My lupus comeback update: Something is better, something worse..

The good news is.. I no longer have joint pains.

The bad news is.. Lupus is still attacking my kidneys.

I was tempted to put the title as ‘It is not getting any better.’ but I know better to beat myself down at this stage. After all it is supposed to be an experiment, is it not? Since there are different outcomes for experiments, the only reasonable thing to do at this point of time is to change the way how things are done.

My protein leakage is increasing from 112.8 to 191.1 when the normal range is <50. So what the doctor did was increased my medications. He said it might take months for the medication to take effect where the protein leakage might reduce.

There are two types of main medications to manage joint pain and suppress the immune system. The prednisone (steroids) manages the joint pain whereas the cellcept (mycophenolate mofetil) is a stronger form of immunosuppressant, to tame down the confused immune system army carrying out a siege at my kidneys.

PCR 080118
8 Jan 2018 – Urine Protein Crea Ratio

 

Well what are my thoughts? (Apart from those self-defeating thoughts that lingered around for an hour, during my drive back from the hospital)

The obvious next step was to do something differently, in hopes that the results will improve in a months’ time. So I have been doing the stress-free routine for the past three weeks, and maybe it was not good enough. My next first step is to manage my diet. I was looking at my daily food:

Carrot, apples, cucumber juice

Oats with an egg and cheese (high protein)

Almond nuts (high protein)

Meat 150g (chicken/fish/beef/pork) (high protein)

broccoli (high protein)

carrot

potatoes

mushrooms

I realised that I might have been taking up too much protein daily. Too much protein causes a strain to the kidneys, having to do more filtering work while under attack.

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“Hey please help me build more buildings while you’re under attack!”

Not a sensible decision I suppose.

So I am going to cutdown on the meat. I will only eat meat on alternate days. I am going to start an alternate vegan day routine and see where this heads to. Also to reduce intake of salt. Which means the processed food must go. Goodbye Cheese!

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You will be missed..

 

I got in touch with a few lupus nephritis patients who have gone through this. Some took almost a year to get their readings down to normal again. Their advice? Listen to the doctor and take care of your diet. Be positive about it. I am glad that someone who has been through this told me that it does indeed take time.

I am seeing the doctor again in another one months’ time. Sometimes I wondered if I should see the doctor so frequently if the medication is going to take time. Does that not increase my anxiety since I would only be seeing the process when my body is still recovering from all that scarring?

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“Give us some time, we are still patching it up!”

We shall see how it goes. At least I do not think I will be so worried if I see that the readings increase further. At the mean time, I will just heed my fellow lupus comrades’ advice to stay positive, eat right and stay active. Stay out of the sun. Relax and do not stress over anything.

Fingers crossed!

Author: Li

The journey with my friend - Lupus, 500 days and counting after I was diagnosed. I like writing, climbing, reading just about anything, watching inspirational movies and movies with a twist, and striving to reach financial independence as soon as possible.

11 thoughts on “My lupus comeback update: Something is better, something worse..”

  1. As I was reading this I was thinking “I wonder if she’s on prednisone and cellcept?” You are so that’s good.

    My next question would be how much? I also have Lupus Nephritis & my protein levels were sky high when I was diagnosed. I was on 60mg of prednisone and 3000mg (6 pills a day) of cellcept. After about 2.5 years I’m just recently going down on everything. Protein levels are good and stable. So it does take time. We tried to wean myself off about a year ago and everything striked back up.

    As far as diet goes my doctor said:
    No white carbs
    No salt
    Not much potassium

    😒 believe it was hard and miserable and I cheated a lot lol

    I will say I’ve been taking turmeric pills 1 a day, after several people mentioned it, and so far it’s limited my pain. I can get up off the floor without much hassle as opposed to a few months ago where I literally had to be helped up every time.

    As long as you’re getting labs done regularly it’s okay to go once a month. If it’s every other month, I think that’s fine too as long as labs get done regularly. They can watch it by that as well, and should tell you immediately if anything looks wrong.

    It does take time. And sometimes you’re not able to be weaned off things ☹ but hang in there. I would be mindful that [apparently] extended periods of high doses of cellcept can lead to horrible stomach issues as the case for me over the summer. And of course prednisone for long periods reduces bone density.

    💜💜💜

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  2. That was really an elaborate reply and I really really appreciate it. ❤❤. I am currently having 15mg preds (week before new year was up to 40mg) and 1500mg cellcept. Thanks for the suggestion in terms of the diet and I think I have to track what I’m eating. Gosh I hate to leave the cheese in the fridge alone! 😅 Another thing is ever since I increased my steroids I always wake up at 3am, stay up for two hours and feel tired again at 7. But continued going on with my daily life anyway. This probably might have triggered it. Any suggestions for better sleep? Not that I don’t enjoy reading and blogging during that two hours but I think it’s taking a toll.

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  3. I do not have lupus nephritis but I do have SLE and I can say that your fellow lupus comrades are right when they advised you eat right. The alternate vegan day routine you’re thinking of incorporating will help out a great deal. I know it has helped me tremendously with my lupus. Good luck to you on your journey 🙂

    Liked by 1 person

    1. Thanks for your wishes. 🙂. Sometimes we can only try our very best and leave things to luck. I told myself maybe this time it only has half to do with efforts..

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  4. God bless you and I will keep you in my prayer from one lupus warrior to another!!! Just live as much as you can and love as much as you can. I decided that this disease was not willing anymore. Sometimes it seems like it is but I keep finding a way and I know you will to. I am new to bogging and have no idea what I am doing but I am learning from people like you!! How do you get followers’? I hope you don’t mind me asking? Do you just publish and people see it on wordpress then they follow? Just curious and again prayers

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    1. Thanks! Same goes to you too! Well actually I have been pretty slow in getting followers, didn’t do things like commenting much on forums plus they won’t allow me to put my blog address anyway. My followers just happen to read my articles on a topic that they are interested in, mostly through wordpress’ “recommended for you”, read one or two more and decided that they may hear from me every now and then. I don’t have many followers yet, but they are coming in slowly. I suppose just keep writing, and volunteer your articles to a lupus support group so that they might help to share. 🙂

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      1. Yeah just keep at it!! I am with a company that has changed my life and lupus. No cure and not a miracle but it helps me. I wanted to blog before this but now I am inspired

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