Mycophenolate question

[joannebond360]

I have been on mycophenolate for two weeks, I have had a cold for weeks which seems to finally be getting better. I have swollen, really painful glands on my neck and armpits. Is this anything to worry about? Keep reading that you have to report to your gp with that, don't have a temperature. Getting so paranoid about getting infections!

[Slowmo]

Hi Joanne, I'm on the same, told my GP yday about a problem throat, less sore more painful and feels like it's blocked - difficulty swallowing - she wasted no time - took bloods to check white cells and also told me to contact my rheumy nurse and discuss. I did this and last weeks tests showed I had influenza, antibiotics were prescribed straight away.

I guess if this is a new problem it's probably best to discuss with your GP initially.

Hope you get to the bottom of the cause of this. I'm also new to mycophenelate, it'll be interesting to see how we do on it, I'm around 6-7 weeks in - so far i've seen an improvement in sleeping at night and generally use less pain relief, a start to what I hope will be far more improvements in my symptoms and yours too.

[joannebond360 in reply to Slowmo]

Hi Slowmo. Thanks for that info. Wish it wasn't the weekend or I would go to the gp! It's actually really painful in my neck!

I am so surprised how much kinder this medicine feels, was on methotrexate before and felt terrible! It did help my joints though, a lot!

Looking forward to seeing some benefits! So glad that you have had some improvement that's fantastic. Here's hoping to lots more!

Jo x

[Barnclown]

Hi there joanne & slowmo

I'm into my second week on daily 500mg myco, and had my first bloods tests yesterday. If the results are ok, I'll go up to 1000mg.

So far so good: I know myco takes up to 3 months to show full effects, but already i like the feel of myco: am sensing a noticeable degree of general slight improvement, but with none of the 'hyper' I feel on prednisolone

Am glad you posted about your suspicious symptoms, cause am feeling my way into how to handle anything like that myself: My rhuemy & gp both said that I should get back to my surgery as soon as any infection signs seem to have set in. I didn't ask about weekends...but Now i will when I see my go for bloods results on Friday!

[Purpletop]

Speak to your GP but myco tends to make you feel your whole body one way or another in the first few weeks. If myco is at low dose it is unlikely to cause a drop in white blood cells at this point. What's your current dose?

[joannebond360 in reply to Purpletop]

Hi purpletop. I have upped the dose this week to 500mg morning and 500mg in the evening. Only on my 2nd week.

Hi barnclown. Great news that you have noticed some benefit already! Hope you continue to feel better.

[Purpletop in reply to joannebond360]

1g is not that high but the increase could have triggered the armpit/neck pain/swelling. See how you feel this weekend and if it hasn't improved by Monday, speak to the GP. It is likely that it will improve on its own but if it isn't, the GP will take some blood to check white blood cells.

Try not to panic - myco is not bad. I've been on it for 6 months now and bar few odd side effects here and there (muscle twitching/tremor and white noise in one of my ears), it has settled down ok.

[joannebond360 in reply to Purpletop]

Thanks purpletop, feel reassured with everyone's replies. Will definitely go Monday if it's not got better. So good to hear that you have settled on it well. Definitely the best med that I have tried so far. Felt so ill on all the others.

Jo x

[mstr in reply to joannebond360]

Good to hear that this med is so having positive effects for all. Cannot wait to discuss this with rheumy when I visit on the 5th Feb. It's great when you hear that there is benefits to the meds.

[joannebond360 in reply to mstr]

Hi mstr. Let us know what they say. Good luck with your appointment.

Jo x

[mstr in reply to joannebond360]

Thanks xx

[Slowmo]

Hi again all, it's so good to hear other's experiences, as I said I've been on myco for about 7 wks now and some benefits - but agree with both Joanne and Purpletop that it feels more gentle in some ways, on the same dose - 500 twice daily - bloods looking good so far (fingers crossed), but still on pred too so far so hoping to drop that in the near future, I really hope this one works for all of us, I was on Azathioprine for 22 months until it caused liver problems so holding a lot of hope on this one. Good luck all and lets keep each other informed regarding our progress, and Joanne as purpletop says if no better on Monday give someone a ring.

Slowmo, x

[joannebond360 in reply to Slowmo]

Thanks Slowmo. Yeah be great to keep in touch about our progress. Yeah I will call the gp Monday if no better. Good luck everyone with it.

Jo x