I haven't been on for a while and I'm sorry for not keeping up with everyone. My life seemed to be going along "par for the course" with the FMS and Lupus, just the usual aches and pains and misery. I've been going to the local clinic since my move to UT and I really believe the PA has helped me more than my old intern did in CA. He has monitored me more closely and has sent me for needed tests. This gets to the concern I have tonight about a visit to the nephrologist I have tomorrow.

My lab work as been showing a low GFR (glomular filtration rate), and now it was down to 42 and I had protein in my urine and high protein in my blood. According to the scales, I'm now at stage 3 of chronic kidney disease; their are 5 stages. I don't know if it's due to the lupus, to the vasculitis, or ... something totally unrelated to the problems with lupus.

I would like everyone to not believe their aches and pains are always because of the lupus or an FMS problem they may have. I've been doing that and thinking the pain in my sides have been because of inflammation in the rib cage or muscles in the lower back or sides from sitting, etc. Always thinking the cause was the FMS or Lupus. I should have known that it was kidney related, after all I'm a nurse.

Perhaps whatever is going on, I can get it under control and not risk getting GFR's that are any lower. I would appreciate everyone sending good thoughts and prayers my way. My husband just won't talk about my problem. I think he thinks if he doesn't talk, it isn't real.

Jeannette

When I went to the nephrologist, I asked my husband to go in with me. The doctor was really wonderful. He took his time with me and explained everything very well. My husband looked shocked. I think he finally understood that the numbers mean I have 42% of kidney function. The doctor didn't mince words. He explained that the damage isn't reversible and he felt it was due to the lupus. My husband and I haven't stopped talking about all the ramifications including the fact that if it goes to zero I go on dialysis and more likely than not would not be able to get on a transplant list because of the lupus.

Next week, I go in for labs to see how the lupus is doing and will be submitting a 24 hour urine. I will see the doctor in 3 weeks and depending, meds will be adjusted or I may have to be scheduled for a biopsy to be certain what's causing the kidney failure.

Will keep you posted as I know what's happening next. Again, thank you. Your words were comforting and supportive, I appreciate the post very much.

~ Jeannette

I haven't been here in a while...I'm sorry to hear about the new problem.

Do you have nephritis? I know a woman who had Lupus nephritis (Stage 3 or 4), treated with Cytoxin, and was told the damage would reverse. I'm confused by the fact that you were told it wouldn't. Are you being treated at all?

It's good to hear from you!

Yes, I'm being treated for the Lupus by the same rheumatologist and was referred to the nephrologist because of the 42% shown by the GFR. Several (4) low GFR's along with the protein in the urine put me at stage 3 as far as chronic kidney disease (ckd). The nephrologist was very firm as he told my husband and I (more than once, my husband had to hear it a 2nd or 3rd time) that the <b>kidney disease couldn't be reversed.</b> He told us that as long as the lupus was stable and I didn't have flares it would more gradually go down but in fact will go down, just not at the steep rate that flares will cause. When it gets below the 30 mark and to about 10, we'll begin talks about hemodialysis.

The nephrologist "thinks" the ckd is because of the lupus and can't be certain without a biopsy. I probably will need to have a biopsy to make sure it's the lupus. The nephrologist told me that lupus could affect the kidney something like 6 different ways. I know I have vasculitis because of the lupus and the ckd could be due to the vasculitis, indirectly from the lupus. Maybe some of the tests this past Tues will help determine need for biopsy, other cause, etc. I'm going in tomorrow to pick up the tests so I can go over them before my appt with the nephrologist on Aug 6.

I'll keep this thread posted on what happens and the process. Never know, it may help someone in the same situation.

Oh, Sandy ... I learned recently that there is a new female rheumatologist in St George just down the hill and I need to get a referral to her from my PMD at the clinic here. The nephrologist was adamant I have someone closer to treat the lupus so he may discuss my medical care and treatment with that person. I don't know her name yet, I hope she is easy to talk with and won't decide to do a lot of repetitive tests. That really runs up the cost and I'm already feeling the pinch with all the specialized tests!

I will keep you updated on what happens via this thread - going back to nephrologist on Aug 4 for more direction and discussion of labs, etc.

How are you doing these days? I'm sorry your husband was diagnosed with MS. That puts a crimp, so to speak, on helping each other, etc.

Please keep us updated re your health as well ...

Jeannette

I've been taking Plaquenil since about 2006 for the lupus. I was told that it keeps inflammation down. I've had no problems with the Plaquenil and I can't say it's helped all that much. It may have somewhat. With the flares I've had to take prednisone to get them under control.

Glad to hear your hubby is healthy as you will need his strength at times.

Jeannette

Plaquenil is a disease modifying drug and supposedly aids to suppress antibody production. It also acts as a protection against clots for those who have APS. That's not to say someone won't have antibodies or clots, but they could have been worse without Plaquenil. I feel much safer taking it and hope I never have to stop. It did help my joint pain a lot, but that is the only physical symptom it seems to have helped. But then again, if I hadn't taken it, things could have been worse.

I hope you get some answers this week, Jeannette. Keep me posted.

If you get your records forwarded to the new Rheumatologist, maybe they won't need repeat labs. I always get copies of all of my labs so I can take them with me to new docs.

Thanks for the info re Plaquenil. I take it as I know things could be worse without it. I still haven't gotten the referral for the Rheumatologist but have all labs with me to take when I do go. I really wanted to get it before going back to the Nephrologist as getting one here was part of my "to do" list. I'll keep you up-to-date on what the nephro says. Thanks again!

Hi jeanetee,
So how has the lupus nephritis been? Is it still at level 3? I have had it on level 4 for almost 2 years now and have been treated with Cellcept. What you being treated with???
i HOPE YOU ARE FEELIGN WELL. :) It is so horrible how it can make us feel horrible. By the way do you get any ankle sweeling I have had it for over 1 month now and it is starting to really aggitate me.
Talk soon
Anita

My visit with the Nephrologist went well and lab results showing the lupus is under control at this point with the Plaquenil so no other drugs ordered. I see my rheumatologist a week from this coming Monday and will take the labs with me. I am still at stage 3 and holding with 42-47% kidney function. I have had swelling in my feet and ankles and some other problems that I'm not sure are related to the kidney problems ... maybe back to the FMS. Just a lot of aches and pains. I have had the flank pain though. The doctor clarified that type of pain versus the pleurisy pain I get.

It seems many problems are "blurred" into each other and it does get frustrating. Because of the low kidney function, I can't take a lot of the medicine for some other problems and when I go to the dentist I have to be careful to not be put on any antibiotic that the nephrologist isn't aware of. The nephrologist also told me to be careful of getting any infections like, yeah right ... I have two grandkids that I'm going to see over the fall winter period. I always get sick when I am with them, but I am going to see them.

It would be good to wake up at least one day and be able to feel what I use to feel, i.e.: "Isn't it a beautiful day! Need to get rolling, now what should I do first. Start the chores or go shopping?" Sometimes it's just plain hard to get up.

Enough self-pity and complaining. I know many of us have these problems and worries - does feel good to write them down. Just really tired tonight after traveling with my husband to a reunion and getting back rather late.

Take care and I will be in contact soon, and please let me know how all of you are doing.

Jeannette

Sorry to hear about all your kidney problems. I always was told pain was infection and not kidney failure. Am I wrong?

If you are taking plaquenil, you should really have your eyes checked at least once a year. My rhemie always asks this.

I am terrified of kidney problems. I do know my functions are down but not as drastic as you all. I had my general doctor show me labs once and explain that it wasn't anything to worry about. However, I take a lot of meds and have chronic uti's coupled with the lupus my kidneys are getting pounded. My urologist said that it will eventually effect my kidneys if I don't get the uti's under control especially because they are so severe and occurring every four to six weeks.

I have to agree that just getting everything out helps. You really can't dump but little bits on friends because of many reasons ... to much to get into here and now. But this is a good way to just let it all out and feel better because you actually talked about it of sorts.

Hope this finds you all doing well,

sparrowdove

I'm again fighting an infection with antibiotics from the nephrologist ... no fun, huh. I know how you feel.

We are going to my son and daughter-in-laws and are on the road there right now. They live in S Carolina and we are in TX today. Taking it slow .... I've had some bad days on the road this course of travel and I think it's the antibiotic. Last pill is tonight and can't wait to see if after I'm off it the symptoms I've been feeling are gone.

We'll be back east until after Thanksgiving this year and I'm hoping all is stable while there. I'm so grateful for being able to go back there! Miss my grandchildren terribly.

Take care and hope you are feeling better and able to get those uti's under control.

Jaltair, I note you have and ancestor with the same name as mine. By coincidence, my ancestors came from Grantham, Lincolnshire as well - interesting. PS I am a CFS sufferer and not a lupus sufferer, although I believe from my medical experience that exposure to pesticides is a risk factor for a positive ANA, based on our Australian research

It's good to hear from you and very interesting that we may be connected. I'm curious, did you find the information from a genealogy program online? I'm traveling at present and away from my PC with all the information. It seems I have the Whiting name traced back for a good time. I had heard that pesticides could play a problem with the immune system. I'm a nurse and believe that there are many environmental factors playing havoc with our immune systems and causing cancers as well. As a nurse, I have done some public health followup with these factors; however, politics (local and higher) play a big role in keeping the knowledge from the public. Sad. Take care and stay in touch please.

Hi... my name is Sharon... this is my first time on this site. I just went through a really bad flare with my lupus and as a results I had Kidney problems as well. The doctor is talking about a kidney biospy. I have lost a lot of my hair, so wearing a wig at this time and I am anemic. So lupus can set one back at times. I am not sure what the FMS is that you speak of, but if it's fibromyalgia,(I may have mispelled that) then I have that as well, infact was diagnosed with that before lupus. I am just looking for someone(s) to talk to occassionally about Lupus and it's effects. My husband doesn't talk a lot about it either but it did get his attention when they told me the hospital that I was in Kidney failure. I deal with all this well I believe, however, there are times that talking does help. Hope to hear from you and I will surely keep you in my prayers. Sharon

I just noticed on your other post you are 64; I'm 63. In years and experience we have a lot in common. I'd welcome someone to talk with about lupus / kidney problems anytime. I was diagnosed with fibromyalgia quite a while back, then with the lupus, and now with the kidney disease. I'm not wearing a wig as yet but also have noticed a lot of hair loss; also the anemia. My doctor told me to take Vitron-C (a high potency iron with vit C) on an empty stomach - I was told the Vit C helps the body absorb the iron. I noticed a difference on my lab about 2 mo after starting it. Are you taking anything like this supplement?

We are on a visit to my son's way across the US from where we live in UT and the goal is to just keep me stable. So far, no flare. I'm supposed to not "get stressed" - that's kind of a crazy thing to say to patients. I remember hearing it for most of my adult life now. LOL .. No flu or other illnesses as yet and we are about 1/2 way through our visit. How in the world do you keep healthy when you want to be active and involved with two physically active 9 and 10 year olds? I'm really enjoying it all though. I just have the really bad fatigue and sometimes nausea and then just have to rest. My son has had a hard time grasping the concept of kidney disease and eventually looking at dialysis; however, maybe by the time the visit is over, he'll understand better. They are just use to grandma being more active I guess.

Take care and it's good to have a friend with so much in common. You are now in my prayers as well Sharon!

Jeannette