View Full Version : Introduction from Lanette
11-28-2008, 06:24 PM
Hi Everyone. I'm new here...guess that would be why I'm on the introduce yourself page. :)
5 boys ages 10-19
Live in SE Florida, recently relocated from Michigan.
Flight Attendant (not any longer due to Lupus and other problems)
I began getting sick, well sick that I noticed something really not right with me, the end of September. I had a terrible viral flu, gastro upset, although nobody else in my home came down with it. The following week, I broke out in a horrific rash, head-to-toe. I really cannot describe to you how terrible this rash was! On top of that I had aches of all kinds. My body felt ran over by a semi, or a fleet of them. I continued working as a flight attendant, but every flight I was sick, my layovers spent in bed praying to feel better by my next flight. October 20th, I decided to see a doctor. At this point I was not able to swallow much of anything, walking, was excruciating, I was scratching insanely, nauseous, bouts of diarrhea, coughing, unimaginable fatigue...I was a hot-mess to say the least, it's like my entire body went crazy.
I went to the doctor daily until November 3rd. I left my GP to go see an internist who referred me to a rheumatologist. I left several gallons of blood with every doctor I saw anywhere from 13-22 vials per visit! yet they couldn't come up with what was wrong with me. I had tests upon tests. Two weeks ago my rheumatologist handed me the test results; Lupus, APS, Mixed Connective Tissue Disease, Lupus Anticoagulant Syndrome and most likely MS. I see a neurologist for the MS in a couple weeks. I had the MRI on the 26th. I see my rheumotologist on 12/1 for the results.
At some point, not sure which day it was, I lost vision in my left eye for about 30 minutes. Of course this terrified me! I guess one of the 'overlap diseases' causes bloodclots, and it seems I have one behind my left eye. I'm on blood-thinners to break it up and careful monitoring.
So, I'm on Prednisone, as you already know I'm sure, having been there, done that. I'm very concerned about the side effects of Prednisone. I don't want a humpy back, a pot-belly, facial hair and weight gain! This is every womans nightmare drug! Does anyone know how to combat the side-effects of Prednisone? Is there an alternative? I've been on Prednisone for several days and my symptoms are raging-worse when it's wearing off, seems worse than before I began the Prednisone. I don't want a higher dosage!! I want a different drug that isn't going to turn me into a ghoul!
Vain? More than I ever knew.
The irony of this is, I was in the process of donating a kidney for my best friend. She has Lupus. What sort of twisted joke is that? I was going through the donation process when I first became sick, so of course had to stop. Thankfully, she has found a donor, and is scheduled for transplant surgery 1/5.
My doctor told me I cannot fly again, due to the clotting problems. Easy for her to say, I'm a Flight Attendant...or was. I just can't wrap my brain around all this new lifestyle changes. Earning an income? Hah! In this economy. This royally stinks!
I know this is rambling and long. I thank-you if you've read it this far. If anyone has any insight, advice on drug alternatives, I'd love to hear them. When does this pain go away? When can I begin to feel better? I need to start walking and living life again, not hobbling around like a 99yr old woman. My joints swell almost as soon as I stand up, so I'm sitting on my tuckus all day long, wasting space it seems.
Thanks for listening.
11-28-2008, 08:38 PM
Welcome to the site. My name is Kathy. I have SLE, Lupus and several other auto-immune disorders. I am wondering why they have not put you on Plaquenil yet. I guess maybe they are waiting until you see the Rheumatologist before they decide just what to do for you. Keep in mind that if htey put you on Plaquenil that it can take up to 6 months to get the full benefit of the medication. Please keep us posted on what is happening ok. I hope that you do not have MS.
There are a lot of wonderful folks that come in here with lots of good information.
11-29-2008, 04:46 AM
And ramblers are welcome :lol:
We all have our moments and need to ramble from time to time. Your's was a short ramble, you have to practice that one a bit :D
Has your doctor mentioned if they plan to keep you on the Prednisone?
Of why they prefer to have you on the Prednisone.
I think I would be tempted to ask the questions with the amount of clotting you having. I do not know alot about that drug. I've never been on it.
There are other members here who have and or are on Prednisone. They will be able to give you more feed back.
I'm on arthrotec75 and plaquenil. No drug is completely with out nasty side effect. I guess it is really a matter of finding the one you can live with.
Don't be afraid to talk to you doctor about things that are bothering you about your perscription treatment. There may be other options, or at least make them explain to you why they are choosing a treatment. You have a say in it too.
Glad you found us :)
11-29-2008, 07:55 AM
thanks for the welcome. I feel I know you two already as I've read numerous posts by you! :)
My doctor said she was putting me on Prednisone to put the Lupus in remission. I see her again on Monday, so I'm definitely going to ask about the plaquenil. I'm sure there isn't a generic alternative? I think I'll be losing my health insurance in a month and not sure how I'm going to afford these drugs.
Do people take Plaquenil along with Prednisone? Does Plaquenil put Lupus in remission?
11-29-2008, 09:03 AM
I wish I could guarantee that Plaquenil would put you in permanent remission, but there is no way I can. Nobody can predict that. The plaquenil usually makes the Lupus flares less severe and helps keep the Lupus from damaging your organs. Lupus is a chronic disease with no known cure as of yet, maybe one day there will be a cure. Lupus tends to run in cycles or is cyclic big time between flares and remissions. It is an awful rollercoaster ride. You will learn in time what tends to trigger a flare. The sun if you are sun sensitive will do it, and so will Ultraviolet rays. A simple cold can do it. The biggest thing that I found that triggers a flare is STRESS big time. Boy with this illness stress is very hard to avoid. I have had this rotten nightmare of a disease for about 44 years. I still get baffled by it and everything it has done to me in the past. I hope that the Plaquenil helps you a lot. I know in my case it has helped a lot. Just remember though it will not keep you from flaring, no drug will, but it will make the flares easier to deal with. I hope that this helps some.
Please keep posting as we all care for and about you.
11-29-2008, 09:09 AM
I forgot to tell you that Plaquenil's generic name is Hydroxychloroquine.
Some people do take both of Prednisone and Plaquenil, but they tend to try to get you off of the Prednisone once the Plaquenil kicks in real good. Plaquenil takes about 5 months to get in your system real good. Plaquenil does not have as bad of side affects as Prednisone and is better for long term use. Plaquenil is one of the top of the line medications for Lupus. I hope that this helps.
11-29-2008, 09:24 AM
Thanks Kathy! You're a wealth of information. I really want to try Plaquenil. Anything has to be better than Prednisone!
11-29-2008, 09:34 AM
Ok, I'm somewhat of a ditz brain.
My doctor gave me some info to look over between last weeks appt and the first.
On this, was three additional medications that she wanted me to research and come to her with questions. She said these were medications she would be adding on 12/1.
They are Imuran, Plaquenil and/or methotrexate? something like that. I can't read her writing very well.
I was so overwhelmed by all the information, I completely forgot this note until this morning. She did say the Prednisone would be temporary. So I'm assuming that it will be used just until the Plaquenil kicks in.
11-29-2008, 10:26 AM
I am glad that your doctor gave you a list of the different medications to research online. I do think that she will be getting you off of the Prednisone eventually. My doctor got me off of it pretty fast too once the Plaquenil got kicked in real good. I am also on Imuran as you can read from my signature. These combinations of medication seem to do ok for me. It sounds like you have a really good doctor that is going to do right by you and I am happy for that. Please keep us posted as to what all the medications are that she puts you on ok.
11-29-2008, 01:57 PM
Sound like you're doctor is going to be good to work with on this. I've been kinda quiet lately so I missed this post.
Glad you are getting lots of good information. :)
11-30-2008, 02:42 PM
I am Saysusie, the Moderator/Administrator of this site. I see that you have been well taken care of by some of our members (you will find the people here to be phenomenal and very informative). I noticed that your doctor wanted you to research Imuran, Plaquenil, and Methotrexate. As Kathy and SITC mentioned, it appears that she is wanting to reduce your dosage of Prednisone.
The drugs that you've mentioned are pretty much the standard treatment for newly diagnosed Lupus.
IMURAN: This is the trade name for azathioprine. It is an immunosuppressive medication (lupus is a disease with over-active immune system - the immune system attacks itself). Immunosuppressive medications suppress the over-active immune system. If it works successfully, you should be able to reduce or eliminate the need for Prednisone. Please bear in mind that Prednisone should not be stopped with the addition of Imuran to your treatment. Your Prednisone dose should remain the same until there is improvement in your symptoms after beginning the Imuran. Then the prednisone MUST be tapered slowly, at one to five milligrams per week in order to avoid problems.
If Imuran is working, you will begin to notice gradual improvement after about 3 to 12 months. This improvement will most likely also be measured clinically, by the decrease in the number or severity of your symptoms, and for the need for less prednisone. Imuran (Azathioprine) sometimes causes nausea or vomiting, so you should take it after meals or at bedtime.
METHOTREXATE (Rheumatrex): Some people do not respond well to the Prednisone and Plaquenil combination. In that case, Methotrexate or Imuran are often used with the Plaquenil or sometimes alone. Methotrexate is another immunosuppressant drug. The immunosuppressive drugs, Methotrexate (Rheumatrex) or azathioprine (Imuran) are used as steroid-sparing drugs. If a lupus patient is using prednisone, Medrol, or solu-medrol to help control their lupus, and they begin to have complications, their doctor's usually start them on Methotrexate.
PLAQUENIL: This is an anti-malarial/anti-rheumatic drug. These drugs are most effective in treating skin and joint symptoms that may occur in SLE. They have been shown to improve: muscle and joint pain; inflammation of the lining of the heart (pericarditis); inflammation of the lining of the lung (pleuritis); and other symptoms of lupus, such as fatigue and fever.
It should be noted that Plaquenil IS NOT effective on more serious symptoms of Lupus and used alone, does not guarantee remission. Plaquenil is almost always used in conjunction with other medications and it is the combination of medications that can sometimes lead to remission. Remission IS NOT a guarantee with ANY combination of medications. The point of treatment is to avoid flare-ups and to control and/or lessen symptoms. The one area that Plaquenil is effective in remission is in skin symptoms of Lupus and/or oral ulcers.
Anti-malarials appear to interfere with dysfunctioning immune cellular functions and on the inflammatory process.
A major potential side effect of anti-malarial use is the possible damage to the retina at the back of the eye. It is important to note that retinal damage due to the use of anti-malarials is dose-related, and the low doses currently used in the treatment of lupus are rarely associated with this condition. Most cases of eye disease occur in people receiving more than 400 mg of Plaquenil or more than 250 mg of Aralen daily. Atabrine is not known to cause retinal damage.
I hope that this information has been helpful to you. Let us know if you need anything further and again....welcome!
Peace and Blessings
11-30-2008, 03:00 PM
Thanks for the welcome and the abundance of info! I have an appt tomorrow with my specialist. I'm going to discuss these drugs, pros and cons, with her tomorrow.
12-01-2008, 07:42 PM
I hope you got all the answers you needed today. I am thinking about you. Prednisone can be helpful to help with the pain initially, but you do not want to be on it for a long time. The first two times I took it, I felt wonderful. They put me on a short burst dose pack and within a week of going off, the symptoms were back. This last time, I became very mean and even somewhat violent on it. I don't know that I want to go back on it ever again. The temporary fix is not worth it. (I actually threw a lamp at my husband...and he really did nothing wrong)
I have to find my original lab results to see what my results were because the docs I have seem have me wondering if I even have Lupus. I know my ANA was high and speckled (can't remember the exact level), but everyone is telling me everything is within normal limits now and I should be feeling fine. I feel worse than I ever have.
I understand about the 99year old woman thing. When I go from a sitting to standing position, it takes a minute for my brain to tell my legs to move and then when they finally decide to move, they feel like they are going to shatter under my weight.
Keep in touch and let us know what your results showed.
12-01-2008, 08:16 PM
Hi welcome to the site. My name is Sandra im 25 with two children and i was diagnosed in January of this year. Hope all is well and once again WELCOME
12-01-2008, 08:58 PM
Hi all. The results today showed no MS! Victory for me! However, (seems there is always a however or a but...)
The MRI of my spine showed spondylitis. The MRI of my brain was 'abnormal'. I was already scheduled to see a neuro on the 18th, so now I have two things to see the neuro about.
I am to begin Plaquenil after my eye doctor appt and lab work comes back this week. My rheumy thought I would be starting the Plaquenil on Friday or Monday.
I was also told I should be able to start working mid-February, but not as a Flight Attendant (my current profession). She said 'no, never again' on that career path.
Thanks for thinking of me lovelies. I'm hanging in there. Thanks for all your insight.
12-02-2008, 05:25 PM
Congrats on the all clear for MS.
Good luck with your neuro appointment. Keep us posted on how things are going. :)
12-02-2008, 05:30 PM
I am very glad to hear that you do not have MS. That is really good news for sure.
12-02-2008, 09:04 PM
Hello Oopsy :lol:
I always love to hear good news and this is, indeed, good news. I am happy for you :lol:
Peace and Blessings