Myclphenate anxiety and paranoia!

[Luppykate]

Hi, not posted for a while but having dreadful time... Lost lot of sight thro lupus and after every infusion and biologic plus chemo drugs now on mmf.... Eye sight didn't improve after all above.. In fact worse. I keep feeling like I am going to be sick... Feel very tired and tearful... Got my new prescription 10 days ago and different manufacturer of mmf and things been far worse... I am wondering if anyone else had this? I been taking mmf for 3 months and this last 10 days been so bad.. Constant crying and weird thoughts... Love th is lupus!!! Feel very alone as friends just don't get it or fed up with me more like! Be good to hear if anyone else similar.

[1573]

Hi Ive been taking Cellcept for the past year as well as plaquenill and steriods. I did have problems at first so my dose was reduced I now take 3 250 mg in the morning and 1 with dinner and have reduced my steriods from 20mg to 3mg in the past year.I was told at the start to stay with the brand that you start on and not to change as this may have a different effect. You should go back to your doctor and tell them how your feeling. I hope you get things sorted out.

[Luppykate in reply to 1573]

Thank you. I am going to my chemist to see if they can reorder same brand

[neicer]

Sorry to hear about your sight problems. I had steroid induced glaucoma which is a pig. Go back to your doc tell them how you feel. It's not defeat to get help with mental health. This is a man symptom of Lupus. Meds take ages to kick in but you must not suffer n silence. No one but you and other Luppies know how weird this disease makes us feel. Good friends will stick by you. Understanding is our greatest challenge, get fed up explaining myself. I am a 22 year veteran to connective tissue disease and have had good and bad times, won't soft soap it, it's a tough fight. But it's worth it for the times you feel better . Wishing you best wishes xxxxx

[Rubylu]

Oh, poor you Luppykate. I'm not on the same drugs as you but do have NSSLE. My symptoms are fairly well managed but it took a while, during which time I felt dreadful!

You can let off steam here, you're not alone.

Do ask to speak to your specialist who prescribed your medication. Ring their secrets Ian's explain what's happening. I'm sure they would want to know.

I hope you get some help soon and I'm sorry you're getting psychological symptoms. Take care and let us know how you're getting on. X

[baba]

It is important to have the same brand mycophenolate.

patient.info/medicine/mycop...

[SuSaN119]

What is mmf? I know that Plaquenil causes loss of sight ... I may be taken off of the drug after being on it for 20+ years...

[Anicca]

Hi there - so sorry to hear about what you're going through. Just to add to the comments: I'm also on Cellcept and found anxiety the worst side-effect. At first I stopped it, then switched to the Roche brand (I had been on a generic) which helped a little, but I can still only tolerate 250mg a day - 1/4 dose. As well as this I have a 1/4 dose plaquenil and steroids, but my symptoms are not managed at all well. We haven't found any combination yet my body can tolerate. BTW, anxiety hadn't been an issue before, so I knew it was a drug reaction.

All the best - I hope things get better for you soon!

[Chanpreet_Walia LUPUS UK]

Hi Luppykate,

I am sorry to hear that you are experiencing symptoms that are affecting your vision.

Sometimes, certain situations can be overwhelming which is why talking to someone can help relive worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at [e-mail] . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....

We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you may like to read here: lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.