Hi, new member introducing myself

[HORSE]

Hi All,
I am new to this emailing lark and a bit unsure of what I am doing, so here goes and I will introduce myself.
I am a 40 year old woman who two days ago was told that following a kidney biopsy I have been diagnosed with grade two lupus nephritis along with a history of diabetes for the past 30+ years. I currently work as a staff nurse on a part time basis as I find the tiredness is too much and I can only work for a short time before I have to go to bed. I enjoy horse riding and own a 16.2 hh arab cross but have found riding too much just lately and can only do it for short bursts at times when I feel good.
Is there anyone out there who also suffers from lupus nephritis grade two (nothing to do with the diabetes) and has extensive bruising and weight loss (I have lost 3 1/2 stone in 3 months) and extreme tiredness? Also has anyone else suffered from loss of feeling in their right side, numbness and tingling in feet and hands and double vision in their right eye? If you do could you let me know as my Doctors are very confused as to why this is happening.

[Katharine]

Hi there,
I'm afraid I really can't answer you on the medical things. I do get numbness which is worse in my right side (but everything always seems to start on my right side and then move on to both). In a flare like for the moment I find driving difficult, or even dangerous as my feet and hands go to sleep on a drive.
I too was horse mad, I used to work with them and until recently had two of my own horses - A welsh cross stallion and a lusitanien gelding. Unfortunaltely after my divorce I didn't have the place or money to keep the stallion and he was sold. He is doing really well in dressage competitions now, so that's great. The gelding went back to his breeder earlier this year, I just wasn't able to ride hm enough and it wasn't fair on the horse. I only have weekends now as I can no longer work in horses - too physical and too much sun - I still give lessons to help people out and could ride whenever I want but it's not quite the same without my own "project" to work on. Recently my muscles react so severely to any effort that I can't ride right now, I can't ride dressage at all any more even when I'm feeling good because my hips won't allow it but a good trek in the woods will be something to look forward too when things look up a bit.
I hope you keep enjoying your horse as much as you can, it's a great way to forget evrything else.
keep trotting along,
Katharine

[Salopsally]

Hi there,
I dont quite know what sort of Lupus I have as been diagnosed but not seen the specialist yet to talk about it.
But I too have numbness, coldness and tingling in my right hand and foot and seem to have a twitch in my right eyelid.
What a weird thing this. I keep thinking my symptoms must be in my head then I see someone else on here with similar things.
Shame you have both had to give up such an active lifestyle. Im frightened of horses a bit but probably coz Ive never had anything much to do with them. Sounds great though.
I also suffer from the extreme fatigue. Makes me feel very lazy but suppose thats because Ive always worked very hard in the past.
Great support though this site Horse. Ive only been here a couple of weeks and Ive learnt loads.
Wish my specialist would come here and read the posts sometimes he might have a greater understanding. (maybe he does). Seems it would benefit a few GPs too.
Hope things go ok for you.
Sal x

[Clare.T]

Welcome to the forum ! :)

I am sorry about your diagnosis. There are a number of possible reasons for your other symptoms as you probably realise including the diabetes. Lupus itself can cause peripheral neuropathy which might account for the tingling. So can anemia. There's something called optic neuropathy and several other diseases that might cause double vision
The trouble is that lupus can affect people in so many ways but there are so many symptoms that can be caused by other diseases. If you find somebody with the same symptom the cause might be different.
Are you seeing lupus experts and have they referred you to other specialists.

If you haven't already done so check out that you have had all the usual tests, including those for a blood clotting condition called APS, anti phospholipid syndrome. Bruising can be related to thrombocytopenia and a number of drugs can also lead to easy bruising, like Prednisone for example.

I hope you'll have a speedy response to medicines and be feeling much better very soon. Apart from medicines, it's important to adapt one's life, not always easy either.

Let us know if you need any help using the forum

Bye for now

Clare

[raggedyann1]

Welcome to The Lupus Site. This is a great place to meet other people with lupus who can identify with the things going on in your body. I am wondering if you have been seen by a rheumatologist yet? or have you been diagnosed by a nephrologist? Kidney doctors are often not aware of all the non-kidney issues that can occur with lupus. When I first "got" lupus I had numbness and tingling in my left hand and fingers. The fatigue is normal for all of us, in some ways the most dibilitating part of living with lupus.

Once treatment was started the numbness/tingling went away and over the last 19 years I have only had it re-occur briefly a couple of times. Other things like the weight loss, double vision, etc often improve considerably once treatment has been going for a few months. What treatment are the doctors recommending for the nephritis? That treatment will also help your other lupus issues. You may find that a little ways down the road you can ride your horses again. Most of us who post here regularly are on the "sicker" end of things or newly diagnosed and waiting for diagnosis. For the first many years with lupus I was able to continue doing many of things I loved to do, including traveling.

Take care,
Karen

[HORSE]

Hi Karen and everyone else,
Thanks for your responses. I have been seen by a rheumatologist, diabetologist and a renal consultant, as the renal consultant was sure that I was right when I mentioned that my symptoms maybe Lupus. He waited until I was seen by the rheumatologist and until they had the full results of the kidney biopsy, before they confirmed that I had grade two lupus nephritis in my kidneys. I had all the blood tests and I am positive to anti-nuclear antibodies and have low sodium, low inorganic phosphates and high creatine and high protein in my blood and my CRP was high as well, which apparently all leads them to concluding that this is lupus, although I am not anaemic at all rather the opposite. I have osteo-arthiritis in both my hands, but just in the fingers, I had septic arthiritis in my left knee a few years ago and currently I am awaiting an insulin pump as I am on 6 injections a day, which has caused my legs, arms, stomach and bottom to get scar tissue, which makes injecting difficult. I got an appointment today to see the rheumatologist on the 26th July to talk about medication, but he wants to start me on hydroxychloriquine (I think you spell it like that) and to see how things are developing from there. They do not want to start any other treatment for my kidneys, as although I have microscopic haematuria, I only occasionally get macroscopic and my worse time tends to be when it is my time of the month, which is horrendous. I cannot go onto any steroids because I am diabetic and this alters the blood sugars to much and cause hyperglycemia and he said that if the first drug does not work then it will have to be immunosuppresants, so here's hoping my symptoms get better on the first drug offered.
Thanks for replying everyone and my horse is now in his new stable which is two mins away from my house and as an ex-eventer he is currently exploring the water feature in the bottom of his field after all the floods today.
Email again soon.
Horse:wink2: :wink2:

[Maia]

Welcome HORSE from another horse lover. I used to do hunter/jumper but sold all my full size horses except my old mare who is in retirement these days in her mid 20's. Now I have miniatures & I do driving instead of riding as that is easier for me to do....

The others have given excellent advice - I just want to forewarn you that hydroxychoroquine (aka Plaquenil) can take 3-6 months to take effect and sometimes longer. It is also usually not effective enough to treat kidney disease; it's better for fighting against fatigue, joint pain, rashes. So don't be surprised if you end up needing to move on to another treatment better at treating kidney problems caused by lupus.

Anyways, take care and maybe see you in chat some night ;)

[HORSE]

Hi Maia (I spelt that wrong I know),

My rheumatologist did say that it may take some time for this drug to work and that he is hoping that it will help to reduce the inflammation in the kidneys, but that due to the lack of co-ordination on some days where I walk and my legs and arms go in different directions, that it hopefully should help control this. I am hoping and will remain as positive as I can, but they have told me that I am ill and having been in denial for a long time, it has been a bit of a shock to admit that yes, I am ill afterall. But I have lived with diabetes for 30+ years and this is just another disease. Is it true that lupus in the kidneys is very dangerous? I looked up grade two in the world health organisation chart and they state that grade 2 can lead to good progress without ever the need for further medication? I am hoping that due to my not having any damage done by the diabetes in the kidneys, that I will be able to stave off dialysis forever.
Anyway must go now and try and get ready for tomorrow as I am feeling better after sleeping all afternoon.
Regards.
Horse:p :eek:

[raggedyann1]

Horse,

When lupus attacks the internal organs it is considered more serious. However there are many treatments being used now especially for kidney involvement that the prognosis is not like it was 20 years ago or even 10 years ago. It is important that you be monitored regularly to keep tabs on everything especially the kidneys. Our doctors usually have blood work done at regular intervals so that anything that changes can be caught early on.

Lupus is a serious life long chronic disease. For many of us the sun is our enemy even when we don;t get lupus rashes from it. Since you have had diabetes for a long time you are probably in tune with your body to some extent. Our doctors go on what we report as much as what our blood tests say. The biggest change I have had to make is too not push myself. Our culture has taught us to push through things and keep going after our bodies start warning us. With lupus we have to stop when our bodies start complaining as pushing through can cause a flare up.

As you are reading on the internet please disregard anything that is more than 5 years old as it is most likely out of date. Read through the forums here on threads that interest you and you will get a better grasp on your lupus.

Take care,
Karen

[Lily]

Hi Horse,

It's very possible that with Grade 2 Nephritis that Plaquenil may help calm down your disease activity. But it really depends on the individual, and that will be a wait and see. For me I ended up having to have Azathioprine in addition to Plaquenil to sort me out. I was never staged, just had constant red cells in urine, worse after sun exposure, and worse as time went on. I then started getting protein and if I went in the sun at all that protein jumped up to 3+ on dipsticks, although kidney bloods remained stable. Because it was a constant problem and a slightly worsening one, we chose Imuran and thats controlled it.

But thats my story, not one of us can predict what course our lupus will take, and really we have no control over that. I think your doctors stance sounds like a sound one though for now as long as you are monitored very closely.

As far as your numbness/tingling and blurred vision then I think its a really good idea to be evaluated by a Neurologist. We can get all sorts of peripheral nerve problems with Lupus and even some central nervous system problems so they need monitoring and a good Neuro, to see if Lupus is the culprit. Again stronger meds than Plaquenil may be needed, but that is also unknown in this stage of your investigations.

For others who may be interested here is what World Health Organisation has to say about Stage 2 Lupus Nephritis:

Class II
Mesangial proliferative lupus nephritis

Light microscopy findings:
Purely mesangial hypercellularity or mesangial matrix expansion with mesangial immune deposits

Immunofluorescence electron microscopy findings:
Mesangial immune deposits; few immune deposits in subepithelial or subendothelial deposits possible

Clinical manifestations: These patients have mild renal disease such as asymptomatic hematuria or proteinuria that usually does not warrant specific therapy.

For a look at a very comprehensive article on Lupus Nephritis and the other stages:

http://www.emedicine.com/med/topic1597.htm

Hope this helps and good luck!

love
Lily

[HORSE]

Hi All,

Thanks for your replies. In response to some of the questions, I am currently awaiting an appointment to see a neurologist as the rheumatologist was a little concerned by the headaches and lack of co-ordination on the last visit. I had an MRI scan which did not pick up anything, but today I got the results of the 24 hour urine test and I was positive for glucose (no surprise there) and protein and creatine, but sodium and phosphates were ok. My serum bloods showed a normal range for urea aswell and that is good too, so all in all I am more positive than I was a few days ago. I am aware just how serious Lupus is and it has scared me when I push myself, just how ill I become, but thanks to sites like this one, you do not feel so alone in the world after all. I was very depressed to begin with as being diabetic and now having lupus was just a little much, but we only have one life and I am determined to enjoy this one as much as I can.
Speak soon and Thank you everyone.
Horse:eek: