u/RainPsychological686

So i was switched to Myfortic for my nephritis because MMF caused some pretty bad GI issues. My rheum also ordered a gastroscopy for me which i did on Monday and it showed i had gastritis and the endoscopist prescribed me famotidine to take before bed to help my stomach heal. Since that gastroscopy i have literally had two of the worst nights ive had in a long time. The first night i just could not sleep at all and last night while i did eventually manage to fall asleep around 3am it was like my body was so stressed out and restless that sleeping felt like it was going to be impossible. Even as i woke up today that tension has not gone away at all and its like my muscles are too tense to relax and its majorly uncomfortable. Has anyone else experienced this and if so what can i do to combat it? Its only been two nights of bad sleep and im at my wits end. While the bad sleep is nothing new even before i was diagnosed, this discomfort is a new thing for me.

So i started 1.5g of MMF back in March when i was diagnosed then stopped it temporarily in April-June while i was on cyclophosphamide. I went back on it for maintenance starting from 500mg and i then went up to 1.5g like i was originally however last week i developed GI issues. I have now been prescribed Myfortic today in hopes that it solves the GI issues but i find it hard to believe that what worked for me back in March ive now become intolerant to. I honestly feel like i might just have a stomach bug but my docs were sure it was the MMF. Has this happened to anyone?

Im experiencing what i think is steroid withdrawal symptoms. My doc told me to go down from 10mg to 5mg and didnt say i needed to go down in smaller intervals so i trusted her since ive done that before with no issues. Its been 3 days of feeling somewhat okay but todays day 4 and istg i feel like im at deaths door. Nausea, fatigue, bp fluctuations making me feel like absolute shit. Since its the weekend i call 111 since i cant get a hold of my Rheumatologist until Monday (already emailed since i dont have their phone number). I saw a GP who was absolutely shit. He told me wrong information because he said withdrawal only happens when you go completely off the medications, i tried to advocate for myself and told him what i had been experiencing the last 4 days but he wasnt hearing any of it. My mother was even there with me and was agreeing with the GP to his face and then once we got out the door she told me he was chatting shit which ofc i already knew.

So now i have to suffer for the next two days until monday since i cant adjust my dose without my docs permission. Honestly thank God i had some ondansetron at home because that asshole didnt even prescribe that for me even though i said to him i had persistent nausea. I only have enough for a week though so i was hoping hed prescribe it but ofc he didnt. Ive only been diagnosed and dealing with symptoms since march but istg im at the end of my tether with this fucking disease, been crying non stop today because its just been so flipping hard dealing with it all. My BP was at my normal again at the GP but im scared it might drop again during the night or tomorrow morning.

Has anyone been able to apply for the medical exemption certificate to help with getting prescriptions? Ive applied and have been told i dont qualify because i work a full time job. Has anyone been successful in getting this? and if so how?

I had my first day back today after 5 months sick leave due to me being diagnosed. Its a phased return so i am only doing 3hrs and 45 mins for the first 3 weeks then increasing gradually back to full time after that. When i got there the nausea, headache and fatigue set in after about an hour. I cant help but feel like this is gonna be the rest of my life now and if i can just barely handle 3 hours at work how can i handle these symptoms and have a career for the rest of my life? Im only 26. Im scared for tomorrow when i show up to work again, heck im scared for my future at this point.

I think im in a flare rn but im not 100% sure if it is one because if it is, it would be my very first since my diagnosis but rn my joints are screaming at every possible movement so maybe? But ive also been getting what feels like a very stiff neck if im sat upright for too long. It doesnt hurt much but its real uncomfortable. Im supposed to be returning to work next week after 6 months sick leave due to my diagnosis and treatment and im finding myself wondering if i can even manage if im getting discomfort from my neck. The joint pain i can tolerate.

I havent had any flare ups since my first flare that led to my nephritis diagnosis back in march this year. The last blood test i had showed that the cytoxan had put my nephritis into a state of remission where proteinuria was minimal. However its been over a month since that last appointment with my Rheumatologist and last week i caught what seems like a cold or an upper respiratory virus and since then ive been having joint pains and lots of fatigue again as well as some other symptoms that i had during my first flare only this time its not as bad like i can still manage to do most things. But its got me anxious enough that i visited my GP (PCP if ur in the US) just for some assurance cos i thought this might just be my body still recovering from the virus which the GP said it likely was but now my anxiety is going a lil overboard and i cant help but wonder if its a flare. Do you guys just manage it yourself? and if so what do you do to help yourself? I have a Rheumatologist appointment in a few days so im hoping to hold out until then as i dont have any contact number for them to see me earlier.

My sister and i both have Airalo esims booked for 5 days. Both of our esims stopped working within 5 mins of each other. Does anyone know whats going on? I have been trying to sort the issue out but nothings working so far

Im generally well despite having lupus nephritis although at the moment i struggle with walking long distances (like more than 10mins), like i can do it but it hurts.

Im the airport rn as im travelling overseas for a holiday and its the first time ive ever requested wheelchair assistance (we did this in advance jic cos i didnt know how id feel until day of) but ive generally so far been quite well and felt well physically. Until we landed in our transit airport then i started to feel a little pain. Even then though when i got the assistance i felt like i could still walk with the pain just slower and i felt like i shouldnt be in this chair. Not to mention im relatively young so i got some weird looks from older people that were walking while sitting in the wheelchair. What made it worse was my family basically asking me if i was sure i needed it whenever we got to a an assistance area after we landed at both of our transit points where we could ask for it to the point where i felt so uncomfortable asking for it to the point where there were two points in time where i just said “forget it” and walked at a fairly slow pace. My parents walked so far ahead of me and so fast that i was struggling to catch up though even though we were early to our gate

I have a flight out of tokyo departing at 8:55am. The earliest train i could book was the 5:45am keisei skyliner which arrives at Narita at around 6:30am. I know ideally we should arrive at least 3 hours before departure so i was wondering if this would allow us to be able to check in (we have checked bags too) and go through security with enough time?

I have been off work since ive been diagnosed with Lupus Nephritis which was since beginning of March. Since then ive done a full course of cytoxan on the euro lupus protocol and according to my Rheumatologist, things are moving positively. The whole time ive been off work and now that ive completed the course im now in a position where i can consider returning to work and i definitely would like to but im anxious about doing it. Ive already had discussions with my manager and we are implementing a phased return and adjustments for me. Where i work is mainly seated anyways cos i work in a lab so my adjustments would mainly just be needing to take breaks more as well as necessary precautions for infection control etc and the lab already has some of the things that i would need like LED lighting which was installed 2 years ago etc.

Although knowing all this hasnt really settled my anxiety about returning to work with lupus nephritis as i worry that despite all the adjustments i wouldnt be able to manage and i cant afford to not work and i cant do remote work due to the nature of my job and they dont offer part time so it would either be i work or i quit which isnt financially realistic for me rn. So for some reassurance id love to hear if anyone is able to work full time and is managing positively.

Im about to finish my last dose of Cytoxan next week (Euro lupus protocol) and i wondered if anyone felt better energy wise? Or vice versa did anyone feel worse after finishing it? The Cytoxan makes me quite nauseous and fatigued but its manageable and ill be restarting MMF when i finish the course. It appears to be working as my levels are still high but they are moving slowly in a positive trend which my rheumatologist seems to be happy with. Tbh I just want to have a rough idea of what im getting myself into in terms of energy and fatigue as i will be returning to work shortly after finishing. Phased return at first but back to full time after 6 weeks.

Hi, im currently writing this at 1:30am my local time. For the last 2 weeks ive been having such a hard time getting to sleep and actually getting a decent 8 hours at least. At most ive been averaging about 4-5 hours a night although i suspect i wont sleep at all tonight because its especially bad. Im not in pain or anything but im just totally restless like i cant stay still. I take my pred and hcq in the mornings to avoid this as well. Is there anything else i could try to help me with this? I mentioned it to the rhematologist but unfortunately that was around the time we had a heatwave and she pegged it down to that even though i told her it wasnt that. I even wondered if it could also be my sleep schedule just being messed up where i havent been working in the last 6 months due to my diagnosis and treatment.

Any tips would be majorly appreciated. Im almost starting to lose hope getting any decent sleep.

Nothing about today on its own would have made me want to cry. But i feel like ive been holding it all in since my diagnosis and my going through treatment that i cant do it much longer. Today i went for a leuprolide injection as i usually do every two weeks and the pharmacy were delayed in delivering it to the clinic so i was sent home. I need to go back in 2 days for it.

Then i tried getting my medication summary for travel purposes because my mother has literally been on my flipping case about getting it even though i had told her that a simple clinic letter would be enough. She was also told the same by my GP, Rheumatologist and the nurses but wouldnt listen and kept pestering me to do it. I had to tell her that i couldnt do it until they finalised my prescriptions cos they have been changing it a lot due to me having reactions to certain ones. They finalised it today so to appease my mother because she literally wouldnt stop, i went and did as she said which turned out to be a total waste of time as the document is useless. We then proceeded to argue on the phone where she wouldnt even let me get a word in and it was all because a friend had told her i needed it. She never put the research in to find out for herself like i did. The conversation ended with her saying “fine you win, ill shut up now”. I didnt appreciate her tone and the fact that she even said that so i hung up on her.

Theres other things as well like the other day all i did was ask her for her opinion on whether or not i should wait until after we come back from vacation to get some dental work done and that conversation just stressed me out because she wasnt being helpful at all and at the end of it when i went to go eat she just let out a huge scream and scared the crap out of me. When i asked her if she was okay she proceeded to talk to me like trash then after she apologised and said she was stressed. Like wtf? YOUR STRESSED! Babes you arent the one with a chronic condition where stress can literally kill you and yet you seem to be the one causing mine right now. Ive gone through months of crap and have mostly kept a straight face but you are pushing it too much rn.

Shes meant to be my caregiver cos thats what she tells people and attends appointments with me. But theres literally no point for her because when she sits in those appointments shes on her phone not listening and outside of that shes practically useless and i manage it all myself. Im sorry im saying this about my mum rn but shes driving me insane.

I was just prescribed some new antibiotics today along with my other meds but its in a 200ml bottle. If i have the prescription/drs note is this acceptable to put into my carry on? Im travelling from london to Philippines via Doha in 2 weeks time.

Essentially as the title says. How do you deal with jet lag whilst having lupus?

I booked a trip pre diagnosis which due to scheduling conflicts only gives me 3 full days in tokyo before i fly back out again. 5 if i count in my departure and arrival days.

Id like to try and enjoy what i can while im out there and not be in bed with jet lag. This will be my first time travelling anywhere since my diagnosis and so any tips would be appreciated

Has anyone specifically in the UK had to get a medical letter for travel? Im travelling to Philippines and Tokyo next month and i will be needing to bring a letter with me alongside my meds but im not sure how to do it? Ive only been diagnosed a few months ago and ive never had to do this before. Do i just ask my rheumatologist for this?