User Reviews for Cyclosporine

The blister card packaging is difficult to open, even with a scissor. I take three capsules a day of this medication. The total count for total pills/capsules for me is 16 a day (including the cyclosporine). I'm on these meds for life, can you make it just a little easier?

I take 150mg cyclosporine modified twice a day am/pm for my second flare of minimal change disease following two rounds of Covid and two Covid vaccinations in 2022. I was steroid resistant to my first flare several years ago so my doctor wanted to try this. The medicine smells like strong weed or skunk. It’s extremely hard to remove from packaging. It is extremely expensive! The main side effects for me are daily dull headaches, tiredness (I can easily sleep 10-12 hours a day) nausea, diarrhea (diarrhea for the first 2-3 weeks) and increased hair growth. I am not growing excess hair necessarily, but it grows faster. I now have minor acne on face, scalp and arms. I also have a burning sensation in my fingers and toes. Like when you are in freezing temperatures and then you wash your hands in warm water. The warm water feels very hot, but it’s actually not. If that makes sense? I also have aches in my arms and legs. I always feel like I just ran a marathon. I have been on it for almost five months and my proteinuria has declined to almost within normal range. Hopefully, I will be in remission soon so I can start tapering off. The side effects for me haven’t been horrible, but not great. I still wouldn’t wish this drug on anyone. Having been on high doses of cyclosporine long term as well as high doses of prednisone long term, it’s hard to say which had worse side effects. They are both equally bad, but very different. Hopefully there will be better alternatives some day. Minimal Change Disease is an immune system kidney disorder and I am always afraid of getting sick on this medication because it’s like a double edged sword and I could end up with another flare or worse.Read More Read Less

I get terrible abdominal pain, nausea, and diarrhea from taking Cyclosporine so far. The smell of the pill is terrible and I cannot sleep from the terrible abdominal pain and nausea I get.

The smell is terrible. Hold my breath to take it fine considered the alternative. I have taken it for two weeks and I have more tear drop spots, my spots have tripped. The upset stomach is bad and not able to sleep. I have gained weight so it's not working. Wish there was a better treatment the side effects are terrible.

I had a bone marrow transplant in 2012 and have been in cyclosporine ever since. I managed to get off it in 2014 but I now suffer from chronic GVHD and have been taking it again. Even ten years later I still block my nose when I open the foil pack, it smells like really strong weed and onion grass pretty gross. I hope people know that only the person taking cyclosporine can touch it? It’s actually dangerous for non immune suppressed people to touch it, as it can affect their immune system just by handling it. At one stage I had GVHD in my mouth and had to take the oral liquid. YOU DO NOT WANT TO TAKE THE ORAL LIQUID it is the most thick bitter burning solution that heats up in your mouth and the taste what could only be described as satans armpit. I couldn’t wait to get back on tablets. Overall apart from a few minor dislikes, cyclosporine has helped me so much and I’d be much worse off without it. Only side effects I get are being unable to touch cold things because my hands burn abd sone joint restriction but I’m probably on a higher dose that most. I also can’t take prednisone because it caused A vascular necrosis in my bones so cyclosporine has been my only friend in my skin recovery. It sucks, yes but I’m so grateful for it when so many around the world don’t have access to it. And let’s be honest most of us would be worse off without it. There are so many medical issues that can’t be fixed with medicine so thankfully this one works. Read More Read Less

Taking this medication for my Eczema - did not work at all and when I stopped taking it all my hair fell out = completely bald.

I started taking this for chronic hives when nothing else worked. First excessive hair growth mostly on head, but then after a few months it started falling out. Seems to have tapered off. Drug works for hives, but I have been on and off of it for 4 years. Now have some kidney damage and don't want to take it any longer. But hives are back with a vengeance. Next drug may be plaquenil. No free lunch. All these drugs have side effects, but I cannot live any quality of life with hives all over my body.Read More Read Less

This drug was the only one able to control my chronic hives but now I have multiple infections, stomach upset and hair loss. When I asked the doctor about the hair loss he told me it must be stress. If stress caused hair loss I would already be bald. I have also noticed dark hair growing on my face and a beard is not cute on a female. I am seriously ready to stop using this medicine. It is nasty. I read an article about an asthma drug that helps people with chronic hives without the side effects. I think a study was supposed to be published in a dermatology magazine in July 2014. It is a shot but I still think it would be better than this drug.Read More Read Less

25 years post transplant and counting. No problems other than age related.

Cyclosporine is brutal. I have grown excess black hair on my face, arms, legs, etc. My gums are so swollen and sore. I am extremely tired and weak. It has done its job by keeping my immune system depressed. I take it for Severe Aplastic Anemia. I don't know how long I will have to continue taking it, but hope it is not forever. It does taste bad, but I take it with crangrape juice and that helps. I am afraid of what it is doing to my organs.

I had severe psoriasis 95 percent covered, been on it for 3 months. Most of it has gone away. I am now reduced to smaller quantity. Side effects are minimal compared to the others who posted comments. Fatigue, some hair loss, higher blood pressure. I hope I can go off this soon. I hope the condition won't back.

I received this drug for a cornea graft, amongst other medicines (steroids etc) and unfortunately it didn't work. 4 Grafts and no luck. I found it not hard to use but got sick often and found the nausea was frequently bad.

Have ben taking this medication for a month for a kidney condition and have had multiple side effects including body weakness, insomnia,inability to remain focused, jitteriness,muscle cramping, flatuence,indigestion,intermittent memory loss. Hope I will not have to stay on it much longer.

After 3 weeks, my skin cleared up completely after suffering from eczema for most of my life. Unfortunately, I got a boil on my chest area which after noticing it foe 1 day, it caused nausea and I ended up in the ER w/ an infection and was required to discontinue use.

Cold sores, fatigue and inability to sleep and get enough rest. I have stage 4 kidney disease.

Interestingly I only found one other post where someone was taking cyclosporin for aplastic anemia which is what I have. My white count started at 2 when I was diagnosed. I am now up to 81. But have had many platelet transfusions. I have been taking this for about 2 years. I went through the ATG and had 2 heart attacks while in the hospital. They put a stent in my heart. I am home now but the side effects are brutal! Growing dark hair everywhere. However, the hair on my head is thining. Fatigue, confusion, eyesight and hearing problems. Muscle aches...I could go on and on...How long can a person take this stuff? My oncologist tried to wean me off but had to put me back on. Oh yes, I almost forgot (haha) I also now have two confirmed leisions of skin cancer on my face. Plus I need to have a liter of saline every day because this is damaging my kidney function.Read More Read Less

right now the only thing bothering me is the smell...it smells like weed!an when I take it I have to hold my breath.

I was prescribed med when other meds failed to stop Autoimmune urticaria. It worked within days of starting by stopping hives. Unfortunately, taking it has made me feel miserable otherwise. I have been very tired, my blood pressure has risen considerably, aching in my joints, flushing skin, swollen and tingling hands, and unable to sleep. In the process of weaning off it and hope that hives stay in remission so that I do not have to take this medicine again.

I'm taking cyclosporine for Sjogrens Syndrome and intercystital cystits. It has made a big difference in the dryness I have to deal with and with my bladder issues. I did develop high blood pressure, but its well worth me taking another med. The dryness was horrible before. My eyes were really dry and had very little saliva production.

Tiredness is unrelenting, mental slowness as well