I've had diabetes since I was 14, I am now 21 and am just so tired of it, I'm constantly thinking about it when I'm out with friends, I worry about making loved ones thinking im weak because I need a pen to stay alive (which is very dumb but thats just how I think) and I constantly hope that a cure is near when it doesn't seem likely at all..
My mum has sent me a news article that someone has been 'cured' of diabetes which got me REALLY EXCITED, when she told me there might be a cure in 5 years time I almost jumped and was just so happy but as soon as I went into the article and saw that immunosuppression drugs were needed, I've lost hope again. I know there's people who have it way worse but I actually forgot how to be normal again
Sorry for this rant but I felt like I needed to mention my thoughts because I rarely speak about diabetes to my friends or family as I don't want to bother them with it but I really hope a cure is coming soon.
Hello, does anyone has any advice and/or experience with immunosuppressants? In particular, Ciclosporin or Mycophenolate Mofetil and concerning infections and potential side-effects. I've had a nasty flare-up and my dermatologist is recommending escalating my treatment.
I'm talking minor runny nose but too tired to function for 3+ days
Hello! I'm a fairly freshly diagnosed Crohn's patient and am starting immunosuppressants (Azothioprine) next week. Basically, I wonder whether and how to adjust my life to being more vulnerable to infections. Do you just get on as usual? Are you just a little bit more careful? Do you avoid places like night clubs or things like that? Thanks :)
Is there a better first-line autoimmune suppressant besides Prednisone?
I have no working diagnosis, but my body seems to be attacking itself.
My doctor wants to try a general Immunosuppressant, but I was hoping there was a non-steroid option (I struggle with weight gain).
Any help with your knowledge or experience would be appreciated!
Did anyone else not know Protopic is an immunosuppressant? When I got prescribed it (to help with dupixent-induced face flare-ups), I was told basically nothing about the drug. I knew it was non-steroid, and I (maybe foolishly) assumed that if they didn't tell me much about it, there wasn't anything interesting to know. Two days ago, I googled the medication out of curiosity and found out it was an immunosuppressant, but I couldn't find any info on HOW much it suppresses your immune system.
TL;DR: Does anyone know how powerful of an immunosuppressant Protopic is? Should I be worried to keep using it?
On an somewhat amusing note, I got my Covid booster today, and I had accidentally made an appointment with a kids and immunocompromised-only vaccine center. When I got there, the nurse about to give me the shot got all confused and went "third dose? Uhh . . . are you immunocompromised?" and I almost panicked and said no. But then realized that I was, in fact, taking an immunosuppressive medication. So thanks protopic for letting me get my shot I guess?
While I can see why you would want to take these steroids if you were experiencing cytokine storm, but most people who have covid, even if they need supplemental oxygen, aren't having cytokine storm. Is taking immunosuppressants while trying to fight off and infection counter-intuitive?
Furthermore, dexamethasone inhibits gene expression of all three nitric oxide synthases. Isn't this also counter-intuitive? Not only does nitric oxide dilates the blood vessels, but it also works as an anti-inflammatory. Why would we want to purposefully lower nitric oxide levels if we are trying to recover from Covid?
is this true? i thought it was the most commonly prescribed for jia/ra? is it also a really really scary drug? like is it worse than biologics like remicade? they said they more often give plaquinil first
Today my doctor told me there’s been a small decrease in kidney function over the last year and wants to test again in two months to see if progression gets worse and I will need immunosuppressants. Can anyone tell me about their experience on them? I’m young and ive never had any health issues so this is all new to me and I’m a bit scared.
I’m very bored on this Monday night, I’m 7 months in a cfs reaction from Lyme disease, getting back to normal now that it was treated. I was wondering what I would try and do if I had a autoimmune disease. And I thought of how RA is treated, it’s not a cure I know but couldn’t a immunosuppressant help better your cfs/ME? I’m curious if anyones doctors put them on it and if it did anything. I had a second idea I would try, but y’all would think I’m insane. lol. Anyways I could be completely wrong on this, I just thought I would educate myself a little more on the chronic fatigue syndrome. Love y’all, and hope y’all are all doing good.
Hello all,
I'm joining the UC forum after being affected with UC for about a year and a half now. I was originally diagnosed with pancolitis (symptoms were annoying but from what I understand probably below average for UC: 4-5 stools a day, massive urgency in the morning, no pain, rarely blood). I was prescribed Mezavant and Prednisone and went into remission. My calprotectine was at 2,200 prior to going on medication.
I've now had some mild symptoms for a few months now - only 1-2 stools a day now, but they are sometimes loose, and I experience occasional (strong) fatigue/chills, though no blood, urgency, pain, etc. A second colonoscopy now shows that I only had inflammation in my rectum (and a little bit on the right side strangely, but no inflammation at all in between, in the tranverse colon). My calprotectine was at 150, so from what I understand it means minimal inflammation.
So from what I understand there is a little inflammation that I can't shake off. I thought the next step would be to try some suppositories, but my doctor wants me to go on stronger medication right away. I have been offered Azathiopurine or Entyvio. I am a little hesitant to jump on the big guns right away considering my case seems to have improved with maintenance medication and it feels like I just need a little temporary "booster" to kick out the rectal inflammation because my colon is clean in between. Obviously, this is not based on "objective" observations, but my situation has been stable for a few months now; I went to consult because though the symptoms were mild, they were nagging just enough for me to verify if something was up.
Thoughts ? I trust my doctor and I trust medical advice in general for sure, I just thought we were going a little fast and this causes a little anxiety.
Dunno about any of you lot, but I’m rather enjoying this super stylish new pandemic fashion of having an immune system that’s so piss weak(often combined with a mentality that’s equally piss weak) that you apparently shrivel up and die when exposed to the natural pathogens of this earth! Dreaded be the olden days when these fwagile lickle angels were either non existent, or chose to politely keep their mouths shut and not demand that the entire world cater to them and their alleged maladies. After all, it’s only thanks them that we have any fodder at all to justify prolonging this lunatic-style new world order. We MUST cripple the whole world in order to make them feel better!
But it’s not enough. Noooo, it just isn’t sufficient to insist that the whole world have a life that’s just as pathetic and void of any meaningful social interaction as these sick little angels and subject themselves to unwanted medical interventions for their benefit. I think we should go a step further. Just having a regular, healthy immune system that fights off normal pathogens and allows you to live a regular, productive life(in theory)is SOOO insulting to these hard-done-by cripples. Fascist, even. I therefore propose that we mandate that all ableist healthy people routinely ingest a pile of immune crippling drugs or be jailed for hate crimes against these weaklings. How DARE anybody be healthy when a few unfortunate souls were saddled with a tough plight in the immunity front!?!🤬
A week after using Elidel on my face, it seems like it’s calming.
Not 100% as I’m seeing it’s not sufficient to reduce the flakes on brows- as this might still need Azole, but definitely seems to help overall REDNESS on forehead and cheeks that has been inflamed for 5 months since I had SD from my Vaccine.
It seems my theory of Immune system triggered SD (as opposed to Fungal overgrowth) to be treated by Immunosupressants seem to work. Knock on wood it continues!
So if you’re SD was triggered by immune system stuff, you might find this useful!
FYI: I’m also on an elimination diet/ Low histamine/ Fodmap. I also did a GI Map to confirm I don’t have Yeast overgrowth in my Gut lining (no Candida).
Hey everybody, I was just wondering if any of you happen to be on immunosuppressants and if they have helped you at all with your CFS/ME?
I have a bit of a theory after going onto immunosuppressants for a week (due to extreme eczema) that they may be helpful, as this was one of the best weeks I’ve ever had, but a week isn’t quite long enough for me to sure and since my eczema has significantly cleared my GP refuses to prescribe them again. Thanks
Well the day to start biologics is coming. I’m in my early 20s, steroid resistant, and on Monday have a surprise meeting with the dr to discuss options. I really want to give entyvio a go, I’m curious how soon it started working for you guys? Also has anyone here had the surgery in their 20s? I’m completely over this shit and would like to just end it completely.
I’m 30f with RA, currently on my third month of hydroxychloroquine. I’m sure that in the future I’ll have to be on an immunosuppressant, and I’m wondering what people’s experiences are with that affecting their immune system for viruses, and how often they get sick now vs. before the immunosuppressant. I’m particularly worried about stomach bugs….I have major emetophobia and that’s a huge reason I’m terrified of immunosuppressants. Any insight would be much appreciated!!
Only in my 20s, too.
Feels like the back of my head is on fire.
They are going to do a CT scan just in case but I'm guessing it is probably shingles like the doctor here suggested it could be.
I 0/10 do not recommend shingles.
Edit: They said it is shingles coupled with an infection. They decided to not do a CT scan.
I want to learn the immunosuppresants section in Immunology but I always forget them . I never understood that part. Does someone have a good source for learning that, since it's not in sketchy.
I may be asking for a tall or impossible order, but I'd rather ask than wonder
Hey Docs!
I'm a 30 year old male, nonsmoker. 5'9" 185-190lbs athletic
My medical hx is basically just that I have Rheumatoid Arthritis. I took Sulfasalazine for a while, stopped and now I take Rinvoq (Upadacitinib). It's been managing my disease really well.
I have a picture here of the hyperpigmentation, it's on both legs on my inner thigh, initially I thought it was how a board short rash healed after taking my wife to Hawaii for vacation.
I'm somewhat concerned as there is more of it. I did have a dx of Lichen Planus some time ago (around 24 years old) around that area as well that is mostly subsided.
https://ibb.co/JCCdCk8
Would appreciate any insight. Wife and I are expecting a son and I'm trying to take care of my issues as much as I can before the little dude arrives!
I apologize if this has already been asked. I’ve had Crohn’s since I was 10. At the time, my GI dr said I shouldn’t get tattoos because it’s pretty much like having a bunch of small cuts that could get infected and being that my immune system is suppressed, they could easily get infected and could potentially cause bigger issues.
But I’ve seen people who have Crohn’s get tattoos.
So my question is, anyone here on long term immunosuppressant drugs and still getting or got tattoos with no issues?
I’m thinking about asking for oral immunosuppressants. Just wondering to what extent would they increase my risk of having a serious response to Covid? Would I have to stay at home all the time while Covid is still around if I take immunosuppressants? I’m double vaxxed btw
I work in a preschool for students with special needs. There is almost always at least one student who is sick and none of them have basic hygiene skills yet. For example, if they have a runny nose, they just wipe it across their face continuously throughout the day and then go and touch a bunch or things. Or some students stick their hands inside of their diapers. There are also a few who drool frequently throughout the day, so their saliva gets everywhere. And they don’t know yet to turn away from people when they cough or sneeze, so you will frequently have students cough or sneeze directly on you, often right on your face. These are just some examples of how unavoidably germy the environment that i work in is. The reason i’m asking is because i’m in the process of figuring out if i have an autoimmune disease. The specialist said that if i do have it, i will have to go in immunosuppressants. Can one continue to work in such a germy environment while on immunosuppressants? Or would i probably be sick ALL the time? As of now, i’ve only had one minor cold in the past nearly 5 years, so i’m otherwise very resistant to catching viruses despite working in such a germy environment.
Anybody have some anecdotes about the use of chaga, lion’s mane, reishi, turkey tail, etc in conjunction with their DMTs?
I’ve been drinking chaga for and cooking/eating different edible fungi for many years and will be starting Ocrevus tx soon.
Newly diagnosed, and with all the info exchange, I have yet to ask my doctor about this. Maybe I’ll have a medical answer come Monday.
I have hashimotos ( I supplement levothyroxine) and I am on immunosuppressants for another autoimmume disease (colitis). Does anyone know how this will affect my thyroid? Will my antibodies go down so I will hyper? Or hypo? Anyone with a similar condition or knowledge to share?
Hi all. I'm a 31 y/o female who has had Uveitis pretty regularly for nearly 4 years now to the point where I now have a cataract in my left eye. At my recent check-up at the Ophthalmologists he said he thinks it's about time I try immunosuppressants. I have a meeting/consultation type thing next week to talk about it, but I'm honestly scared. I don't know if I even wanna start taking immunosuppressants because I know what they can do to your body/organs and it sounds scary. Especially in times of Covid. But I'm also so sick of getting Uveitis and taking eye drops every month or so because it won't go away. I feel stuck about what to do, any advice about immunosuppressants and being on them would be great.
Update: I had my appointment (11th Nov) and the Ophthalmologist I saw this time said he thinks I don't need to go on immunosuppressants because I don't have any other auto-immune problems other than Uveitis and it's not "severe enough" to start taking these strong medications. So I'm basically just back at square one taking eye drops every few months, my cataract getting worse, and not knowing what else to do. Fun.
Hi guys my doctor prescribed Puri-Nethol(commonly used as a chemotherapy drug) to me as an immunosuppressant drug. I don't know if anyone else here has been taking it but it really make me feel sick...i took one pill every morning and I get side effects including nausea, decreased appetite and malaise. Would those side effects go away after a few weeks? I don't know how long i can bear with it...
TL;DR: I am sick all the time and am slowly losing my will to live
I’ve been on regular immunosuppressants for around six months. Obviously I get sick a lot more than I used to, but particularly during the last few months where lockdowns have ended in my country, I have been consistently ill. It’s like as soon as I get over one thing I get something else, be it colds, coughs, infections, etc. I currently have had back to back colds and coughs for what feels like forever. And I feel like I’m starting to lose my mind. Not to mention it is beginning to affect my study and work life. How am I supposed to cope with being sick all the time? Stopping or decreasing my medication isn’t really an option for me, but wow would I if I could. I don’t know how much more I can take.
I would be extremely grateful for any words of comfort or advice.
P.S. before anyone suggests it yes I am getting a flu vaccine
I have membranous nephropathy and I’m currently on lisinopril and diuretics. I briefly drank tacrolimus but stopped because the only reason why my doctor had me on it was because I was pregnant and couldn’t drink lisinopril while pregnant. I lost the baby in my 2nd trimester (literally 4 days after drinking the tacrolimus) so that’s why I stopped drinking it. But I have heard that a lot of people have good results after drinking immunosuppressants and was wondering what your experience has been and which one you’re currently on so I can do some research. I’ve read that Tacrolimus specifically isn’t great for kidney function and affects creatinine levels so I would like to know what you guys think about it and what has worked for you. Thanks in advance.
Question in title. I have been slathering tacrolimus and elidel and hydrocortisone for the majority of my life.
EDIT: I will probably wait the six months as my flares haven’t been bad super lately and I’m only on ointments and no longer on oral immunosuppressant medication.
Always been curious at scientific level. As tempting as it is, tempting to use latter options. But I’ve heard reviews with steroids and immunosuppressants having flare backs.
What’s the best to manage? Based on ur experience in way we won’t become reliant and dependent on?
Hi, long time AA patient here (16yrs). Been on a maintenance dose of cyclosporine and magnesium. Also have PNH too but just sticking with the AA for this question.
I take 100mg/day. For the magnesium, I grab any old generic supplement at the drug store. Has anyone had particular experiences with types and differing results with brands and formulations? I usually have to skip Mg for awhile before I get the shakes.
Has anyones insurance switched Cyclo manufacturers on them? I used to have a gel cap and now they're a hard pill and I swear I could tell a difference but saw little variance in counts.
How's long term Immunosuppressant therapy been working for you?
Always been curious if Steroids like fluocinonide only reduces inflammation but doesn’t actually kill the fungi. It goes away but the inflammation could come back.
Same with Tacrolimus immunosuppressants which I hear people use on SD. So often it comes back after and some become reliant on it.
Do they actually kill the fungi? Or it’s better to stick with Azoles to completely manage them? Want to understand the science behind it.
Does anyone take immunosuppressants while on remicade? My labs are showing some antibodies build up and my doc has mentioned this as an option. Just looking for others who may have some experience with this.
Hi fellow sibo warriors, I wonder if any of you had any experience getting rid of sibo while taking immunosuppressing medications, especially the biologics ones like Remicade and Humira? I will have to take these due to autoimmune diseases, which of course could be intrinsically linked to sibo in the very first place. I am worried that suppressing the immune system probably wouldn't do good to getting rid of those overgrown microbes in my gut since we need the immune system to eradicate them/prevent relapse?? Would love to see someone with a relevant experience chime in!
Not just on reddit, but seeing it all over IBD social medias. It's not a valid excuse. Just say you don't want the vax instead of making up shit that can be debunked in less than a minute.
