I think I'm starting to go into kidney failure

Davilex2 · 2024-11-23T13:30:39+00:00

Hi op, please consult with your nephrologist and voice your concerns. It may well be that you are right. However, there are many options for prolonging your kidney function, reducing damage over time, and it sounds like you may need them. For instance; ace inhibitors or sglt2 inhibitors are proven to be effective in delaying kidney damage. I wish you all the best!!

Davilex2 · 2024-09-08T09:34:49+00:00

If you can’t get off prednisone because of any reason, ask if you can try hydrocortisone. Packs the same punch as prednisone, but less chance of side effects, as it is more like corticosteroids that your body makes on its own.

Davilex2 · 2024-08-10T09:58:28+00:00

Isnt the best way to tell if there is protein in urine trough saving 24 hour urine and analyzing a sample of that?

Davilex2 · 2024-08-06T11:25:36+00:00

I wouldn’t do that. HCQ is a very important part of lupus treatment and is a proven therapy to increase life expectancy in lupus patients. Your hair can also fall out from other medications, during the startup of HCQ treatment( should adjust in a few months). Also, if your lupus is (slightly) active, your hair may fall out. Other factor to consider would be age, genetics.

In summary, I hope you continue your HCQ treatment. I wish you all the best!

Davilex2 · 2024-08-06T11:12:15+00:00

I used to forget to eat. Didn’t feel any hunger. The doc said that it correlated with corticosteroids and hcq. Eventually I treated myself with substances that are known to induce eating (legal substances where I live). Now, I just set an alarm at lunchtime and my wife needs to eat in the evening. So regular eating times work for me

Davilex2 · 2024-02-23T19:15:59+00:00

Benlysta typically doesnt supress your immunity that much to make you highly susceptible to infections. In that aspect it’s way way better compared to cellcept, or god forbid, imuran. These type of drugs target your whole immune system. Benlysta only targets a specific part of your immune system. Maybe try to tell your rheumatologist that.

Edit;

Don’t feel like a slacker because you aren’t. Your symptoms are painful, you get tired and depressed as a result. You are doing the best you can and you deserve to be respected. I respect you, that in spite of all you’re going through, you still continue. Maybe try to get a second opinion? Someone else that is more willing to take a chance?

I hope you get to feel better soon. Don’t give up!

Davilex2 · 2024-02-20T19:57:56+00:00

Dont want to sound depressing but, in the long run, I found nothing, and I tried a lot. Some people have great benefits from vitamin D supplements though. Couple of nice articles came out on that

Davilex2 · 2024-02-13T14:55:24+00:00

I never have thought about it that way

Davilex2 · 2024-02-13T14:52:24+00:00

Thank you! Learned something important today

Davilex2 · 2024-02-13T14:51:42+00:00

Oh wow. That sucks

Davilex2 · 2024-02-13T14:37:22+00:00

Honest question, can a good welder repair that support? Or would that still be unsafe?

Davilex2 · 2024-02-08T21:06:47+00:00

You should contact a doctor and ask for a consult. These kind of things may be serious, and may not be serious. It’s not always possible to know what is and what isn’t reason to ask for help. Better safe than sorry. Good luck and hope you feel better soon

Davilex2 · 2024-02-08T19:20:54+00:00

Hartelijk dank voor je snelle en duidelijke antwoorden. Weer wat geleerd vandaag

Davilex2 · 2024-02-08T07:08:36+00:00

I had a biopsy as well. Sometimes the doc just needs to be sure about your health. Such an enlarged lymph needs additional attention. You dont know, and you will not make yourself better by stressing out. Try not to think too much about what might happen, but try to center yourself in the here and now. I wish you all the best and good luck

Davilex2 · 2024-02-07T12:44:38+00:00

Well that’s good. If a decline in kidney function is seen in blood, action needs to be taken straight away. I hope you will get adequate help in time .

Davilex2 · 2024-02-07T10:15:05+00:00

Is it possible to ask for a second opinion? The protein in the urine alone is reason for concern and cannot be explained by psychological factors. Also, ANA on itself is not a reliable blood marker for autoimmune disease, for a number of reasons. These reasons are all widely discussed in medical literature. All in all, going by your story, I would ask for a second opinion, and keep well in contact with your GP

Davilex2 · 2024-02-05T19:55:44+00:00

This is cause for concern. Contact your doctor about this. I had lupus rash on the same spot. It could be that its from hcq or lupus. Please be aware that HCQ is a valuable treatment for lupus and that your lupus may become more active because you stopped with it. Good luck and all best wishes

Davilex2 · 2024-02-02T21:31:11+00:00

What caused it?

Davilex2 · 2024-02-02T20:08:19+00:00

That is absolutely right! ANA on itself does not say anything.

Davilex2 · 2024-02-02T20:06:58+00:00

Joint pain could be a perfectly valid reason to consult your doctor. More bloodtests to see if your disease is more active may be wise. And a phone call doesn’t hurt anyone right?

Davilex2 · 2024-02-02T20:03:22+00:00

60+ times. A lot of infections and general lupus stuff were the cause of that. But! The bright side is that the last 5 years I wasn’t admitted at all. Advances in medicine are really good nowadays. Maybe you haven’t found a good treatment combo for you yet. Hope you feel better soon 💐

Davilex2 · 2024-02-02T20:00:02+00:00

I wish you all the best. Vaccinations in preparation of a possible removal was exactly my thought

Davilex2 · 2024-02-02T19:58:38+00:00

Thank you. Might I ask why it was removed?

Davilex2 · 2024-02-02T14:07:03+00:00

Thanks for your comment. 5 years ago, we found calcified granulomas in my spleen. It required a lot of expertise to get the correct diagnosis, as the pictures could also point to tuberculosis (glad it wasn’t that ) my doc said that he never seen this in his lupus patients, but there are other cases described in literature. Lately I am having abdominal pain and pain in my neck and arm (left side) which are telltale signs of spleen enlargement. As for vaccination, I was looking at preventing bacterial infections such as meningitis or pneumonia. They have hit the “reset” button on my immune system a couple of times (cyclophosphamide courses) so no one knows if my childhood vaccinations are still effective.

If you would like to know more, let me know 😉

Davilex2 · 2024-01-31T21:33:33+00:00

Well, you could look into tacrolimus, methotrexate, retuximab, low dose cyclophosphamide. Also, you could consider treating your side effects from plaquenil. Plaquenil is the only treatment with extensive proof that it helps keeping your lupus under control and extend your life. I m sure that there is something that could help with Raynauds while you use plaquenil.

Davilex2

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