Mycophenolate infection

[Ajackson10]

Hi - my mum is taking mycophenolate for systemic sclerosis and pulmonary fibrosis. She has been taking a small dose for about 3 months. She has caught some bug which has gone onto her chest and she has a really bad throat can barely talk. When prescribing mycophenolate rheumatology said she needed to contact them immediately if ever unwell on it. Unsurprisingly she can only get through to a receptionist and no one will speak to her until next week! She has amoxcyline but it says online not to take with the mycophenolate. Does anyone know what type of antibiotics can be taken alongside mycophenolate?

Thanks in advance for any advice.

Alex

[CarolMcl]

Hi, sorry to hear about your mum. When on immunosuppressants, the advice you're always given is to contact either the rheumatology department or your GP if you have an infection. The only time my medication was stopped was when I was admitted again to hospital after a VATS procedure. If your having trouble accessing your GP/hospital I would advise contacting your pharmacist, they're usually very good at giving advice. Hope your mum feels better soon 🌹

[Ajackson10 in reply to CarolMcl]

Thanks so much for the advice Carol ❤️

[Greekyoghurtlover]

Hi I also take mycophenolate and have to ring the Rheumatology nurse or GP when I get an infection. I'm just recovering from a chest infection and have to stop taking mycophenolate when I'm taking antibiotics. The mycophenolate stops the immune system fight the infection so the antibiotics won't work. Unfortunately I get quite ill with chest infections now ,I have interstitial lung disease secondary to Lupus/ Sjorgens.Ive just been given a weeks worth of steroids to help. Hope you mum feels better soon x

[Ajackson10 in reply to Greekyoghurtlover]

This is really helpful - thank you. I think she has the GP coming out to see her this morning so I imagine they may give her antibiotics now.

[Lakemom in reply to Ajackson10]

Make sure to tell the doctor that she is taking mycophenolate

[Ajackson10 in reply to Greekyoghurtlover]

She's just been prescribed antibiotics. She stopped the mycophenolate 2 days ago but she didn't ask if that was long enough off them to start the antibiotics immediately. Do you think that should be ok?

[Greekyoghurtlover in reply to Ajackson10]

Yes that us okay i stopped my mycophenolate the day I started the antibiotics ,better to start them straight away x

[Clangerscat]

Hi you should have a number or email to take you directly to the specialist rheumatology nurse, although they can take a couple of days to get back to you. Try your pharmacist at your mums GP they are very knowledgeable about your these things. If no luck and mum is not improving I would suggest 111. Hope you get some help and mum feels better soon

[Ajackson10 in reply to Clangerscat]

Thank you for the advice. Yeah the hospital say to get straight in touch but it never works that way you only seem to get a receptionist at best.

[positivedaybyday in reply to Ajackson10]

You should gave a direct number to the specialist nurse in the Rheumatology department. Calling the normal hospital number is of no use.If you have a letter from your mums Consultant try calling his /her secretary. Hopefully you can obtain the number or be redirected.

Most GP's don't have the understanding of this complex disease so you really need to speak to the experts.

When I call the specialist nurse she always answers or it goes to voicemail & she calls me back.

I hope you're successful & your mum improves

[Ajackson10 in reply to positivedaybyday]

Thank you ❤️. She def doesn't have as good a rheumatology as that they seem to make it as difficult as possible for her to be able to speak to anyone.

[positivedaybyday in reply to Ajackson10]

Omg that's awful. What area are you in? Perhaps there's a better team at another hospital. Mine is Salford Royal in Manchester & they are superb!

[OldTed60]

It varies so much depending where you live and which hospital you attend - such a shame we have a postcode lottery in UK - especially with such a rare disease. I’m fortunate to at least have a phone line to rheumatology nurses and can leave a message so they phone back - usually within a day or two - depending on urgency of message. I always stop my mycophenolate if I’m ill and need antibiotics or just to give my immune system a chance to fight the infection. I hope your mum is feeling a bit better now but if not please don’t hesitate to phone 111.