Admitted to hospital

[LSurtees]

Hi all

sorry not been on for a while, been in hospital and still here!

can I ask if anyone has had any problems with Mycophenolate mofetil (MMF) please?

Thank you

Linds xx

[Barnclown]

😯 Oh linds...am sorry you're still in this extra rough patch 🌷🌷🌷🌷🌷

I've had 🤞🤞🤞🤞 no probs wit MMF...but am always on the watch for these...doe your inpatient stay involve probs with MMF?

Wishing you Every Beat Wish

🍀😘🍀😘🍀😘 coco

[LSurtees in reply to Barnclown]

Had MRI scan yesterday and they have said its not great but no growth? Need to have another one with contrast early next week.

Reason I asked about MMF is that side affects do they muscle weakness and tremors which is what's happening plus I have loss of sensation, tingling, numbness in hands and feet now having it in spine up to neck.

Thank you for your kind words Barnclown xx

[Barnclown in reply to LSurtees]

Mmmmm....👍 No growth! 👌

Well, my clinic usually has us come off a med to see if signs & symptoms disappear 😏....

Sending you a basket full of gentle hugs dear LS ❤️🌷🍀

[Wendy39]

Hello Linds. I'm sorry to read your post and hear you are in hospital. Have you had a serious reaction to the MMF? I've no experience of that. I just wanted to say that I hope you feel better very soon and that you can go home. Being in hospital is no fun. Best wishes for a speedy recovery.

[LSurtees in reply to Wendy39]

Hi Wendy

Thank you for kind words.

I was secretly hoping it was side affect from MMF as I started it about 8 weeks ago but my symptoms gradually git worse, however doc yesterday says it not anything to do wit my meds but my current flare that we haven't got under control yet.........6 months now.

Hope you are well

Linds x

[Hidden]

Hi, sorry to read you are not well. I'm on MMF, a second immunesuppresant,I feel is working for me than the azathioprine ever did.

I get alot of muscle pain,sweating, nerve pains in my hands,feet,arms and legs but I have a herniated spinal cord and is affecting me with spine pain,especially my neck. I have a cyst growing in middle of my spine.

Do you think yours is related to a damaged nerve rather than direct to your medication?

If it was me, I would get it checked out regardless! I know mine is related to nerve damage as I have mctd but currently diagnosed with sle of the brain.

I hope you have a speedy recovery and get some answers.

Sending ((big hugs)) your way. Xx

[LSurtees in reply to Hidden]

Hi Smurfette

Thank you for your reply.

I do now think its nerve damage, MRI scan showed no growth which is great but doc said it did show something but they need a contrast MRI to be done. I should have this tomorrow.

None of symptoms are settling yet, I think docs were hoping they would without any further treatment.

Hope your well

Linds x

[Hidden in reply to LSurtees]

I had a contrast done too on my mri.

Let's us know how you get on.

Good luck for tomorrow! Xx

[whisperit]

Hi,

After about 5 days on mycophenolate, I developed episodes of sweating, shaking and nausea. I stopped taking it and they went away. I tried again a few weeks later with the same result.

My respirologist said that it could be an adverse reaction to MMF, but my rheumy said he didn't think it was.

A month after stopping the MMF, the same symptoms started again, and have persisted till today - nearly 6 months later. I have noticed that they *seem* to have been easing in line with my decreasing my prednisilone dose. So I suspect it wasn't the MMF but the steroid. But even now, my rheumy has no explanation. It's such a difficult job to make sense of these random symptoms, isn't it? You have lots of sympathy and warm wishes from me, anyway MX

[LSurtees in reply to whisperit]

Thank you wisperit

I am now on 30mg of steroids a day but this was only increased when these symptoms started so don't think it will be the steroids, though I don't like taking such a high dose. Before I would have a steroid injection which settled my symptoms for up to 4 weeks.

Not sure what next step is but will do and try anything to get back to normality.

Hope your well

Linds x

[Lupiknits]

Sorry to be late to the post, but I very much hope you get better soon x

[LSurtees in reply to Lupiknits]

Thank you Lupiknits

Hope your well

Linds x

[KarenC]

💖💖💖🌹🌹🌹🌹🗻🗻🗻

[Rubylu]

I don't use it but just wanted to say sorry you're poorly enough to be in hospital. I hope you improve soon.

[LSurtees]

H all

I thought I would give you and update, I am still in hospital 9 days now, had various tests but positive news is I haven't had a stroke as they suspected however it is looking like my lupus is attacking my neurological system and my blood is triple the thickness causing blackouts and severe headaches and nerve pain. I am waiting for a bed in a specialised ward at Chapel Allerton Hospital to be started in Rituximab infusions (hopefully today). I also have nerve conduction tests on Wednesday.

Big hugs to you all

Linds xx