FSGS and cyclosporin...

[Willitgetbetter]

My husband was diagnosed with FSGS 10 months ago. He managed only partial remission (with proteinuria 300) with 90mg of prednisone and is now on 100mg of cyclosporin 2x/day. Long story short, he is virtually NON functional. Cannot walk for more than 10 mins (exhausted and sore body, feels awful, mildly nauseous), cannot think properly, has not worked in 11 months. I guess I am wondering if this is normal.....we keep expecting he will start to feel better...we need a silver lining...

[Bet117 NKF Ambassador]

Hi Willitgetbetter,

I can just imagine your frustrations with treating the fsgs as I know that it is not easy.

First, have you brought the side effects that your husband is experiencing to his nephrologist? Communication between patient and the entire medical team is very important.

Has your busband's nephrologist ordered regular toxicity tests to monitor the levels of cyclosporine in the blood?

How frequently has his doctor ordered basic labs as a CBC, electrolytes, kidney function and protein spilling? What have the results been?

Has the nephrologist discussed his long and short term plan with you?

Were foods to be avoided and possible side effects discussed with you when the prescription was initially administered?

How about diet and monitoring salt, protein, potassium and phosphorous?

Although the directions from the company may help, they don't always give you plain information. Check on Drugs.com about side effects etc. Your pharmacist should be another good resource about the drug.

If labs are ordered prior to the appointment, print copies out from the patient portal and check off any areas that flag or areas where you have questions.

List questions and note answers and plans discussed.

When taking strong immunosuppresent drugs these are all key factors.

I know as I have Membraneous Neuropathy which is in the same family as fsgs. I was given 1.5 mg of Tacrolimus twice per day for 4 months.

It brought my protein spilling down from 4.5 to 1.5. I went for labs and urine every 7-10 days. I was also tested for toxicity.

I had no outward side effects but my blood work was a mess.

I was not satisfied with the care and follow up and sought a second option who saw my labs and took me off the drug. Yes it worked but at what expense? My CBC is normal.

Asking questions and being heard is key - advocating for the best care.

Remember that every person is different and responds differently to medications and medication doses.

After seeing the present doctor and discussing your concerns, if you feel that you both are not being heard, give some thought about getting another opinion.

I know it is not easy.

Please feel free to reach out and let me know how both you and your husband are doing. This is all a process and you will get there.

Stay strong! You are not alone.

Bet

[Bassetmommer NKF Ambassador]

Hi will,

As Bet said you need to work this out with your doctor to get some answers. I know it is hard to see someone struggle like he is. But you also might have to face that his new normal is not what your used to.

There are things that you as a family can do like change up his diet. Talking with a renal dietician would be beneficial.

Also, and this is important, celebrate the good things. Being able to walk for 10 minutes is a victory and might be all he can do for now. But that is not non-functional. I sometimes can walk more than five minutes when my arthritis is flaring. But the last thing I need is guilt.

I hope your husband has filled either for FMLA and maybe start the process of disability insurance.

No one can promise a silver lining, sorry. But there is plenty you can do to make every day a good one.

[WYOAnne NKF Ambassador]

Yes, like the previous posts, you need to inform your doctor how your husband is doing. They can't help him if they don't know the side effects he is experiencing. It could be some effects from the prednisone and the cyclosporine. I also have FSGS and have had a transplant. However, my transplant was 20 years ago. I take Neoral (cyclosporine) 75 mg twice a day as one of my immunosuppressants post transplant. It took awhile to be on the right dose. Some of the side effects you mentioned are also what I experienced when my dose was higher. Does he still take 90 mg of prednisone? That is a high dose.. You really need to talk to his doctor and get this all worked out.

Best of luck

[Willitgetbetter in reply to WYOAnne]

Thank-you so much for all your responses. We have already pursued all the advice thats been suggested....that's why I am now reaching out to better understand what the norms really are....The doctors are aware of how debilitated my husband feels. The responses we get are that it is all related to the medications. What I want to know is if his experiences are the expected norm. His GFR hovers in the 50s. His alb/creat ratio is 378. He is down to 5mg prednisone now. We are vigilant with his diet (less than 1000mg sodium per day, low protein, low sugar/carbs as he is now diabetic from medications), less than 1.5 litres liquid intake. We have done all the right things from the day he was diagnosed (except adequate exercise, because he is soooo tired and sore all the time). Now we have discovered his TSH levels are low, so we are hoping the addition of synthroid might help. I just wanted to know if people with nephrotic- type syndromes, living on Cyclosporin, are able to feel ok, go to work, exercise, participate in daily life, or if we need to adjust our expectations considerably. Our nephrologist is a chemist at heart, and relates everything to balancing the meds. I have already inquired about second opinions, but have been told we are in good hands....just need it spelled out...will he ever feel better??

[jaibo in reply to Willitgetbetter]

I have FSGS too, at first I was medication with 50mg of Predisone a day and Mycophenolate Mofetill 500mg every 12 hours my labs are getting better every month, at the beginning my foots was swelling for 3 months and feels tired all time now Im at 5mg of Predisone, the same amount of Mycophenolate,and I'm totally functional, I exercise every day, take my medication, and follow the direction my nephrolog nutritionist gave me. I hope your husband feels better soon and he respond to the treatment. Sorry for my English Im Mexican.

[WYOAnne NKF Ambassador]

I don't think anyone can really answer that question "...Will he ever feel better??". Even though I have FSGS, I have had a transplant. Pre-transplant I was put on cyclosporine also, but never remembering having issues with living my life. I know I was tired all of the time and was nauseated. Was that due to CKD or to the drug, or both? I think we are all different and so are our experiences. I would just advise you to continue to work with his doctor. Maybe things will get better. I would keep in the back of my mind, getting a 2nd opinion. Maybe another doctor could make some suggestions that would help?

How was he feeling before starting the cyclosporine? Is it the drug?

Keep us posted.