Those of you who are in remission...

I've tapered off of prednisone about a month and a week ago... My urine still reads negative to trace range in the dipstick but whenever I've worked too much or stressed my body out, sometimes I get a 1+ but then it goes back down to the negative/trace range again.
The question is that my legs still swell.. especially in the calf and ankle areas..and I don't know why.
After sitting in a class during lecture or walking makes my legs really tight and heavy. and there are constant cramps in the legs.
Why am I still swelling??
and I think I'm retaining a little bit of water also in the abdomens because after I eat some food my stomach feels so bloated.
I don't know if I'm still getting rid of the leftover side effects from prednisone..or what? I don't know.
My neph prescribed me lasix with potassium pills...lasix DOES seem to help but just partially or momentarily.
Whenever I'm in a squatting position or kneeling down my legs really hurt. When in those positions, they feel like they're about to burst open due to pressure.
I'm not taking prednisone and in remission but I don't know why there's still swelling in the legs...

By ChiCubs7
Posted April 23, 2008 at 5:45 pm

Might want to ask your doctor.

I've been off cyclosporine for a week and two days and haven't noticed any swelling. I don't check my urine for protein though, so I don't know if I'm spilling any or not. However, I have no edema, so if I am spilling, it's not very much.

By vanessakb
Posted April 23, 2008 at 9:42 pm

I know when I was slowly taken off the prednisone, my body HURT. Especially, once I was finally done. It is amazing what that stuff does for your joints. It would hurt to get out of bed, in and out of the car, my hip was hurting. No offense, but I felt like an old person, and I'm only 28. But after about a month or so, I felt better, sometimes my hip still bugs me but for the most part it is good...Congrats on your remission. I'm a big believer in the protein levels flucating with stress. I believe this is one of the contributing factors to MCD.

Good luck

By Aweson-son
Posted April 23, 2008 at 11:19 pm

I am THERE. I just got off the prednisone two weeks ago and I hurt every day. My hips kill me and I am sore all over. I don't seem to have swelling, and I don't test my urine on my own at all. I do know when I get stressed it does get worse. The lasix only work temporarily because you have to keep taking them. The problem is if you take them at night you will have to get up a million times! Been there done that. I had gained 50 pounds in swelling when I was first diagnosed. I could barely move! not sure if I answered your questions, but I hope it helped. I know for me it's good to hear that other people feel my pain (even though I don't really wish that on anyone) Last time I relapsed in two weeks, so I hope I can make it a little longer this time!

By jkemker2
Posted April 24, 2008 at 9:37 am

Have you checked your blood pressure, etc? I have been caring for my 12 yo daughter who was dx'd with steroid depend. MC-NS at the age of 2. She has been on every drug imaginable , yet we still battle this disease. I think you have to really keep heart healthy with NS. I would check with your Dr. again and if you still feel something just isn't right, get a second opinion. I hope you feel better quickly.

By srhudge
Posted April 24, 2008 at 9:39 am

I have been tapering off prednisone for the last several months and am down to 10 mg a day and on 200 mg of cyclosporine a day. My nephrologist is really baffled as to why I am still swelling. My protein level is the lowest it has been in two years. When he dropped me to 30 mg of prednisone I felt worse than I did on the 70! I hurt all over, my hips kill me most of the time, I can barely walk sometimes ane especially when the swelling is the worst. I am on Lasix 80 mg a day and now on Zaroxylyn 2.5 mg too. I'm going to the bathroom more but so far can't really tell the swelling has gone down much. I have back problems so am unable to lay down in the bed to get my feet elevated...it's just not the same in a recliner. I'm hopeful that this new medication regimen will take the fluid off and I can get back to some semblance of normal. I'm really nervous because every time he has dropped me down to 10 mg of prednisone I have relapsed. I'm praying this time will be different.

By Boussaar
Posted May 7, 2008 at 10:50 pm

I am in remission but I am still on 10 mg of prednisone. I do not have any swelling and do not take any lasix or other fluid meds. Swelling is caused by the kidneys pulling protein from the blood. I am on a very strict diet and have to limit potassium. No tomatoes, potatoes, nuts organges, etc. I was swelling a little until my prednisone was cut to 20 mg and after that no swelling. I lost 50 lbs of fluid the first month out of the hospital so I was really retaining fluid, adding about 9 lbs per week but my kidneys shut down. I cannot understand why you are still swelling and why your neph would give you potassium. Before treatment, I had cramps so badly that the pain was unbearable but no cramps now.
My neph says my kidneys are 100% now.

By Jenny1
Posted May 8, 2008 at 12:14 pm

I also find it odd that your neph gave you potassium. I've always been warned against eating things that are high in potassium, much less potassium pills. Anyways, I'm not and never have been in remission - was resistant to prednisone - but my protein levels are generally pretty low, and I still have quite a bit of swelling in the calves and recently ankles and feet. I know it's supposed to be related to the protein spillage, but I don't notice any changes when the protein increases or decreases. When I notice changes it's usually due to my diet - eating too much salt. Not sure what kind of diet you are on, if any, but maybe reducing the salt intake will help? Or maybe reducing your intake of fluids? And if you can spend some time with your feet elevated, that helps some too. Just some things that help me out. I do feel your pain with the swelling. It is definitely not a fun thing to have to deal with and it's even harder when the people around you just don't understand what your going through and how painful it really can be. Good luck!

By Jackie02
Posted May 14, 2008 at 11:28 am

Hi i have had 2 relapes and treated with steriods starting at 60mg then tappered donw till none first relapes after only 9weeks 2d time doc kept me on for longer and i still relaped after 14 weeks. I have just finished a new drug called cyclophamide normally treated in cancer patients, Been off 3 weeks still get sore joints and tire easy but im hoping it keeps it at bay for longer like doc hopes. maybe you can ask your doc about this drug not as bad side affects as steriods so far any way good luck im from scotland. psdn l

By mom23boys
Posted June 11, 2008 at 10:15 am

Did you ever stop swelling? Are you still in remission? Did your doctor think it was from the prednisonestill. I am off prednisone for 10 days and I feel like I am swelling a bit in the legs and my abdomen and my face. I took my old lasix dose yesterday just to see what I would put out and I put out almost 6000cc's of urine. I went for blood work and urine at 8:30 this am. I have either relapsed or maybe it is my adrenals. Any ideas?

By smhong86
Posted June 11, 2008 at 10:30 pm

I am still in remission..
I still swell from time to time but it's gotten much better than before where I was so swollen in the legs all the time that they actually hurt when I squat down or been sitting for a long time.
I started to take aloe vera gel pills AND aloe vera juice also, addition of omega-3 fatty acid. I don't know if these helped me get better but I do feel certainly better. I now get a negative on the dipstick instead getting a trace or a +1 like before..
I do take lasix still whenever I cheat with some salty food but still, they don't swell as bad as before even after eating salty food.
I think your symptoms show 50/50 chance of relapse. hmm. Maybe not 50/50 but more possibility on still in remission. because I still had the fat face, fat abdomen, legs at 10mg.
I'm still working really hard at losing all the prednisone weight. I gained about 15lb!! It's really hard.
My doctor's a douchebag. I don't really believe what he says anymore... He just thinks putting me on a massive dose of prednisone for a long time will heal me.
Hope your test comes out good...Good luck!

By mom23boys
Posted June 12, 2008 at 6:59 am

Thanks for the reply. I have no frothiness in my urine so I am betting that the retaining of water is because my kidneys or whatever got used to diuretics. Until I stopped I was on 80mg every am and 40 mg every pm. I will get results today.
I also started the Fish oil pills. I have the whole leaf aloe vera juice in my refrig but I have been nervous to take it. I am glad you are in remission still. It gives me hope. I truly believe MCD is caused by Ibuprofen use as kids get it after illness(when peds. tell moms to give motrin for fevers). I think I will have the extra weight for a wwhile but I can live with that. I just want to be done with kidney disease! I have been off prednisone for 13 days

By mom23boys
Posted June 12, 2008 at 8:15 am

I did not eat salt the last two days and limited my fluid intake somewhat and am 5 lbs less on the scale than Tuesday. I guess the salt is making the difference. I guess my adrenals may not be regulating my sodium/water retention correctly. That is just a guess. Of course I might just have relapsed. No swelling at all in my feet. I notice all the current swelling is in places that got puffy after the prednisone kicked in ie: chin, belly flanks and my upper back like under my armpits and backwards(if thhey were muscles I would call them lats) Just observations.

By mom23boys
Posted June 15, 2008 at 2:48 pm

As per the doc all blood and urine results are okay. I will ask for a copy. I guess iam in remission. Started on lemon water today. We shall see.

By smhong86
Posted June 15, 2008 at 9:29 pm

That is wonderful that you're in remission.
yeah, I still swell despite urine dip stick reading at negative. I do not know why. Maybe I'll be like this for the rest of my life....I can't eat normal food like everyone else. I always feel heavy in the legs all the time since about last winter.
I wish this swelling would go away. Lasix seems to help just a little bit. I've tried everything too, even eating raw lemons..
I've decided to just eat like everyone else but keeping the diet a little less of sodium compared to normal people. It doesn't seem like I relapse because of sodium and I swell even without sodium intake sometimes ...so I'm just like what's the point...I've relapsed multiple times even with sodium-free diet..
I think I'm much happier with just normal food like everyone else eat...not stressing about relapse and swelling...

By fsgsblahs
Posted June 17, 2008 at 8:15 am

Prednisone is famous for causing the joint cartilage to break down, causing a lot of pain. It also can cause a lot of other organ problems, as well as type II diabetes. The hips usually take the biggest hit and I have known someone who had to have double hip replacements at age 26 because of it.

Have you had any type of high cholesterol or tryglicerides? If so, you may want to ask the docs to check for vascular problems in your legs. People with kidney problems are much more suseptible of that as well. I have severe peripheral vascular disease and have tons of leg pain, especially bending over and such. Because I have a bad back, it took me several years (5 to be exact) to actually be diagnosed correctly. If you have had any of the lipid problems or if it continues, I would ask your doc if they would send you for a PVD ultrasound w/ doppler. This allows them to check the blood flow from your hips to your toes and it doesn't take very long at all. Vascualr problems can also cause swelling in the legs along with cramping.

Just a thought! :-) It never hurts to rule something out.

By smhong86
Posted June 17, 2008 at 10:23 pm

That kinda sounds somewhat true
I DO have high cholesterol b/c of MCD.
I don't know if the level went down since my last testing..
Maybe that might be the reason for all the swelling and cramping..
I'll check that out with my doctor. Thanks!

By fsgsblahs
Posted June 18, 2008 at 5:35 am

First of all, there are other factors that can lead to Peripheral Artery Disease / Peripheral Vascular Disease....smoking, diabetes, high BP, hereditary, and high lipids. I have 4/5...lucky me. My father also had an Aortic Aneurysm...which is also a reason to get checked....I would ask around your family about that. My vascular surgeon was in complete shock, as he said that he has never seen anyone in their 30's with it.

There are treatments depending on the severity. They normally start conservatively at first, unless you already have a blocked artery. It starts with lowering the above mentioned causes with medication or whatever means necessary. If it continues to get worse, they can go into the femoral artery and place a stent, or if that is not an option, they will have to do an open bypass surgery. Here is a link for more information and you can also Google 'Peripheral Artery Disease' to look at other sites...this one is from Mayo Clinic.

http://www.mayoclinic.com/health/peripheral-arterial-disease/DS00537/DSECTI ON=2

Let us know what you find out! Good luck!

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