I was diagnosed with lupus 6 years ago. I keep it under control with medicine. My doctor is never too excited about trying new medications on me. In fact, most Rhem. doctors I have visited don't really pay much attention to anything I have to say to them. They just look at me and say, well, there are no new medicines on the market.. I have had no luck in finding a good doctor to take care of my lupus. Also, does anyone out there have any trouble trying to lose weight. My thyroid tests always come back normal but, I am having a rough time taking off any pounds. Can someone relate to this and, if so, please write to me. And, if anyone can suggest a good doctor in the Sarasota area of Florida , please let me know.. thank you so much..
Hello Hadley, Yes it seems like we all are having weight problems. Mine started with Prednisone! They havn't come up with anything to help that much for us who have lupus! I feel like they aren't doing enough to find answers!I had very good doctors in Texas and Florida, but they say all that can be done is to find the right med's to help us function. I have been watching alot of discovery health and I never hear anything about Lupus. All the commercials on Tv talk about med's to help with every other illness known to man except Lupus. Makes me wonder why that is?
I feel for you! Yes, getting the weight off is so hard! I have gained 70 pounds after being on high dose steroids for going on two years.
AS for good doctors, and I know this seems lame, but you just have to keep trying. It can take a while to find a good one.
Here are some things I suggest:
1) Contact other Lupus Patients and talk to them about doctors.
2) Check the LFA's website (www.lupus.org). They can give you several docors in your area.
3) If there is a local chapter or branch of the LFA, contact them! They will know tons about being treated for Lupus in your area!
I knew it!!! I had lost 54 pounds on my own..Then I was diagnosed with mctd and given all these meds and boom!! It's back!!! The doc said it couldn't be the meds..No indication that it was a side effect in any med besides prednesone. Thanks for letting me know that I am not crazy.
I have lupus and been on staggered dose of predisone since 1996. Like others I gained over 60 lbs. This year I decided to take control of my weight problem. I joined weight watchers. Since march I have lost 26lbs and still trying. It's slow and sometimes only less than a pound lost in a week but it works! I had a flare up 3 weeks ago which took me to the hospital and pumped full of iv steriods and then back on high doses of predisone. I stayed on my weight watcher program and still lost. Good luck!
Thankyou everyone for all your relpies to me. I hope I keep hearing from all of you. My weight problem is not coming from steroids however. I refuse to take them, due to the fact that I gained 100 pounds from depo metro, a couple of years back. ... I just take plaquinil. I've been on every diet know to man. Last year I took off 60lbs and that was it. I have been struggling ever since. I diet faithfully, and lose nothing. My doctor tested my thyroid profile and it comes back normal. I am just totally discusted and perplexed. I guess the next step will be to go to a thyroid specialist. I know that lupus can affect the thyroid as well as other organs. I hope someone can shed some light on this for me... My lupus is under control right now, thank the lord. Doctor says I have a mild case. For now anyways. Well, thanks again all of you guys and, hope to hear from you. Good luck to all and, may god bless!
I am this close to being diagnosed with lupus at the lupus clinic. I have the same problem no prednisone yet but gained 30 pds - I ve finally lost 5 which gives us hope for the other 25. Try juicing, smoothies instead of breakfast or lunch homemade only then a healthy dinner. small chicken fish overloaded with vegs. lots of water, no gluten, pasta , meat, or milk. you will lose it feels like im eating nothing - but it works - i just decided to try something natural on my own. you burn fat when you sleep so no sugar or fat. sleep alot and swim and walk it took 2.5 wks to lose 5 lbs but before, i tried to lose for months nothing even gained. its my little secret so sharing it with u. be patient and hope it works. NO caffine!!!!! email me if you have any more questions.
I have had the same problem. Since my diagnoses 2 years ago and starting plaquinel, I have continually been gaining weight. I too have low thyroid and been testing within the normal limit. It frustrates me so, because i eat healthy and am very calorie conscious. Very frustating!!
I believe you said that you have already lost 60 pounds...Correct? Almost all people losing weight find themselves in periods of time when they cannot lose weight (called plateaus (sp?))...You will find that sticking with it and exercising more will help things.
To lady brannen.......... Yes, I lost 60lbs. , but have only maintained my weight for the past year. I had surgery on my knee recently and have not been able to exercise. Before my knee operation I belonged to an exercise place called curves. I continued to maintain and not really diet. Now, its time to diet again. This is when I discovered that the weight won't come off. I have been strickly dieting now for 2 mo. And have lost nothing. Lupus can get into organs. It can get into the thyroid. Its already been in my kidneys for 2 years but its not severe enough for medication just yet. I just keep my eye on it! I know the next step will be a thyroid doctor. I will see when I go back to my rhem. In a few weeks. Its all so frustrating. I am totally discusted. People see me as the person who is always dieting and never gets any thinner. I know they probably think I just say I diet. Sometimes I think my doctor thinks that too. He is also getting on my nerves. I have found another doctor who has a good reputation for really caring and actually helping people like us so, after my next visit to my own doctor and, if he is still not doing right by me then, I will go to the new doctor. These doctors see us with a disease that there is no cure for. Its a mystery to them so, they really don't show proper interest. All they do is perscribe medicines that make most of us have bad side effects. If we question them well, they say its either this or death., i'm mean , come on. What kind of answers are those I ask you. Well, take care and I will keep you posted.. Thanks again for caring...
Yes, you are correct...It can get into the other organs. Have you talked to your doctor about it possibly being in your digestive system? I know i, just recently, have started looking into that myself.
As for your doctor, I am thrilled that you have found another doctor. It sounds like you needed to do that.
Do you have any research colleges or hospitals in your area? I have found that at those type of facilities; you will find people who do care about this disease. Just because this disease has no cure, is no reason for you to get the "who cares" attititude. There are lots of lupus researchers with both public and private monies.
Yes, please do keep me informed. I wish you well!
I'm not sure where your town is located? I'm in st mary's, ga. Near jax. I lived in jax. Beach for 14yrs. It would be nice to find somebody close to home to talk to. Not that i'm giving up this web site. It's great knowing there is a-lupusland out there to share our ups and downs with without feeling like a hypercondreact.
I have non-lupus question. How do I add those emotions in? They are so...Cute! Till next time,
I live in bradenton, florida. This is near tampa, st. Petersburg. Why are you giving up this web site? There are lots a good people out here who can help you with your lupus questions, and I know they are all willing to be your friends too! .... To use the emoticons, just click on the one of your choice. It won't appear right in front of you, but it will show up when your message is sent. If I can be of any help to you, write to me anytime., ok? We lupus people do get treated pretty badly most of the time. Most people and the doctors ignore us. The doctors would rather treat people who have diseases where they can make lots a money. I firmly believe that they actually try to make people stay sick. I mean come on. Without us ill patients, they would have no jobs. Thats why its so hard to find a caring doctor these days. One who actually wants to help us. I live in pain daily. Now, I had to give up one of my anti-inflamm's pills cause, I can't afford them anymore. I pay over 400. Dollars a month on medicines. I have to give up some of them. They are poisen anyways. , most of them are I believe. Just another farce to make the phar. Richer then they already are! I just recently found out that the prices on medicines are controlled by the pharmacies., not the government. I need to research this some more to make certain that what I learned is correct. Do you have a good doctor? Mine just tells me, move your head from side to side, lift up your arms over your head, listens to my heart and then writes out the rx's and says see ya in 3 months... When I tell him about how I am feeling, he just stares at me like i'm nuts. He is clueless. Then, charges me 100 dollars. Isn't that nice?? So, I am currrently searching for a new rhem. Doctor. I was referred to a good one recently, but he is very far away. Too far for me to travel. ....... Well I wish you luck and don't give up. Keep me posted. I am here for anyone who needs to talk. Bye for now, and never give up hope...
Give up this web site,never sorry if I gave you the wrong impression. What I meant was I know someone in tex. Who has ra. And someone in oregan who has something called polymalgha ( not sure about the spelling). I don't get to talk to them very often. I feel bad about complaining about my medical bills now. I live near a base, and my husband is retired navy. Our meds are free if they carry them. Plus we get other meds thrugh a mail-order place, $9 for name brand and $3 for generic. We are very lucky! It's my doctor bills that are hurting me. They add up real quick as you probably know. I haven't seen my rhuematoligist for over a year. My primary doctor just chewed me a good one when she found out! I could not aford so many different doctors! I also have epilepsy , which means I was seeing a neurolgist. Plus I have ashma, they wanted me to see an oxegen therapist. Plus I have carpul-tunnel in both hands, and was seeing a hand surgeon who did one hand and then told me it would probably come back because lupus produces the stuff that causes carpul-tunnel. I'm still paying on that bill and it's been over two years! My eyes are getting real bad and they want me to see an eye surgeon for surgery. Plus my feet are giving me problems that require surgery. Most recently my back and knees are causing me lots of pain. I quit going to all of my doctors except my gp. I couldn't afford all the others. Thats not counting test and emergency room visits and hospital stays. My gp told me I have to start seeing my rheumatologist on a regular basis. Wow I let it all hang out, didn't i. Sorry. My rheumatoligist is very nice but other than steroids there isn't much he can do. I won't take them again! He talked to me about seeing another doctor at the mayo clinic in jax. More money I don't have. I think they should give us our disability without the hassel. There is no cure but they give us all this grief when it comes to helping us. Oh, did I forget to mention being depressed, that also comes with having lupus . Another pill! I must admit i've thout about writing someone like montel williams who has ms. Or even doctor phil just to let the world know we are out here, and we need to be recognized as serious disease.
how are you doing? I know just how you feel. I had knee surgery in april and the knee isn't much better. All that did was give me bronchitis and phen. I pray you can get on medicare and disability. The medicare only pays 80% of medical bills, but that helps a whole lot. It dosen't however pay for perscriptions.
I too often thought about writing to someone on tv, but I don't think they will listen. They rather have stories about nasty subjects then people with real problems. And, ya know these stars get the best of care. Unfortunately for people like us, that kind of care is far and few between. We are basically on our own. I try to read and learn as much as I can about natural products. I have a good herbologist that helps me a lot. Try taking bovine cholostrum. This has helped me so much. You can go to any health store and they should tell you all about it , or you can look it up on the lupus.Com. I found that site very informative. They speak of bovine cholostrum also for lupus patients.
Let me know how you are, keep me posted and if I can ever give you good advice on anything I find out to help us, I will surely let you know... Bye for now......
thanks for your advice and support. A very good friend of mine introduced my husband and I to herballife in '98. It was fantastic! We both lost weight and felt wonderful our doctors were very surprized and very happy. The results were amazing! I lost over 50lbs and went from size 16 to size 6 in about 4mos. Our doctors said keep at it. When we decided to move back to the florida area to be near our sons and our grandchilderen, the cost of living went up. Our morg. Alone doubled. But it was worth it to be close to our kids. the only problem was we could no longer affored our products. I wish the goverment would recongnize herble meds as a sorce of treament. The problem is with the pharmacuetical companys. They are afraid of losing money. I realize not all herbal products are good, but when you get good results, and your doctors approve. That can only be a good thing. :d if I can get on ss, I will drop most of my meds and start takiin my herbs again now I need to get off my rear and make an appointment with my rheu. Thats the first step towards getting my disability. Bye for now.
how are you doing? I remember using herbal life years ago. I lost some weight with it. Then after awhile it didnt' work anymore. I then lost 80 somersizing ... That is suzanne somers way of eating. It works very well. I don't care for atkins cause that can cause kidney problems and the gout. With lupus we need to be careful of those things. Its just hard to lose weight. but, we keep on trying! herbal life did go up in price, I noticed. But, what hasn't.. Right?
Keep trying to get on disability, you've got to keep trying and not give up. It does help. Not with the medicines, but with the doctor bills. Let me know how you are coming along... Thank you for writing to me, and I will always try to help. Bye for now...
And... Take care...
I just discovered this website and find it very interesting! In fact I posted a question so hope I get an answer soon. But about the weight - I lost about 10 pds since I had lupus. Not sure why except maybe with the meds im not hungry??? Im really not and eat smaller portions. I was only about 115 to begin with and of course have the upset stomach thing - no more jogging outside - I exercise inside near a bathroom. I also can be in the sun and don't usually get to bothered - once in a while the rash comes out, but I try to be careful. Im able to get color tho during the summer and have laid out. But I have the other problems. But exercise really helps also with the pain of lupus once you get going, which does'nt seem possible but it does.
Thats not entirely true. I've had quiet a few doctors including thyroid specialists tell me that lupus can affect the thyroid. I have it in my kidneys and in my thyroid. This can cause all kinds of crazy things to happen with ones weight. Until proper medication is given. Sorry to diagree but, i've got medical proof to back what I say... Yes, steroids can cause weight gain also. That happened to me too. But, make no mistake, lupus can affect the thyroid. Afterall it is an organ and thats what lupus attacks. I cannot say it can or will affect anyone else's thyroid, I am not a doctor, all I can say is what has happened to me. And, it can happen to any lupus patients. Hopefully it won't but , it can....... When my cousin was first striken with lupus, she lost her appetite and lost over 20 lbs., then, after seeing her physician and getting on the proper medication , her appetite returned to normal. Good luck to all.... Hadley
I never said it could not influence the thyroid. I simply implied it is not the norm...Point in case, only about 30% of lupus patients have lupus nephritis. Less than 10% have odd lymph node swellings caused by the lupus rather than a viral or bacterial infection.
Lupus can affect pretty much anything...I hope you get some relief with it.
hi lady brannon,
how are you? I tell ya the truth, i'm so discusted with it all. I cancelled my doctor's appointment 3 times. I looked up all the latest lupus medicine and the side affects are all so bad I don't want them either. I tell the doctor I hurt and he just stares at me with a blank look on his face. I've tried to find another rhem. Doctor near me but, there not even any listed in the phone book. Maybe a few, but I heard through friends that they are not so good either. But, today I feel better then I usually do. I think its the dampness in fl., that makes the pain worse. Some days is more damp then others. I need to make an appointment with the kidney doctor, thats an important one I can't neglect. I stopped my anti-inflam. Because its so expensive and was really not helping me anymore. I went off my buspar, the anti anxiety medicine cause that wasn't helping either. All I take now is the plaquinil, pain meds as needed, but don't take much of that either. It dosen't really take the pain away very well so no sense in taking it. Are you in pain? Well, thanks for listening... I know you know lots more then I do so maybe you can keep me informed... Thanks, bye for now........... Hadley..... :d