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Posted 2/19/2008 11:18 PM (GMT 0)

Hi all,

I joined today and have no idea if this is how I should introduce myself. I'm 42 and have been suffering with lupus for 15 years. acourse it took them 12 years to finally diagnose it and when they did the insurance company wouldnt let the doctor start any kind of treatment. It's a bad HMo in calif and there guidlines made it hard for the dr to do their job. Needless to say her and i were so upset. I changed companys, to a PPO so I could finally pick my own doctors and found a great one 2 weeks ago.

My worry is that I'm so sick that I'm scared it might be to late for the treatment/medications to work. He hasnt started them yet, he's waiting for a bone test to come back.  My flare ups are 24/7 as is the pain. I'm so glad I found this place, somewhere were others understand. Any advice, suggestions, support would be great. Most of the time I stay strong mentally and keep on thinking I'll be better once they find the right medications & dosage for me but times like this is when I wonder if it will work?? I'm worn out from hanging on all these years for help even though it was diagnosed a few years ago. 15 years is a long time with new problems popping up every year, 3 months down to 1 month as we all know. Help anyone????? Sorry this is so long

Posted 2/20/2008 1:00 AM (GMT 0)

Hi Cher, welcome to the group! I'm sorry you have had such a rough time of it. Lupus and other autoimmune is so hard to DX and than to have an insurance company like that is frustrating.

I would have to say that any time you start on meds is a good time. The reason you are in a flare 24/7 is because you are not taking meds for it. Most but not all of us take predisone and plaquenil alone with various other drugs. Those first two have helped me alot. All though I hate what the predisone does to my body. Plaquenil takes about 6 months to really get the full effect. I'm not sure why the doctor didn't start you on something right away but hopfully your bone scan will come back soon.

Most of us have gone through several doctors of all specialities before we got one that would work with us or listen to us. So hopfully this one will be a good one for you and get you on some meds soon to help with all of your symptoms.

Hang in there and don't worry about how much you wright. You can feel free to rant and rave and get mad all you want. We get it. We really do.

Oh my names Carol, 50 years old. I live in oklahoma now but I'm from arizona. I've only been here about 18 months. I'm ready for az and the warm weather again lol.

I'm sure others will be here soon to welcome you. Any questions just feel free. You're gonna love it here.

gentle hugs

carol

Posted 2/20/2008 2:30 AM (GMT 0)
Hi Cher, Welcome to the forum! There is some great advice in the topic "Lupus Resources" . . . link is in my signature . . .along with a couple other great links. I'm sorry it took so long for you to get some treatment . . . sheeeez!!! Okie is right the plaquenil is usually the first line of treatment, but it does take a few months to build in your body. Some are helped in much less time. But anti-inflamms can be very helpful, even the OTC types. Keep us posted and let us know what treatment plan your doc prescribes. Blessings!
Posted 2/20/2008 2:51 AM (GMT 0)
Thanks so much for writing...one thing I'm scared about is another doctor will not want to deal with this. even though he said he wanted to treat me progressivly what happens if he doesnt like many others??? I have workman comp doctors who cant do anything about it and are so upset that I havent been treated. I dont know how much longer I can do this...

I read your history and dang you have been through alot (hugs). How long did it take for you to get treated for lupus? for quite a few years I was scared of the medications side affects which is why I took 2 years off from doctors but now I dont care about them, I just want help and to know in around a year I'll be feeling better.

thanks again for replying and the support...I'm going to be here alot :)
Posted 2/20/2008 3:58 AM (GMT 0)
I'm sorry you have suffered for so long... that is just terrible.... I hope you get some relief soon....
Posted 2/20/2008 4:13 AM (GMT 0)
thanky you all:) Besides predisone what are the other medications usually given for lupus? I havent done much research on it due to i didnt want to get more scared of the side affects then I already am or was, now I dont care. I've heard over the past few years they have gotten better. I've been on oxycontin for years which is no longer helping the pain so i'm slowly getting off it. I still take my vicodin, naproxen klonopin for RLS, xanax and then eleavil to help me sleep. None of them help the lupus. Are ther any members here from calif?

Alwaysrosie..I also dont know why he's doing a bone density test, does anyone else have any idea?? thank god for my dog, our bond is what has helpt so much these past few years. She's also disabled, she has a collasped treachea and epilepsy so we were meant for each other :)

I've searched for a long time for a place like this and I'm so glad I found it:)
Posted 2/20/2008 1:13 PM (GMT 0)
Prednisone has a tendency to, after long use or a very high dosage, deplete the bones of calcium. Most doctors do a bone density before deciding to use prednisone, then do an annual bone density to see how things are going. They will likely tell you to take calcium -- depending on what the scan shows it'll be either OTC or prescript ion... Cheers,
Posted 2/20/2008 6:44 PM (GMT 0)
Hi..Thanks so much for explaining that to me. I had a feeling he wanted to check my bones to make sure my body could handle the medications. I've been on OTC medications for a long time and they dont help so I stopped taking them. I do take naproxen but it doesnt help much either. Because I've been ill for so long is why he wants to treat me progressivly before it damages any of my organs. I'm praying that in 2 weeks when I see him he will start the medications or atleast 1 of them. Atleast then I will get some of my hope back. Thanks again for letting me know about the test, now i know why he's waiting I'm so glad I joined this group and hopefully when things start changing for me I can help others like you all are helping me.
HUGS TO YOU ALL
CHERYL
Posted 2/20/2008 8:11 PM (GMT 0)
Hi Cher,

   Welcome to the forum. The others had some great advice for you. I just wanted to let you know your not alone in this. We all understand what your going through. I started having symptoms when I was 19 with no medicines and no dx till I was 32. I'm now 50 and doing quite well. I have been through some really rough patches with organ involvement over the years and on many different meds. There are several different meds for lupus such as, Plaqunil, Methotrexate, Cellcept, Imuran, Cytoxan(very toxic), and Arava.

   I have taken all of the above medicines over the years. Arava is the one I take now and have been for about 3 years. It seems to work the best for me with less side effects. We are all different though and what works well for one may not for another.

   I hope your doctor gets you on a good treatment plan for you soon and you will start to feel better. Please keep us udpated and take care. You will be in my thoughts and prayers.

                                                              Babs

Posted 2/21/2008 12:08 AM (GMT 0)
Hi Cheryl and welcome. I don't have anything to add to what the others have already told you, I just wanted to welcome you. I'm sorry about how long it has taken you to get diagnosed and I know overwhelming it can be when you first find out you have lupus. You have come to a great place for information and support. Take care and I'm glad you joined us.
Posted 2/21/2008 1:39 AM (GMT 0)
Cheryl...

I'm glad you are here and sorry you need to be.

I've been here since October and have so much love and respect for the others here.  Keep on asking questions.

I personally feel that knowledge is power.  The more you know, the more weapons you have to fight.

~Kim

Posted 2/23/2008 8:14 PM (GMT 0)
THANK YOU!! I COULDNT RESPOND SOONER DUE TO VISION TEST'S, DR' APPOINTMENTS AND HAD TO RE-open MY PART TIME ON-LINE BUSINESS TO KEEP SOME MONEY COMING IN. EACH TIME I THINK I CANT GET WORSE I DO, I NOW SEE IT EVERY WEEK. ONCE AGAIN I'M SO THANKFUL I FOUND THIS PLACE, I CAN SEE HOW CARING EVERYONE HERE IS JUST LIKE DAKOTA SAID:)

MOM46, IT SOUNDS LIKE YOU WENT THROUGH MANY YEARS LIKE ME WAITING TO GET HELP LIKE I'M SURE SO MANY OTHERS HERE HAVE.

I HAD SOME VISION TEST DONE AND THEY ARE SENDING ME IN FOR A MRI ON MY EYE NERVES, IT SHOULD BE A TOTAL BRAIN SCAN. THEN THEY WANT TO ADJUST MY GLASS'S AGAIN AND PUT STINTS IN THEM TO HELP THE PHERIAL VISION. I'M NOT GOING TO LET THEM CHANGE MY GLASS'S SINCE I'VE ONLY HAD THEM FOR 4-5 MONTHS NOW. WHY PAY ALL THAT MONEY IF THEY DONT KNOW THE CAUSE? THEY WILL JUST GET WORSE. SO I SEE MY GREAT MAIN M.D ON THE 6TH AND LET HIM KNOW. WE ALL KNOW VISION PROBLEMS IS PART OF THE LUPUS. MY EYES WERE FINE 8 MONTHS AGO SO FOR TO GET THIS BAD IN A SHORT PERIOD OF TIME IT'S CLEAR IT NOT A "REGULAR" EYESITE ISSUE. THE APPOINTMENT ON THE 6TH IS WHEN HE'S GOING TO START TREATING ME AS LONG AS MY BONES DENSISTY IS OK. AT THE SAME TIME I'M WORRIED CAUSE HOW MANY DR'S HAVE ALL OF US GONE TO WHO SEEMED GREAT IN THE BEGINNING AND THEN ENED UP NOT CARING. I CANT GO THROUGH THAT AGAIN, I'M TOO TIRED TO KEEP FIGHTING. I KNOW THOUGH YOU ALL WONT LET ME GIVE UP :) AND IF I KEEP THINKING POSITIVE THIS DR IS "THE ONE" TO FINALLY HELP ME. HIPPIMOM, JUST HAVING YOU WRITE HELPS:) OH, HOW DO I ADD MY DIAGNOSIS ON THE BOTTOM OF MY PAGE??
HUGS
CHERYL
Posted 2/24/2008 2:27 AM (GMT 0)
Hi Cheryl, You can add information (your signature) to the bottom of your post by clicking 'Control Panel' -- it's in the second blue bar from the top of the page, on the left hand side of the screen. Then select 'Edit Profile' -- at the bottom of the page you'll see a box marked 'Signature' -- that is where you type in your information. Also, I wanted to remind you that something in all CAPS is considered shouting and very bad manners when online, and it's actually one of the Forum Rules -- Rule 14. No SHOUTING. Remember, using ALL CAPITAL LETTERS in posts is considered yelling and rude, plus it is difficult to read. Other rules can be found by clicking 'Forum Rules' -- it's the first item in the vertical yellow column to the right of the screen. It's always a good reminder to re-read the rules every few months -- sometimes with all the 'lupus fog' they are easy to forget!!! Hope you find an eye solution soon, Cheers,
Posted 2/24/2008 2:39 AM (GMT 0)
Thanks for letting me know how to add my signature:)

Sorry about the all caps, thats how I usually type due to my carpel tunnel and in bold so it's easier to read, all my friends and buyers know but I forget when I am typing elsewhere. So thank you for reminding me, I'll do my best to remember, I was doing o.k. my first few post's, lol.

Have you had vision problems with your illness or anyone else? I know it's common in lupus but dont know to what degree and if it can be reversed? I'm now feeling really comfortable here and will start checking out the rest of the site:)

Thanks Lynnwood for reminding me about the caps:)
Cheryl
Posted 2/24/2008 3:02 AM (GMT 0)
My eyes have been changing more rapidly than I would like. I have Sjogren's Syndrome (also called Sicca Syndrome) which often accompanies Lupus and which very often initially presents as eye irritation. My eyes were itchy and my sight sometimes blurry -- I learned that this was a 'dry eye' symptom of Sjogren's, eye dr did a test, and sure enough, that was Sjogrens! Mine is minor enough to be controlled with OTC eye lubricants, there are others here who have prescript ions meds that help. When my Lupus is in a bit of a flare, and I have inflammation, sometimes that will affect my eyesight. It is a temporary effect - my dr checked my eyes once a month for 3 months just to verify that my sight was fluctuating, both better and worse. This is low grade inflammation -- only noticeable by a very slight fever. For the most part, I imagine my eyes changing are a simple result of the aging process (49) -- anyway, that's the theory I go on. Things can be less clear in the morning before the eye lubricant, in the evening if I've had a long day, or do too much computer work, reading, or am in bright light a lot...part of the photosensitive component of lupus... Isn't life grand!
Posted 2/24/2008 5:01 AM (GMT 0)

Hi:) Your information helped to much, thanks lynnwood!! I told my eye dr that I dont want my glasses changed cause i knew that wouldnt fix the problem, i just got glass's 6 months ago after having good eyesite my whole life. Atleast he's doing a MRI on the eye nerves in a few weeks first. 3 years ago i was having my major glands tested by an encologist and he ruled out one (thyroid) and the next 1-2 were in the brain. I changed insurance companys and never picked up were we left off due to the lupus getting worse. Your eye problems sound just like mine. I've been using OTC eye lub's for many years and now to need to get a prescription one. to be honest I'm kinda scared to find out what is causing it...like you said it life is grand, thank god for my baby dog kenna:).

Your message really helped and i'm going to have my lupus dr check this out also. he's my new doctor and is really good (so far, I pray it stays that way:) So we are dealing with getting the lupus under control, then the migraines & nerve damage in ankles. Now though I'm going to add the eyes to the top of the list after the lupus.

Sorry for any spelling errors but i only can type with 2 fingers and it hurts my eyes to much to re-check what i wrote.

thanks again:)

cheryl

Posted 2/24/2008 5:07 AM (GMT 0)
Hi Cheryl!

 

I wanted to extend my welcome to you too!  You have a very positive attitude, and that bodes very well for you!  Just keep on top of those doctors and learn as much as you can about lupus and basically how the body as a whole, works.  If you can talk like a doctor, they'll have more respect for you.  That's what I've found anyway!  Plus, knowledge is power with this disease.  The more you know, the healthier you'll be.

 

I'm glad you found us too! 

 

Ginny

Posted 2/25/2008 2:59 AM (GMT 0)
Thanks Ginny:) I try and stay positive and do a good job of it most of the time. Today is one of those hard ones. Hearing about that great gal here that past away reminded me of a friend who pasted 10 years ago from this disease. Her's wasnt caught in time and had affected her kidneys by the time she was started on treatment. Like most of us here I've been ill for more years then I was healthy. With all these new and scary symptoms like my eyesite It just makes me wonder...how long do i have or will the treatment give me many happy years here. Like you said, i know if i keep on staying on top of my doctors I will get what I need. I'm counting the days (12 left) until the test's are done (another MRI, Bone density) and should be able to start treatment with my new Dr. who seems great and wants to treat me progessivly. If he doesnt I will be so upset but will get back up, find a specialist & keep on going:) I'm determined that this year is the last one that I'm going to go through without having my lupus be treated correctly. I know the disease well except for how long do we have?? how long can the treatment give us? Thats whats been bothering me today because each week is getting worse...

Thanks for writing, you were also so young when you got ill. How much of your "life" did you get back after they found the correct treatment for you??
Posted 2/25/2008 5:15 AM (GMT 0)
Your fears are so valid Cher.  I have often felt that very same way.  All the "what if's".  I think that over this past 8 years of having my diagnosis, the "what if's" have lessened quite a bit.  I was very sick when I got the diagnosis, and I think, by the grace of God, the combination of drugs that my rheumatologist picked for me to try, were the best ones for me.  Prednisone and Imuran.  I haven't needed to try anything else.  I know there are a quite a few members here who have had to stop one course of medication, and try another one.  But you know what?  They all got through it.  And the new meds work for them! 

 

Most of the medications prescribed for us will kick in and start to work within about 6 weeks.  Improvements or lack of improvements show up quickly, and can therefore make it possible to switch the medication or stay on it.  That is a very positive thing for us to remember... That the meds can be switched if they don't seem to work.

 

Hmmm, that is a good question you asked!  How much "life" did I get back after I started treatment..... Well, I gained a lot of my life back, but I also lost a lot.  I reacted very quickly to the prednisone and Imuran in the beginning.  After about 8 months, I really noticed that I felt so much better.  What set me back two years after my diagnosis, was a stroke.  I hadn't been tested for a certain protein that lupus creates in some people.  It's called APS, or the Antiphospholipid syndrome.  The protein makes my blood thick and sticky.  That's what caused my stroke.  I was 28.  I will be on blood thinners the rest of my life. What is miraculous is that shortly after my stroke, I went into remission!  I was in remission for 4 full years.  It was amazing.  I continued to take my medications, but all of my symptoms were gone.  I really got my life back in gear during those 4 years.  The remission ended in the summer of 2007.  I had a life threatening allergy to a new seizure medication I was given. (the stroke left me with small seizures).  So when that allergic reaction happened, my body went haywire.  It was a disaster.  I haven't been the same since last June.  I'm not bad, just not quite 100% anymore.  Lots of little issues that pop up.

 

So, I do feel like I've gained my life back to a degree.  But the lupus is always right there, lingering around, waiting to stir up some trouble. I never feel free from it.  To keep myself from going crazy thinking about lupus and all the crap it creates, I pour myself into my photography, family, friends, faith. I think I'd be a basket case if I didn't have them in my life.  Do you ever feel like you are going to lose your mind with all this?  I do. 

 

Wow, this is a long one. Sorry about that!  I'm glad you are so comfortable being candid in your questions.  Gives everyone more insight into the deeper part of how this disease affects us day to day.  Thanks for being here!

Blessings,

Ginny 

 

Posted 2/28/2008 3:53 AM (GMT 0)
Hi,

Thanks for your responce, information and your own experience. I am a pretty direct open person, my life is a open book when anyone ask's me something. My main worry at the moment is what happens if this good doctor I recently found isnt the same as he was the first visit? As we all know here, we go through many doctors until we find one that will finally help. I'm counting the days until I see him on the 6th. Once I see how that goes and see he still wants to treat me progressivly then i'll feel better emotionally. I'm not sure if I could handle another set back, those are just as hard as dealing with this awful disease.

You have been through so much!! Hearing your out come not only helped me but it must help so many others:) when you mentioned the thick and sticky blood thats how my last 2 blood samples were like. This last one I couldnt beleive how thick it was in the test tubes. How often are your seizures? how often are your lupus "flare ups" now?

Yes, at times I do feel like I'm going crazy, thank god for my therapist. Thats why I allow myself to cry for 15-20 minutes each day if needed, just to get it out. Once I do I usually feel emotionally stronger. I've also wondered how close I'm am to actually have a nervouse breakdown. Some days i feel like I'm hanging on by a thread. I hang in there though and then my strengh to fight this comes back. I'm a very spiritual person and have really been doing alot of praying.. Yesterday was a bad day, I couldnt even get off the couch. The only time I did is when i made myself because my dog kenna had to do her business. Thank god for pets, she's my  companion & has my heart:) she also has health problems so we were meant for each other yeah

I still wonder how many years this disease even treated shortens our life span... confused

I had my bone density test yesterday and have my MRI for my optic nerves pitatory(sp?) gland done on the 5th. Those kind of things dont worry me except for the vision problems and hoping they will be reversed once on the correct medications.

Thanks again for writing Ginny, it gives me hope and the fight we need to get the treatment we need.

Hugs,

Cheryl

 

Posted 2/28/2008 4:31 PM (GMT 0)
Hi Cher:

I just wanted to welcome you to the forum. I can relate to all that you've said about the "what ifs". I've had lupus for 19 years and have been on prednisone for the past 7 years. I think because my doctors allowed me to go untreated for 12 years made my condition so much worse to deal with. I've tried all the medications offered to treat lupus except for 3 of them. I was on oral cytoxan for 9 months and then I had 3 months worth of IV infusions of this drug. A year later I ended up with MDS it's a blood cancer like leukemia. Matter fact 30-45% of all MDS patients MDS turns into full blown leukemia. Because of my age I'm going to need a bone marrow transplant to continue to live.

Loosing Tash last week really hit home for me. I'm so sick it's easy to imagine that it could have been me as easily as it was Tash. I try to keep a positive attitude but it's hard. I'm sitting around waiting to get sicker and become sick enough to have my doctors agree to do my transplant. I just wanted to say please make sure your doctor gives you some type of medication for your lupus. You may not need all the heavy duty drugs maybe only one drug will be needed. Try to keep your chin up and know that we're all here for you. Wishing you the best, and looking forward to hearing from you soon.

Take care,
Barbara
Posted 2/28/2008 11:47 PM (GMT 0)
I'm so sorry to hear all that your going through:( Like you I've been ill for 15+ years and since it advance it might take longer to treat. What caused the MDS? was that due to any of the lupus medications or lupus itself? It's weird you brought that up, over the years I've had 3 test that should a "trace" amount of leukemia in my blood work ups unless that test means something else. I cant imagine how scared you must be...it's hard enough with the lupus but dang, with what your going through. All of this is so scary, we never know whats going to happen next to our bodies. I never thought my eyesite would get affected as bad as it has. Then all the other kinds of diseases we can get...How do you stay sane?

Thanks so much for writing and sharing with me what your going through...everyone here has been so kind. When I hear situations like yours I wish there was something I could do...
Posted 2/29/2008 5:09 AM (GMT 0)
Welcome Cher! Sorry for all you are going through. You have come to a great place for support and frienship from people who know what you're going through. God Bless you, Judy



Are you from the south?
Posted 3/2/2008 2:37 AM (GMT 0)
((((((((( Cher ))))))))))) I'm sorry you are having such a hard time. Its only a few more days until your appointment . . . I sure hope you get some relief soon. I'm glad the members here were so helpful to you (I've been away for several days) sorry I wasn't able to post. It sure helps to be able to come here and get support from others who know what you are going thru. Keep us posted. Blessings!
Posted 9/29/2008 7:03 PM (GMT 0)
Hi everyone,

Once again it's been awhile since I've been here. I run a at home business which takes every ounce of energy to keep it going. My eyesite is being affeted badly by my lupus & other illness's and I'm getting so scared I'll have to shut down the one thing I can still do.

I'm finally being treated by a well known lupus specialist after 20 years of suffering and getting so bad I cant leave my home. I was first put on planquinel (sp?) and then Prednisone (only 10 mg) which was the first time I saw a medication help a little. It's a small dose and hopes he raises it cause I know in my gut it can help much more. The extra energy it gave me was great, I was able to go out to lunch with friends. It also helped my eye pain, not the vision but the pain. Four weeks ago he added methotrexate 2.5 grams 4 times every monday and I feel like I did before I was on the Prednisone. I know it takes a month or so to help but the side affects are worse then the prednisones which was none except for a chubby jin. I felt hope for the first time until he said he wanted to take me off it in 2 months due to the side affects it can cause to the body. I'd rather feel good now then worry about long term side affects. Ive lost too many years of life as it is like all of us here have.

I was hoping to get some imput on the Methotrexate and if it helped or didnt help others here. Thinking I have to be on it for another month isnt fun but if it eventually works then it's worth it. I felt the benefits from the prednisone fast but this one all I feel is sick. The reason he put me on it cause he wants it to replace the prednisone next month. Any experience with this, like side affects would be great and/or other medications for lupus that have worked well for others here.

also during my last visit his assisant brought up fusions of chemo and another medication i forgot the name of. It's a new treatment and the patients I've talked to there say it's really helped them. I guess your really ill for the 4 days after it but then feel much better for a month or so. Does anyone have that treatment here?

Thank you all in advance:) I really am going to try and come back here more. Because of my eyesite getting so bad it's hard for me to read but when needed I use a magnatizing glass. also, sorry for any spelling errors, it hurts my eyes to go back and proof read.

Hugs to all of you:)

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