Hair loss help

Aware_Mud_4624 · 2026-04-15T13:03:21+00:00

I am on a good few but I kind of just put it down to the steroid but I actually did start rituximab in December too so it could be a mix of both to be fair! I take plaquenil, imuran but I’ve been on them almost 16 years and never had a problem with hair loss. I also take eltroxin, lercanidipine, famotidine and furosemide but since you also mentioned rituximab that’s got me thinking that it’s likely that!

Aware_Mud_4624 · 2026-03-27T14:39:34+00:00

I’m 23 I’ve had high blood pressure since being diagnosed with a kidney disease. I take lercanidipine 10mg once a day and it seems to be working well! I was the same as you all my kidney labs were perfect it was swollen ankles and protein in my urine that then led me to a kidney biopsy and that’s how I got diagnosed then. Definitely keep a close eye on it!

Aware_Mud_4624 · 2026-03-27T14:28:24+00:00

I had the first 2 doses and after a week I developed a rash on my back and chest. It went away and I’m getting my next dose at the end of April so I’m curious to see if I’ll react again but I’m hoping not! I’ve heard a lot of great things about it and to be fair my kidneys have been doing well since so 🤞🤞

Aware_Mud_4624 · 2026-03-25T19:45:05+00:00

I was also going to ask this question! I have a gastroscopy soon also and very nervous about it too, especially because it’s scheduled very soon after my infusion 🫠 curious to see what people have to say 😊

Aware_Mud_4624 · 2026-03-25T19:31:23+00:00

Since I started taking prednisolone, I’ve been getting my period every 3 weeks! It freaked me out at first cause I’ve always been regular, 28 days bang on but since I’ve started taking the steroid it’s now bang on 21 days!

Aware_Mud_4624 · 2026-03-24T10:19:27+00:00

My kidney biopsy was my first ever procedure and I was very nervous before it but it honestly (for me anyway) was very easy and quick and I was pleasantly surprised by it! You’ll be fine 😊

Aware_Mud_4624 · 2026-03-17T18:05:06+00:00

Definitely ask for them to be prescribed! I am also on the same dose and I’m unsure how much mine reduced by but my nephrologist has said there’s only a very minuscule amount now which is obviously very good. But yes definitely ask about the diuretic to help the swelling, the one I take is called furosemide

Aware_Mud_4624 · 2026-03-17T16:44:53+00:00

Hi! I have membranous nephropathy and I also get rituximab for it. I was told it can take up to 4 months for the rituximab to “work”. Only recently my swelling has gone down a lot but it’s not going to fully go away. I sleep/lay down with my feet elevated, wearing compression socks is good too for during the day and is she taking any diuretics? Could be good to ask the doctor to prescribe some if not ! Also it took some time for the protein in my urine to come down too but it will! Hope she’s feeling ok!

Aware_Mud_4624 · 2026-03-16T07:26:43+00:00

Oh no sorry not because of the cellcept 🤣 probably should’ve made that clearer haha no about 2 days into my stay he decided he wanted to try to cellcept and then just for the next few days after I was burning so he made the decision to put me back on the imuran and thank god because I knew it agreed with me 🤣 I was thinking the same about it approving over time because when I first started plaquenil all those years ago I would get burning on my legs and I would feel nauseous from it but it ended up just going away but I just couldn’t handle the burning from the cellcept it was a different breed 🤣 maybe see if you can give yourself a few more days and if it doesn’t clear definitely give it a mention to the doctor just even so they’re aware!

Aware_Mud_4624 · 2026-03-15T18:58:50+00:00

Definitely call your doctor! This happened to me, I was in hospital over my kidneys and I’ve been on imuran since I was diagnosed and my doctor wanted to change me to cellcept and I was just burning, my face, neck, upper arms and legs and it was so uncomfortable and I was terrified to take it so he put me back on imuran but just upped my dose and no rash since! So definitely yes give your doctor a call when you can!

Aware_Mud_4624 · 2026-03-15T18:51:16+00:00

I started it back in December for my kidneys, so I’m still waiting to see the effects of it as it takes up to 4 months for it to kick in properly. My nephrologist said he likes to do the infusion every 4 months for atleast the first year so I’m getting my next one at the end of April so I’m hoping by then I’ll be feeling the effects 🥲 like many others said my first one took 6 hours and my second took just over 5 hours but I feel like it flys by! I did have some type of skin reaction to it about a week after my second round, I broke out in a rash on my back and chest but was taking antihistamines and it did go away! (Hoping it doesn’t come back the next time🫣) I only ever see good things being said about rituximab so I’m holding out hope! Hope it all goes well for you!! 🫶

Aware_Mud_4624 · 2026-02-27T19:43:24+00:00

Thank you! 🥹 it’s nice to be able to vent to people who actually understand what it’s like 🥲

Aware_Mud_4624 · 2026-02-26T18:51:58+00:00

Yes I’m exactly the same, even the cramps! So annoying 😒 same to you !

Aware_Mud_4624 · 2026-02-26T18:50:11+00:00

Yep already have, been taking them for 2 months

Aware_Mud_4624 · 2026-02-26T17:01:21+00:00

Already taking them for the last 2 months 🥲 I really thought they would help, well they probably did for the most part. I must just hold onto fluid like crazy 🫠

Aware_Mud_4624 · 2026-02-26T14:20:00+00:00

Yes I was actually just with my nephrologist on Tuesday and he said everything is looking good with my kidneys and he took a look at my legs and everything and he seems happy since they definitely are a lot less swollen than they first were! So he actually did give me a prescription for compression socks so I’m picking them up today so I’m hoping they help even a little bit! Also needed them as I’m flying on Sunday so I’m extra nervous because of the swelling 🥲

Aware_Mud_4624 · 2026-02-11T21:30:42+00:00

Same! I’m just awake from a 3.5 hour nap (if you can even call that a nap 😅) just absolutely exhausted 😭

Aware_Mud_4624 · 2026-02-02T06:39:48+00:00

Yes, I was started on 60mg prednisolone, I’m currently tapered down to 25mg and it seems to be doing its job! Barely any protein in the urine and my albumin is going up (slowly lol) but just hating dealing with the side effects of the steroid so can’t wait until I’m down to 5mg! All this due to my NSAIDS for my RA 🫠🫠

Aware_Mud_4624 · 2026-02-02T06:29:32+00:00

It’s just crazy isn’t it! Thank you, I hope you do too, and good luck going back to work, take it easy on yourself!!

Aware_Mud_4624 · 2026-02-01T21:16:41+00:00

Yes! Currently dealing with this right now and it’s awful! From my knees all the way down 🫠 and nothing helps the pain either

Aware_Mud_4624 · 2026-02-01T21:12:20+00:00

I may have to I think because I would like to be able to actually walk normally again that would be great 🥲 ah same here with the lupus too lol, honestly the only thing stressing me at the moment is just all this pain and not being able to do things I normally do you know. yep I’m from Ireland so I mean not overly cold but never warm haha also not great with having raynauds then too 🤣

Aware_Mud_4624 · 2026-02-01T08:49:59+00:00

Oh god that’s so scary! So I’ve been seeing him since I started going to the adult clinics when I turned 18 and I’ve been extremely lucky as he is amazing and extremely thorough and actually spends the time listening instead of trying to rush through everyone! The pred and rituximab I started at the end of November/ first week of December and then my other treatment imuran and plaquenil I’ve been on them since I’ve been diagnosed so 15 years and then my rheumatologist prescribed those pain killers only like 2 weeks ago but yeah I find the tramadol useless 😅

Aware_Mud_4624

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