So I emailed my rheum. to let him know about the butterfly rash and if he had any suggestions. They finally called back today and said that the nephrologist will now be taking my case! I am so upset!!!! its been almost a month since my last appointment and they still havent told me what they want to do about the prednizone and cellcept. They first brought the suggestion up in July so all together its been almost 3 months since they brought it up but no results! I am so tired of being dragged around. My body is starting to negatively react to the prednizone and my local doctor saw no results after 24hr iv therapy. So i dont know what to do i am just ready to give up on it all....Every time i see them they just look at me tell me i am sick this is what we want to do and send me on my marry little way and they never follow through with what they want to do. I feel like a stupid guinea pig. And to top it off the neurologist thinks its all in my head even though the rheum. said my CNS has been affected...... I will be calling my local doctor tomorrow he is an internal med. doc. From the beginning he thought lupus but wasnt for sure so thats why he sent me to mayo clinic. But i am so ready to be done with mayo and just see my doc here.
The form of interstitial nephritis I have isnt usually found in SLE patients but it can be seen. They first thought it was from a reaction to medication i was taking for the ulcers. And if it was from the medication i should be completely off the prednizone... but no i am still on it...... So confused and upset!!
if you have a HMO group file a griebance against that Dr. and ask to be referred out to another Rheumatologyst and also you need to see a Nephrologist and a Dermatologyst sometimes is hard to make a Dr listen to you. But is not imposible Dont give up....
You do need to find a new Rheumy, and I might even ask the Nephrologist you are referred to. It appears that your rheumy doesn't know what to do with lupus patients, and that's okay. Better to find one that does. I know it's upsetting but you might think of it as a blessing in disguise. A nephrologist is vital if you have lupus nephritis, but a Rheumy should be considered a PCP for your lupus. At least I think of mine that way, even though I have a wonderful PCP which has been fantastic for keeping a record of who I see and what is going on.
Stress can bring on a flare, so please don't let this keep you up at night as it will work out.
I would call your insurance company and ask for a referral to another rheumy.
Thanks so much for the encouragement and help! We are going to talk to my PCP here in town and see what he says. We are such a small town we just have a small clinic/hospital which has no Rheumys and the closet clinic that has one sent me home with a mental diagnoses and gave up on me so we don't really want to go back there. And mayo is so far from us and costs so much money to get down there. Sigh... oh well. My PCP is fantastic and listens and understands enough about lupus. He was the one that thought of it first but wasnt 100% sure. I was explain my "black outs" and without looking at my tests he knew what kind of seizures I am having.....
Hi. I’m so sorry to hear about your struggles. I’ve experienced similar feelings and sought a second opinion from another rheumatologist. I think you should steer clear of anyone who tells you it’s all in your head. In my experience, I’ve had to try many medications to see which works and which doesn’t. Over a decade I’m still searching for answers. But, perhaps your internist can suggest another rheumatologist who may be proactive. Please don’t throw in the towel. We’re all here to listen to you and support you and offer guidance when we can. I know it’s tempting to say screw it, but please hang in there. Feel free to write me any time and I hope to be able to share my hope with you. Please keep us posted as to what you decide to do.
I know that Mayo is a long drive but research where you can stay and usually there are shuttles that take you right to the door of whatever place you are going there. You get test results very quickly. Good luck and prayers being sent your way.
I don’t know where you live but the hospital for special surgery in NYC has a specialized lupus center. If all else fails it may be worth the trip. They are a renowned hospital. People come from all over the world to go to their specialists. They recruit doctors and surgeons from different countries for their specialties. My brother in law had reconstructive surgery there on his ankle with a doctor that they had recruited from Africa. He found that there was an infection from the plate that a good doctor put in missed the signs twice. He could have died from it. He had an IV to his heart for a month. Just saying they are very good. You could check out their website even. I feel bad that you are struggling and so frustrated.
Thank you all for the prayers, support and help. We have been going to mayo clinic since May and every time we leave they just keep us hanging and not telling us what they really want to do. We are really surprised at it we thought it would be different. I have been going almost every month sometimes a little over they exam take blood and send me home and we dont hear back for weeks on end and only hear when we email them. then they want us back in a few weeks.... just a vicious cycle! So we are waiting to decided what to do. The nephrologist is supposed to call me back.....
I have been seeing a chiropractor which has been helping A LOT! He is in to, as he says, clean foods. So I am trying to start eating more fresh fruits, and vegtables. As well as trying to go gluten free and cutting out processed foods. Its hard sometimes, especially if I am having a "bad" day. And I am going to be trying to get to the pool at least once a week.
I am in the processes of getting a HUD apartment which has really boosted me. Getting excited to still be able to experience moving out and having my own place! Its also handicapped accessible so I will be able to get my self to and from school. Its in a assisted living place so if I ever need assistants they are there to help and its only up the street from my mom.
Sorry to hear this. It seems I hear more and more stories here every month about rheumatologists getting patients, and the reason has been medicare's new rules, that deny payments to specialists for some reason. So if you are on medicare, that could be the reason he will no longer take your case.A good internist that knows about lupus might be an alternative. That's awful that the nephrologist treats you that way. That is not helpful!
Although I agree with most of what is said, especially about diet changes (it's helped me immensely) I would suggest perhaps finding a PCP that is perhaps into sports medicine, like mine or open minded about some alternative medicines. The reason I say this is that, to simply stop whatever meds you are on without proper supervision could be very harmful.
And, although many of us have tried alternative medicines, myself included, remember that some of these can be harmful as well. Natural does not always mean better or safer.
Research is never a bad thing, however if you are still taking meds from a doctor you must always look out for adverse reactions.
I do hope you find a doctor that specializes in lupus, which is apparently what you need. I also agree that anyone that sends you away because "it's all in your head" is probably not that doctor.
Perhaps a search of Rhuemy's within a certain distance with training in lupus may be a better way to go than going to a huge hospital where you get lost in the shuffle. Our disease is fluid and you need someone that can be fluid as well.
I would try them but it is difficult for me and others to find these alternate types of physicians and medications. How did you find them where you are?
lone wolf said:
My experience has shown me, since my diagnosis in 1993, that there is a world of medicine out there. Western treatment is not the only available means of getting healthy. Explore the Chinese approach, homeopathy, food as medicine. Although the lupus that I experience is sever at times, I have never taken a steroid, pain killer or any of the other toxic chemicals that comprise the Western treatment. People seem to get stuck in the tunnel of MD's, fancy clinics with big price tags, and the cycle of up and down, mostly down. Step out of the western approach and find doctors, therapists, practitioners from other parts of the world who have been gracious enough to bring their brand of medicine to the US.
Thank you, Lone Wolf. I tried acupuncture and a couple of things she recommended for several months and felt no better at all. Then we moved. I will do some research on this. Rita
I agree whole-heartedly. My only concern is that many people don't understand that even homeopathic remedies can have adverse affects if mixed incorrectly and not properly supervised. This is why I LOVE my PCP. He is very much into alternative as well as western medicine.
As with any change in medical protocol, it needs to be closely supervised as a safety precaution. I have a prescription for Valium, but use Calmes Forte first. This helps me both with anxiety and sleep, however I asked my rheumy, who is from India and my PCP what the possible interactions may be.
It's a valid approach, but one that should be considered as closely as anything being suggested by western medicine.
My PCP is great with other alternatives. He had suggested me to do acupuncture, and I have done that several times. I didnt really see much of a change in my headaches which was the main reason for it. I would like to go back but its not covered by insurance and right now money is tight. When we have the money I would defiantly give it a shot again. I had it done when I was in the hospital and it worked wonders after not sleeping well for days I got a nice power nap from it.
Our church has a lot of people into homeopathic remedies and essential oils. We talked to people about taking a certain homeopathic remedie (dont remeber the name) thats supposed to be great for people with lupus. They said it wouldnt cause any noticeable damage but it would with out knowing make the medications i am on work more than its supposed to so I would be overdosing and not even know it. My mom went to meeting about essential oils and they said that they are so potent and not knowing what they would do to my body they recommend me not to sniff or put on the oils. the lady who did the meeting also told my mom that there are two essential oils that you can mix that makes the oils work like morphine.
HSS is AMAZING! And they are so kind and caring. I met a bunch of their doctors and patients at an event last night and I was astonished at how well the doctors regard their patients. If I have another flare I'm going there!!!
Jend719 said:
I don't know where you live but the hospital for special surgery in NYC has a specialized lupus center. If all else fails it may be worth the trip. They are a renowned hospital. People come from all over the world to go to their specialists. They recruit doctors and surgeons from different countries for their specialties. My brother in law had reconstructive surgery there on his ankle with a doctor that they had recruited from Africa. He found that there was an infection from the plate that a good doctor put in missed the signs twice. He could have died from it. He had an IV to his heart for a month. Just saying they are very good. You could check out their website even. I feel bad that you are struggling and so frustrated.
SO I HAVE LUPUS NEPHRITIS TOO AND WAS UNDER THE CARE OF THE NEPHROLOGIST AND ONCE M KIDNEYS WERE UNDER CONTROL THEY STOPPED SEEING ME AND SENT ME BACK TO MY RHUEMA AND ABOUT THE NEUROLOGIST FORGET ABOUT HIM PERSONALLY ASK FOR A PSYCHIATRIST IT HELPS TO LET IT OUT AND HAVE THEM AGREE WITH YOU IN A SENSE. I WOULD CALL YOUR RHEUMA AND ASK HOW WERE YOUR LAST KIDNEY TEST AND WHAT ARE YOU TO DO IF YOU HAVE A LUPUS FLARE? KEEP YOUR HEAD UP BECAUSE THE RHUEMA CAN'T JUST STOP SEEING YOU THEIR GOAL IS TO EVENTUALLY TAKE AWAY THE PREDNISONE TRUST ME I KNOW I TAKE IT TOO.
Well, we heard back from the nephrologist and he is willing to follow through another doctor closer to home so thats what we are going to be doing. My mom did some calling around to try and find doctors that are familiar with lupus. She called the neurologists and asked his nurse if he knows anything about lupus and told the nurse we have been told by 2 neurologist its all in her head we arent doing it again. So she called back and said the neurologist does know about lupus. 3 times the charm right? we are also going to be finding a new rheumatologist. hoping they can get everything figured out and get me on the right medications so I can start living my new "normal"..... I am very thankful for my mom who is willing to help me through this and push till we get it right! :)