hey everyone, I am new to this group, and this online community. i was diagnosed with FSGS (focal segmental Glomerulosclerosis) back in Febuary of 2018, and have been taking medications daily ever since. just recently, my doctor moved it from just a kidney disorder to Stage 2 CKD due to low hemogoblin and GFR.
I have been experiencing a lot of Cramps/charlie horses all over my body since i started taking a new medication called mycophenollate. i wanted to know who else out there, if any, have the same disease as i and what can i do to control the Cramping??
anything will help, and its nice to see all the posts and replys on this group! i am glad to be a part of this and i hope to get some answers to questions from people who have experienced it.
Thanks again!
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You have come to a great community of caring, supportive and informed people.
I don't have fsgs but I have Membraneous Nephropathy which is in the same family.
It is a process and a journey.
The medication that your nephrologist has you on is an immunosuppresent - probably to reduce protein spilling.
Has your doctor laid out a plan for you including the time constraint that you will be on this medication and sending you for toxicity checks every few weeks?
I do know that duel purpose immunosuppresents drugs as this one, which is also used with transplant patients can alter your CBC results as well as hemogoblin and hematocrit levels as you take them.
Just bear in mind that every patient is different and responds differently to medications.
I would give your doctor a call and let him/ her know that you are experiencing cramping and ask what is recommended to make you more comfortable. Additionally, I would mention your concerns about your hematologic panel and have them explained to you.
I visit my nephrologist every month, and i am getting my blood work done weekly now. since he has placed me on the mycophenellate, he has not discussed how long he plans on keeping me on this medication. this will be the third treatment plan we have tried. first it was a high dose of Prednisone, and when that failed, we started to use Cyclosporin. I was on Cyclosporin for almost 6-8 months, then my body just started rejecting it, so now we are on this treatment plan.
I found it frustrating at times when he kept changing them, because it felt like he was just playing a guessing game, but i am sure that has happen to a lot of pateients.
And i am going to see my doctor today, and i am hoping he can send me to a dietitian! i have been reading a lot on this group on how changing your diet can and will help!
thank you again, and i will let you know what i find out later today!
No thanks ever needed! Unfortunately fsgs and other such disorders often require a number of trials and error to find the best combination of medications which yield the most successful treatment. It is not you!
One of my close friends was diagnosed with Minimal Change disorder in 2015. She was initially treated with prednisone, Lisinopril and Lassix as her edema was awful. She was eventually found to be steroid resistant and it was removed.
The nephrologist then tried her on 3 rounds of Rituximab which wasn't effective, then the Cyclosporine which you know the side effects. It did lower the protein spilling but lost its power. They then tried Cyclosphomoriphide ( I am sure that I am mis-spelling it) which got her into partial remission.
Like you, she had weekly to bi-weekly labs to monitor her. Annoying but at least you know what is going on. Very frustrating and a journey to get there.
Being in the UK, the health system is different and she was not offered a dietician. I am not sure how conscientious she was about her diet, but I do know that her PCP checked and told her to watch the protein and dairy.
I saw her through an awful time!
So be patient and communicate.
If you are not feeling well and experencing symptoms, please call your doctor and let her guide you as you are on several heavy duty chemo medications. You are paying her to care for you; let her.
Lots of deep breaths and team work. It will eventually come together.
Cramping in CKD is common and can be due to electrolyte imbalances. It's possible you're deficient in potassium and/or magnesium, but discuss with your doctor first if you should take any supplements. Your labs should tell you where things are at and your doctor will know what to order. At that point you can adjust your diet, but don't take any supplements unless prescribed by your doctor. When I was first diagnosed with CKD I had low potassium and had to take potassium supplements for a while to correct the imbalance. Your body wants potassium to be in a certain range and healthy kidneys do what they can to keep it in that range, but you have to eat foods containing potassium to get enough (usually about 4.6 grams/day). When a person's CKD gets advanced (stage 4 or 5), then one usually has to restrict potassium in their diet so that their potassium doesn't get too high (which can be dangerous). This is because when the kidney function becomes severely impaired it doesn't do a good job of removing excess potassium from the blood stream. When potassium becomes too high in the blood stream, it can cause your heart to stop.
i have a feeling that is not the potassium due to the doctor calling me in the past to make sure i am on a potassium free diet due to my levels being so high. little did i know that eating healthy and eating salads and a lot of fresh fruit could make your protein levels sky rocket!
i will definitely check out the magnesium though. and also, i had no clue that cramping and CKD were linked. that is a good thing to know!
Some foods contain more potassium than others. High potassium foods are tomatoes, potatoes, avocados, orange, bananas, mangos, melons, and a few others.
Everyone has given you great advice. The most important thing is to let your doctor know about your cramping. I am on mycophenolate as one of my immunosuppressants I take twice daily due to my kidney transplant. When I first started it, I had to have blood levels drawn to make sure the dose of the drugs was not too high. He probably has you on a low dose.
I also have FSGS. I was diagnosed in 1992. Back then I don't think they knew that changing your diet could help. I was just told no added salt, no processed foods and drink plenty of water. You should see about getting a referral to see a renal dietician. Many on this site have had great success with stabilizing their CKD with a kidney friendly renal diet. A renal dietician could help you plan your new food plan. I think it would be interesting to see if you changed your diet now, at Stage 2, if you could prevent progression of FSGS!
I was put on the transplant list in 1998 and had my transplant in 1999. I just celebrated my 20 year transplant anniversary!
hey!!! thank you so much for your response! I am so exicted that i have finally found another person with FSGS! (i have been searching for a while)
I am taking it twice daily as well, and would be curious to see what amounts we are taking! i do go for lab work weekly right now, and i see my doctor monthly. i am going to see him this afternoon and plan on asking him for a referral to a renal dietitian. I tried changing my diet without the help of a dietitian, and i got a call from the doctor saying my potassium level was dangerously high.
i will let you know the outcome of todays appointment.
I have FSGS and have had my brothers kidney for 32 years.my FSGS was confirmed by biopsy. Nothing stopped it’s progression. Three years after diagnosis I had the transplant. I have been on Sandimmune the whole time.
Hi, I have FSGS (tip variant) - diagnosed 2016, like you I started off with 13 meds that ‘knocked me for six’ for quite a while and lots of side effects, (it was the statins that gave me cramps) we were starting to talk about dialysis and transplants but the meds started to work. 5 years into it now and down to one med, just the immunosuppressive and living life normally again.
I’m just saying this as a positive, I found the early days very scary but the outcomes can improve and I hope they do for you.
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