Immunosuppressant side effects

[Rockefeller20]

Hello all

Haven’t posted or been on the site for quite a while.

I like to know has anybody experienced Havs,Raynaud’s disease and been told they are a possible side effect of medication their taking

I’m eighteen months post tp and work with vibratory machinery like jackhammers Stihl saws drills and that sought of thing

So I’ve been restricted in using these in work and got told that the white fingers and pain when cold could be coming from my medication and not the vibration from the tools I use.

However this came from my work doctor and I’m not casting aspersions but his loyalty’s lie with the company, so are they passing the book or maybe they’ve got some and is my meds

Just wondering if anyone has experienced anything similar.

[AyrshireK]

Hi Rockefeller, congratulations on your successful transplant. Which immune suppressant are you on?

I know WIKI isn't probably the most reliable source of information in the world but it suggest that cyclosporin can contribute to Raynaud Syndrome. Obviously, working with the vibration inducing tools can also be a major cause.

en.wikipedia.org/wiki/Rayna...

Guidance from your transplant team should perhaps be sought.

Katie

[Rockefeller20 in reply to AyrshireK]

Hi and thank you

I’m take two 500 microphenolate and on 8 miligram of tacrolimus a day which after being eighteen months post transplant am wondering if it’s too high as I’ve a slight issue with my kidneys which is also a side effect from my meds but my consultant is aware of.

But with the cancellation of appointments because of covid19 and my next being in October is a bit of concern.

[AyrshireK in reply to Rockefeller20]

Give your team a ring, they should be able to discuss this over the telephone or arrange to see you sooner.

Katie

[Kristian]

Hi Rockefeller,

I can see where your coming from here and suspicion of vibration white finger seems very plausible. I'd probably say more plausible than side effects of your immune suppression.

Unfortunately its probably going to be one of those things you are going to have to help rule out with the help of your medical team. If you can't get to see your liver specialist then even a chat with your go may be helpful.

Good luck

[exy21]

I have Raynauds but it isn't the immune suppresants I take as had it before diagnosed. Have a few autoimmune problems. Aih/pbc sjogrens and crest( raynauds-the R)

[raqs67]

Hi, I'm 3 yrs post tx now and my raynauds is getting worse all the time. I'm even suffering when holding cold food like a sandwich. It's so bad I'm considering buying a car with heated steering wheel. It affects my feet as well, walking in winter is really problematic. I also have arthralgia in my feet and can't walk far before getting pain. It's changed my life totally. Good luck😊

[Hidden]

Hi,

We would suggest that you could consider calling your transplant team to fully discus your concerns. Keep us posted.

[Robbie21]

My husband was transplanted last nov. He's on Tac and MMF. He's developed symptoms similar to raynards. It's just intermittent, but wasn't an issue till recently.

Let us know how you get on.

[1football]

Hi

I to work with vibrating air tools am ok regards Havs but what am looking at is exactly what 2 painters have where I work and they’ve been diagnosed with white finger, I would go and ask your GP his thoughts,I have a lot of small lumps appearing on my fingers which my team said are warts due to tac so being referred to dermatology