Painful feet with Lupus?

[Lupuslost]

Hello lovely peeps. I was diagnosed with lupus nephritis last week and started cyclophosphamide yesterday. I have noticed this week that when I have a bath it is really painful on my feet, like it is when you submerge a burnt body part in hot water. They then mark up with pin pricks as do my legs though they don't hurt. Anyone had this? I read that Epsom salts were ideal for lupus but this makes bathing very difficult!

I have attempted to add a photo.... (Apols in advance!). I have been suffering with what appears to be hives for a month or so, made much worse when I started steroids, not sure if related or not, and my skin is still very mottled though the swellings have gone, but the feet seems a different thing. I have also suffered with cold feet, raynaud's too I presume, so wondering if it is something to do with that

And one other thing, I have noticed my wee is pink tonight, cyclophosphamide yesterday. No pain or urgency though, so not sure whether to be concerned.

Thanks so much for any advice in advance!

Jess x

[Lupuslost]

Also,just looking at other posts, I also started on hydroxychloraquin two weeks ago and now wonder if this is related? The top of my feet really hurt too. Thanks!

[nicholson27]

Hi Jess,

Although I have Wegeners granulomatosis (GPA) and not Lupus, I do have a fair bit of experience of cyclophosphamide infusions having had 16 of them and also have been on varying doses of steroids over the past 5 years.

Cyclophosphamide is well known for having the possibility of causing bladder problems and different hospitals have different ways of trying to protect against this. Assuming that you have no history of bladder problems, some will put you on a 5 litre fluid infusion before giving the drug to encourage your body to flush the drug out of the bladder by the normal process. They also tell you to keep drinking water for the following 24 hours or so.

Other hospitals will give you a drug called Mensa before the cyclophosphamide infusion which is a bladder protector.

Did the hospital where you had your infusion do either of the above? I would certainly mention the pink wee as it sounds like it could be related to cyclophosphamide and if you are going to have further infusions they should probably be giving you Mensa.

Not sure about the sensation you are getting in your feet although I do remember having pain and numbness is my feet when I was on high steroid doses (75 - 85mg Prednisolone per day). I’m glad to say that these eased a lot as the dose of steroids was reduced over time. These sensations may have been drug related or nerve related caused by blood vessel inflammation but they never gave a definitive answer.

Sorry I can’t be more help and hope you can get some help to relieve these problems soon.

Happy Christmas and stay safe.

[Lupuslost in reply to nicholson27]

Hi

Thanks so much for your response. They did actually give me Mensa after my treatment yesterday, I shall definitely mention it to them but it does seem to have cleared today.

Guessing all these little aches and irritants are going to become part of my new normal that I need to get used to!

Thanks again, merry Christmas to you

Jess

[sarahalice]

Hi. It could be chilblains, I get them every year for over 4 months at a time, they are very painful and worse after a shower.I know having lupus we are more likely to get them.

Definitely worth asking your GP about it.

Merry Christmas, Sarah x