you to be a 'friend' on this site. How do I do that?

08-09-2012, 08:06 AM
While the notes from the transplant people would bring the memory of my brother's death "front and center" all over again, I think it actually helps in the healing process, just from our perspective. Then you start to think of the other peoples' families that were helped, and it *really* brings you up.

A "post" is one person's response, or question, when you click on the submit ("Post Quick Reply") button. A "thread" is a series of posts, like a "thought thread", from everyone who responds to the "original poster" (you, in this particular thread). A "forum" is a set of similar "threads" grouped together, such as "New Members - Introduce Yourself" or "Lauri's Lounge". The term "forum" is sometimes used to designate a bunch of "forums" put together, and can also be known as a "board". There will be a test on all this Monday morning... tic |;^)

The easiest thing to do to do a new post, is to just use "Lauri's Lounge" initially. If you post something that might be deemed more appropriate for another section (forum), the moderators can move it easily enough (I think... lol - I'm not sure of the board's tools). You have to be in a forum, and use the "Post New Thread" button (near the top of the page, upper left) to start your own new "thread". If you "Reply To Thread" near the top or bottom of someone else's thread, oftentimes your question will just get "buried" in the thread, since most of the members are paying more attention to the original poster's query (naturally). Folks just don't "see" your question. Which is why you want to start your own thread to ask questions. The hard part for me is trying to come up with a "title" for the thread... |;^)

I am relatively familiar with plaquenil. I was on it for 3 weeks myself, and was just beginning to see signs of good improvement with mouth sores, joint swelling, etc., when I "reacted" to something, so I've now been off almost all of my meds for a week now, and some of the "usual suspects" in my medicine cabinet for almost 3 weeks, including the plaquenil. I'd been previously diagnosed with lupus (again) this year, rheumatoid arthritis (the first suspect indentified) in 1991, Hashimoto's thyroiditis, and string of other "secondary" things, such as sjogren's, renaud's, etc. over the years. The Hashimoto's could probably also be considered a secondary, since it's an autoimmune issue too. A person goes hypothyroid with it, and it's found with blood tests. A person shows up with certain antibodies in their blood for the diagnosis. Much easier to find than lupus, which is a process of elimination for some of us. As to "digesting myself", that also shows up in your blood, where there's certain enzymes in your blood from your digestion system. Something in me triggered an autoimmune response that attacked mostly my skin, but the liver is involved also, most probably just from being the blood's "filter", and can't keep up with all the stuff being thrown at it right now.

Wow! I sure "talk" alot, eh?... |;^) - (too much coffee)

08-09-2012, 03:33 PM
I am curious to which medicines you have been taking? Did you also start with prednisone 'back in the day'. I say this because you are close in age to me. Have you had Lupus long? thankyou for you welcome. :)

Hi Linda,

I was diagnosed a little over five years ago, when I was 51. My rheumy put me on Plaquenil first, took it for 8 month and it didn't help me at all. After that it was Mobic ( NSAIDS), Flexeril ( muscle relaxer) and steriod shot ( when I was in a flare), for about 3 years, nothing really helped, I was in alot of pain.
He finally started me on MTX, first the pills, then the shots and finally my pain was under control, UNTIL I had high liver enzymes and he took me off the MTX. Even after being off the MTX for weeks, my liver enzymes were still very high.
I had to have a liver boipsy and found out, that I have Autoimmune Hepatitis, with other words, the lupus is attacking the liver. Now I have been off most meds, except for Mobic, Flexeril and prednisone.
Hopefully my liver will recover and I can go back on the MTX.
I have also been diagnosed with RA and Sjogrens.