tacrolimus

[SF1000]

happy New Year everyone! I am about to start tacrolimus and was wondering if anyone had any experience of using this drug. Were there any side effects? Did it help?

Any reassurance would be gratefully welcomed x

[CPower]

Hi, I was put on tacrolimus alongside prednisolone, hydroxy, and mycophenolate. I've now stopped the pred and myco and am still on tacrolimus until I can change it to another medication, as I couldn't tolerate the mycophenolate anymore.

When I first started the dose was low and they higher it slowly. My first increase came with hand tremors, and really bad cramps in my hands and calves, like seizures. This could have been exaggerated by the high dose of steroids I was on, as I was trying to calm down lupus nephritis as quickly as possible at the time, but it was not fun!

The tremors don't hurt but can make your hands feel weak and certain things are difficult to do as you're so shaky. This disappeared after a couple of months and I just stopped noticing it.

The cramps made it difficult to go out, as I was worried my legs would seize and a few times I found myself crouched on the floor waiting for it to go away. It took the strength out of my hands too and I had to massage the cramps away, if it didn't happen in both at the same time (usually triggered by trying to use my hand - eating, doing laces, writing, cooking). Again, I'll stress this was probably also caused by the high steroid dose. I started taking magnesium, and found that coconut water helped settle the pain and tiredness felt in my muscles afterwards.

My dose hasn't been steady and only recently has it been high enough to be classed as therapeutic. I don't get any side effects anymore, and I've messed with the dosage as I was trying to figure out if it was causing GI symptoms (that was the mycophenolate unfortunately). This was all with the help and advice from my rheumatologist and specialist nurse!

They told me this was a mid-term solution and hope for me to stop after being on it for 12 months. They've assured me it must be helping as my flares aren't so bad, and I got into remission from the nephritis in less than 10 months!

I also haven't fell more ill than usual, as I know that's a risk, but just be careful and I advice getting the pneumococcal and flu vaccines

I hope you're feeling okay and you tolerate tacrolimus well! It was unusual for me to get the severe cramping, as well as taking a while to reach the therapeutic dose, so I hope your case is different and more streamlined. I now take 2.5mg in the morning and again at night.

Happy New Year x

[SF1000 in reply to CPower]

Thanks so much for your reply.

I can sympathise with the GI problems on mycophenolate. That was a problem for me too but I only ended up stopping it after having a tachycardia which was really scary.

The cramps don’t sound nice but I’m glad to hear it all settled down.

The other option I was given is leflunomide which doesn’t sound very tolerable either.

Good luck for this new year.

Thanks again x

[CPower in reply to SF1000]

I can imagine with the tachycardia, I also had heart palpitations a lot but never ended up doing anything to treat them. They settled when I insisted on stopping as many of the meds I was on as possible over time!

I haven't read much on leflunomide as they want to try me with azathioprine but this forum is a good place to read what other people have gone through. Good luck to you too x

[SF1000 in reply to CPower]

Thanks 🙏

[Bond12]

Hi I have had a severe outbreak of mucosal/cutaneous lupus. Severe red raised rash on face, bleeding ears, bleeding ulcers on my lips for over a year. Then the large ulcers broke out in my mouth, very painful and distressing. Dermatology passed me on to oral surgery at a top hospital. Tacrolimus .25mg in 5ml mouthwash three times daily was their prescription. For the first month there seemed no effect. But after 6 weeks the healing process has begun, skin growing over the ulcers. I saw the oral surgeons during the week and they are happy with the progress, follow up in two months. For me tacrolimus is wonderfull. No side affects just use three times a day. Mucosal lupus is very rare, my surgeon had not seen it in person, just in medical literature. A medical photographer took photos for training purposes. The lupus on my face, lips and mouth made me very depressed, really dejected and hopeless. But the treatment has worked. Hopefully the tacrolimus will work got you too. Don't give up hope just be patient. My greatest sympathy to you.

[SF1000 in reply to Bond12]

Gosh Bond 12 that sounds awful. It’s no wonder you were depressed having such horrible and visible symptoms. I’m really glad it’s starting to settle and hope you get even more improvement very soon

. It’s good to know you’ve had no side effects of tacrolimus but I wonder if much is absorbed into your system if it’s a mouthwash preparation?

I suppose I’m worried most about having another episode of tachycardia on a new drug but I need to do something!

Good luck x

[Bond12 in reply to SF1000]

Hi thanks for your kind thoughts. I did wonder how a mouthwash would be absorbed into the system via the mouth. But in France most drugs are prescribed as suppositories, so I suppose we are conditioned to taking drugs orally being absorbed into the gut. As mentioned no side effects. I was treated for a series of heart attacks in early October but unconnected. Gunge from lupus ie dead tissue, cells etc had built up over 30 years causing a vein to burst. Fortunately cardio surgeons were able to drain gunge and put a stent in. I was able to watch the highlights on a large screen afterwards! They did say there was a slight weakness, but I feel good. But behind the lupus and APS I believe is psychological trauma. I have a diagnosis of CPSTD and have begun trauma therapy. There is a lot of medical literature regarding early years trauma and autoimmune disease. I suppose what I'm trying to articulate is don't neglect your mental health because the body keeps the score. I don't imagine lupus will go just maybe damp down. Lupus is such a nuisance as it crops up everywhere. Best wishes, thanks for your comment. This is the first time I have ever posted online, must try some paragraphs next time!

[SF1000 in reply to Bond12]

You have really been through the mill! I’m glad things are starting to settle.

I agree the relationship between trauma and autoimmune disease is interesting and hopefully more research will be done into this connection.

Thanks for your contributions and best wishes for the future.

[Bond12 in reply to SF1000]

Cheers, wish you well with your lupus journey.

[NewEngland3]

on it-2mg bid for nephritis-lupus class 5-membranous nephropathy, it was added as mmf wasn't helping. I dont have any side effects to it, unlike mmf that gave me insomnia and GI issues. good luck!

[SF1000 in reply to NewEngland3]

That’s good to know thank you. X

[IMWilson]

I have been on Tacrolimus for about 16 years now along with MMF and various other meds. I take 2mg in the morning and 1.5mg in the evening with no problems at all. I have my Tacrolimus levels checked every 3 months via a blood test.

[SF1000 in reply to IMWilson]

That’s really good to hear - thank you!

[Sashappy]

I've been using for nearly 2 years without any problems.