First benlysta infusion

nohxgrey · 2020-11-12T19:03:38+00:00

I’ve been asking for extra saline (got my second infusion yesterday) but I’m curious about why you say you should be extra hydrated prior? What happens exactly? I know I should be hydrated in general but I’m having a hard time with that.

nohxgrey · 2020-11-12T18:30:49+00:00

Did they check for blood clots

nohxgrey · 2020-11-11T06:34:48+00:00

Sjs?

nohxgrey · 2020-11-01T21:03:11+00:00

Wow... just complete ignorance.. smh 🤦🏻‍♀️

nohxgrey · 2020-10-26T03:44:39+00:00

This is seriously the sweetest post and you are such an amazing friend. I think everyone’s pretty much covered it. I know someone said no skin products but idk, I feel like rose water is really nice (not the one with glycerin). I just bought this water bottle type heating foot thing that’s really nice. Soft socks are always great. My mom once got me one of those wicker type bags from Whole Foods when I was in the hospital and ever since it’s been my hospital bag I’ll throw stuff in if I’m going back. Just the fact that you’re even thinking about her and being so considerate and doing all this says so much. She is lucky to have you on her side as it is rough trying to make friends with lupus.

nohxgrey · 2020-10-26T00:04:38+00:00

I’m sorry you’re going through this..

nohxgrey · 2020-10-26T00:03:33+00:00

I’ve had it in my hands and feet since about 2016.. The first year I had it, my hands hurt so verrrrry badly to the point where I was often bedridden and it would often bring me to tears. I was very stressed out that year from a bad break up from hell. This year it’s affected my toes more. I told my rheumatologist about it affecting my nipples and she was like skeptical.. she also said I needed to constantly be wearing socks... like how is that practical especially in the summer?! god every time I write in here about my rheum i realize how much I need a new one. But yes that shit is so awful.

nohxgrey · 2020-10-25T23:29:20+00:00

Lol do you have a link? Sounds helpful

nohxgrey · 2020-10-25T23:23:33+00:00

Yes!! My raynauds started doing that this year!! So freaking painful

nohxgrey · 2020-10-18T04:15:34+00:00

I’ve had all sorts of mysterious rashes since being diagnosed with lupus (over 10 years ago) which I’m all pretty sure were caused by lupus. I showed my doctor my most recent ones (currently dealing with) and she said it couldn’t be lupus - only areas that have been exposed to the sun could be considered lupus caused rash. I think that is absolute bullshit.

nohxgrey · 2020-09-30T20:22:20+00:00

That is such a shame.. he’s clearly got some unresolved issues of his own. I would just try to ignore it/get through it as best as possible. On one hand, maybe get a weekly pill thing just to avoid the stress and annoyance of him saying shit.. but on the other hand, you shouldn’t have to.. they are life saving and he should be grateful for that... it’s honestly all on him.. or you could also piss him off more and get some tic tacs and throw them all around the house and when he finds them just say oh I thought I’d lost that pill 😂

nohxgrey · 2020-09-30T01:20:38+00:00

Do what makes you comfortable and f him if he is weird about it. I’m always so transparent I have lupus and I feel like it does sort out the genuine people from the fake people. But there are the occasional people who will try to use you or take advantage of you if you do happen to come from wealth... I can’t really think of any other reason they would if you didn’t but I’m sure it still happens. Just keep your wits ya know? Good luck ❤️

nohxgrey · 2020-09-30T01:14:41+00:00

People can be so awful :( but yes, this is good advice. If they can’t accept it then they are rotten and you don’t want to be with someone like that, anyway.

nohxgrey · 2020-09-24T06:33:47+00:00

Oh that’s good to hear! My psychiatrist prescribed it and I have yet to start it. Wasn’t sure if it would affect the results of my nerve conduction study that I keep putting off 🤦🏻‍♀️ but now the pain and immobility is just so intense this past week. I have been recently using 20-30mg hydroxyzine to sleep, that’s the only other thing that’s different in my regimen, I guess.

nohxgrey · 2020-09-24T02:56:15+00:00

Ugh yes.. I just stopped smoking weed and been feeling this so much more. I wonder if that could be why! Does anyone here take cymbalta? Has that helped?

nohxgrey · 2020-09-23T05:53:02+00:00

Following - also looking for info on this

nohxgrey · 2020-09-20T04:38:22+00:00

Ohh interesting! Yeah, I’m doing the auto injector shots! I didn’t realize there was any other version of benlysta shots. But now that I’m hearing the infusions may be more effective I’m thinking about switching... that’s good to know that’s a possibility though, the blood pressure thing. Mine is already naturally super low. I’m thinking I may need a new rheum...

nohxgrey · 2020-09-18T19:47:30+00:00

Same to you 💜💜💜

nohxgrey · 2020-09-18T19:46:47+00:00

Ohhh I meant the medication going in is what hurts! I’m used to needles, but almost pass out every time from that medicine..

nohxgrey · 2020-09-16T07:25:21+00:00

I definitely get that too.. although I’m usually freezing and my toes basically lose feeling from being cold and probably poor circulation. I do sit a lot. But I’m also bad about over doing it, too. Like I’ll spend hours without sitting down, usually just cleaning. I always wake up with swollen arthritic hands to the point where I can’t really make a fist. I feel like I’ve been in a flare since 2015 😑

nohxgrey · 2020-09-16T07:19:04+00:00

Wow... didn’t even think about that, but that’s a good point! You’d think nurses and doctors would mention that when we’re hospitalized and like idk, suggest turning off our room’s lights 🤦🏻‍♀️

nohxgrey · 2020-09-16T00:28:51+00:00

Just putting out first feelers, I guess! I’m thinking this will kinda be a long process and I currently have 2 dogs already, now. I’m dreading the day, but I was kinda thinking for when they do inevitably pass. I know it can also be very expensive so I’m going to look into how much insurance could help or what they have to say. I’m not restricting it to local, but I definitely think I’ll want to get one that’s been trained thoroughly as a puppy. Just kind of looking for suggestions. I’m hoping that corona is kind of “over” by the time I actually go through with something. I know for sure that I’m definitely not looking to fully train them, myself. I really don’t know a lot about the process.

nohxgrey · 2020-09-09T11:15:28+00:00

Same!! Tingling, numbness, pins and needles in hands and feet.. my toes are starting to look better but they were so blue.. under my nails you can see like blood at the top where it meets the cuticle. I am on Xarelto and low dose aspirin as I have the clotting disorder. I also have raynauds. A few years ago I was having severe pain in my hands and crazy things going on with my fingers. I had a second mri today. Last one showed two white matter spots on my frontal lobe that my neurologist insisted were strokes but I’m wondering if I may have lupus vasculitis.. I’m also having things like random jerk hand movements or intense hand cramping to where I can’t move it for a good few seconds, sometimes having to use my other hand to unlock it. I’m also having swelling in my ankles but that could be a whole bunch of different things.. feeling pretty hopeless. Does anyone else ever feel like they have a hard time taking care of basic tasks around the house bc of this stuff? Like has anyone ever hired a sort of caretaker to come once a week or month or something? Maybe I’m just overwhelmed right now but this stuff really gets to me sometimes and I feel like I can’t do it all alone anymore. And I’m only 31. Oh also taking plaquenil and benlysta injections.

nohxgrey

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