Aa
What do I do next ?
Today marks the 3rd day on prednisone and I feel well, I randomly get “shocks of pain”on knees that last about 3-5 seconds, other than that I feel fine :) it’s odd because 5 days ago I also started developing jaw pain on left side of cheek and felt a small lump was going to form (I thought it was my anxiety ) but now that pain is also gone and no lump formed. I still have slight pain on my lower left back but i can do my daily activities. I was able to do a UA everything came back normal no protein or blood :) , PH was 6.0 and SG 1.025. I am still pending the CT scan appointment, But am drinking teas and plenty of water and am hoping my body can get rid of this on its own. It’s okay I want to know what can happen having this stone? Even if it’s bad news :( In regards to protein, I used to buy the Costco vegan brand and when I started lifting I began with whey. I wanted to add that before all of this happened to me, the only new product I had introduced in my body was the creatine. what do you think? Can creatine contribute to erythema nodusm? Around that time I was having so many calf cramps, I would randomly wake up at 3 am due to the cramps. I no longer have them they went away completely once I stopped doing leg work outs. I’m really hoping I can one day put all this behind :( I view life so differently now, I appreciate the small things more than I ever have.
COMMUNITY LEADER
I'm glad to hear that everything's back on track and you are okay. If the hema upped your pred, then that should be kicking in by now, I'd think.
I'll write more later, but I'll remind you now that the EN is just the tip of the iceberg. You need some med to suppress your immune system. Now you have some breathing room for the hema to experiment to see what else will work.
I'll write more later, but I'll remind you now that the EN is just the tip of the iceberg. You need some med to suppress your immune system. Now you have some breathing room for the hema to experiment to see what else will work.
Hi, I honest did not read the whole thread but from what I did read it reminded me a lot of myself, please look into gluten intolerance. I am seeing amazing results going gluten free. If it helps you that would be great!
COMMUNITY LEADER
SG! I think you are a prednisone "hyper responder". Remember that term to discuss with your rheumy. Your symptoms get much much better, much faster and on a lower dose of pred than for other people.
I don't know why that would be, except maybe genetics. Did you find that you also responded that way to exercise? More progress and quicker than others do?
Maybe you are some kind of super specimen. :)
-I remember also that you had "symptomless" strep, which surprised the treating doc.
-Most people's EN goes away on its own, but yours doesn't because you have a super immune system, even when you want it to be less.
-Most people wouldn't have had pred withdrawal on the usual taper schedule, but you did. (That was not the doc's mistake.)
-I think your withdrawal was getting more serious than usual.
----You had lupus/not-lupus, which went away on its own for around ten years. That is rare.
Later, I'm going to reread everything you wrote.
Can you tell more about which topical from the derma made the bumps worse, and anything else you think is relevant. Was the skin worsened?
I don't know why that would be, except maybe genetics. Did you find that you also responded that way to exercise? More progress and quicker than others do?
Maybe you are some kind of super specimen. :)
-I remember also that you had "symptomless" strep, which surprised the treating doc.
-Most people's EN goes away on its own, but yours doesn't because you have a super immune system, even when you want it to be less.
-Most people wouldn't have had pred withdrawal on the usual taper schedule, but you did. (That was not the doc's mistake.)
-I think your withdrawal was getting more serious than usual.
----You had lupus/not-lupus, which went away on its own for around ten years. That is rare.
Later, I'm going to reread everything you wrote.
Can you tell more about which topical from the derma made the bumps worse, and anything else you think is relevant. Was the skin worsened?
1 Comments
-Plus early onset for the lupus/not-lupus.
Yes thank you ken I’m doing okay again, the nodules are almost gone and that’s with 5 mg of prednisone. Thank you for your concerns :)
Thank you
Thank you
Thank you ken I ended up calling my rheumatologist she’s keeping me on the prednisone for another month. And wants me to continue on the steroid cream the derm prescribed, she’s going to do more labs on me to. Thank you so much, I won’t hesitate to go to the ER if my symptoms persist though. Thank you ken for hearing me out.
COMMUNITY LEADER
Please let me know once you are okay. Then we can talk about the other stuff.
COMMUNITY LEADER
SG, PAY CLOSE ATTENTION: If you are worse this morning then GO STRAIGHT TO THE ER. Have somebody else drive you. You might even pass out. Do not fool around with this. Do not try to tough it out. You are having BAD prednisone withdrawal.
If you are any better this morning, then call the rheumy immediately. You are close to having a medical emergency. Whoever answers the phone, tell them you are having worsening symptoms of prednisone withdrawal. DO NOT LET THEM SAY THEY WILL CALL YOU BACK. Hopefully the rheumy will say to take more of your remaining pred tablets right away. If you have 1mg tablets, she might say to take two of them.
Or else GO STRAIGHT TO THE ER. Have somebody else drive you. You might even pass out. Do not fool around with this. Do not try to tough it out.
If you get worse you might even need IV steroids. PLEASE DO NOT TAKE THIS LIGHTLY. Do not let yourself be alone, someone needs to be with you in case you pass out.
The leg bumps don't matter right now. All that matters right now is this below:
"I feel so exhausted ken :,( I feel dozed off all the time now. And even my family is noticing and I’m becoming more forgetful. I feel like I’m dieing, like it’s a matter of time before it’s to late for me."
If you are any better this morning, then call the rheumy immediately. You are close to having a medical emergency. Whoever answers the phone, tell them you are having worsening symptoms of prednisone withdrawal. DO NOT LET THEM SAY THEY WILL CALL YOU BACK. Hopefully the rheumy will say to take more of your remaining pred tablets right away. If you have 1mg tablets, she might say to take two of them.
Or else GO STRAIGHT TO THE ER. Have somebody else drive you. You might even pass out. Do not fool around with this. Do not try to tough it out.
If you get worse you might even need IV steroids. PLEASE DO NOT TAKE THIS LIGHTLY. Do not let yourself be alone, someone needs to be with you in case you pass out.
The leg bumps don't matter right now. All that matters right now is this below:
"I feel so exhausted ken :,( I feel dozed off all the time now. And even my family is noticing and I’m becoming more forgetful. I feel like I’m dieing, like it’s a matter of time before it’s to late for me."
I’ve noticed the tacrolimus is actually making one of my nodules more inflamed, its a flat nodule, red, and very big in size. I can’t even walk without it bothering me,all I want to do is jump back into my prednisone and never come off of it :’( I wanted to give these new cremes and ointments a try before calling my rheumy but I think tomorrow I’m calling her to get me in sooner and see if we can work something out or have a different med similar to prednisone. I feel so exhausted ken :,( I feel dozed off all the time now. And even my family is noticing and I’m becoming more forgetful. I feel like I’m dieing, like it’s a matter of time before it’s to late for me. :(
My derm prescribed me an ointment and a cream they are called “clobetasol” and “tacrolimus” . I thought she would prescribe tablet medications but I misunderstood. She stated that one of these is carcinogenic, and is known to cause lymphoma. But she said to not worry about that, because it’s in very small amount and will have no effect. I’m still worried though, what do you think about this . Are you familiar with these prescriptions?I guess my rheumatologist thought my body was ready to let go of the prednisone, and I thought so to. I have a weeks worth of prednisone, I’m noticing that my upper arms and hips are starting to itch, so many odd things are going on with me ken. I feel like just quitting everything and running away idk how to explain how I feel.
COMMUNITY LEADER
I'll send a PM about which Mg at Amazon. Probably magnesium citrate.
COMMUNITY LEADER
"My derm did prescribe me new meds, and am still waiting on them"
SG, I remember you'd said that, but you didn't specify which two meds. What are they? Why do you have to wait???
It's unbelievable to me that the doc stopped the pred and you are left with nothing in between while you wait. You really should call that office this morning, don't delay. Tell them to do something. Maybe they even have samples there to tide you over. Or they could write a prescription for 5 tablets or something.
The whole point is that you need some med to suppress your immune system. Without that, of course the symptoms get worse.
There was a point in the past where we hoped you might get better on your own. But it turned out that wasn't going to happen. So you need immune suppressing meds to control your symptoms. It's unfathomable how you were left with nothing, they should have at least kept the pred going for a little while longer... You shouldn't have been left to just get worse. Don't you feel like you were abandoned?
SG, I remember you'd said that, but you didn't specify which two meds. What are they? Why do you have to wait???
It's unbelievable to me that the doc stopped the pred and you are left with nothing in between while you wait. You really should call that office this morning, don't delay. Tell them to do something. Maybe they even have samples there to tide you over. Or they could write a prescription for 5 tablets or something.
The whole point is that you need some med to suppress your immune system. Without that, of course the symptoms get worse.
There was a point in the past where we hoped you might get better on your own. But it turned out that wasn't going to happen. So you need immune suppressing meds to control your symptoms. It's unfathomable how you were left with nothing, they should have at least kept the pred going for a little while longer... You shouldn't have been left to just get worse. Don't you feel like you were abandoned?
Thank you ken,
My derm did prescribe me new meds, and am still waiting on them. I have a lump on the front of my right shin, and I feel that the area surrounding it is swelling up. I feel less anxious hearing about what to expect at the oncology office. Just seeing my legs, the bruising and how they are, just makes me think the worse. But I’m trying to stay calm, I have been under a lot of stress with my job due to understaffing issues, and as much I as I would love to quit to rest and stay in bed, I’ll lose my insurance and have a very hard time to get this treated. Sometimes I just cry in my car, before coming home, my life is at pause. I remember when I was 21, full of dreams, a healthy girl. And I ask myself, what happened ? Life is so fragile ken, soo unpredictable. When these lumps come they are sooo painfull, my body feels exhausted. I was searching up chronic EN and also came across a condition called vasculitis ? Have you came across this ? Can I find a good brand of mg on Amazon ?
My derm did prescribe me new meds, and am still waiting on them. I have a lump on the front of my right shin, and I feel that the area surrounding it is swelling up. I feel less anxious hearing about what to expect at the oncology office. Just seeing my legs, the bruising and how they are, just makes me think the worse. But I’m trying to stay calm, I have been under a lot of stress with my job due to understaffing issues, and as much I as I would love to quit to rest and stay in bed, I’ll lose my insurance and have a very hard time to get this treated. Sometimes I just cry in my car, before coming home, my life is at pause. I remember when I was 21, full of dreams, a healthy girl. And I ask myself, what happened ? Life is so fragile ken, soo unpredictable. When these lumps come they are sooo painfull, my body feels exhausted. I was searching up chronic EN and also came across a condition called vasculitis ? Have you came across this ? Can I find a good brand of mg on Amazon ?
COMMUNITY LEADER
Hi, SG. Allow me to point out that everything is going is expected. Pred, being a powerful anti-inflammatory, did wonders - but you shouldn't stay on that for long unless absolutely necessary. So while the pred was successful, it's time to try another anti-inflammatory/immune-suppressant.
You have a good doc, some others would just give up on trying to find the cause. So a 2nd opinion is good. But probably will end the same: you have a mystery immune condition, something like lupus that isn't exactly lupus. The good news is it does get better with anti-inflammatory treatment, even if it doesn't have a name.
It's valid that you want to see an oncologist to set your mind somewhat at ease. Let's imagine how they might think: the lesions on your legs were biopsied and they were not-cancer. So what to look at next? Well, they might possibly maybe have a pathologist use a microscope to look at blood cells. In a blood cancer, the cells look odd. Yours won't look odd.
And/or they would want a scan of the knee to look for a bone cancer - but if I remember correctly, that was done already. The onc will conclude that you don't have any cancer, so that's what to look forward to while you wait for the appt.
From the past: "...so many calf cramps"
Had I mentioned to try magnesium for the cramps? Mg is also known as the calming mineral, maybe it will help that way as well - especially before sleep. Just not Mg oxide, which is very poorly absorbed. And otherwise not big doses, which are very laxative.
You have a good doc, some others would just give up on trying to find the cause. So a 2nd opinion is good. But probably will end the same: you have a mystery immune condition, something like lupus that isn't exactly lupus. The good news is it does get better with anti-inflammatory treatment, even if it doesn't have a name.
It's valid that you want to see an oncologist to set your mind somewhat at ease. Let's imagine how they might think: the lesions on your legs were biopsied and they were not-cancer. So what to look at next? Well, they might possibly maybe have a pathologist use a microscope to look at blood cells. In a blood cancer, the cells look odd. Yours won't look odd.
And/or they would want a scan of the knee to look for a bone cancer - but if I remember correctly, that was done already. The onc will conclude that you don't have any cancer, so that's what to look forward to while you wait for the appt.
From the past: "...so many calf cramps"
Had I mentioned to try magnesium for the cramps? Mg is also known as the calming mineral, maybe it will help that way as well - especially before sleep. Just not Mg oxide, which is very poorly absorbed. And otherwise not big doses, which are very laxative.
Hi ken,
I just came out of my dermatologist apt, she’s telling that I should get a 2nd opinion at a university in LA. She’s prescribing me different medications that are anti inflammatory that can help with my condition, she also wants me to come off of prednisone already. I told her If she can refer me to oncology. I just can’t sleep at times, fearing the worse and anxiety is getting the best of me :( I’m just sad that, we can’t figure out what’s happening to my body.
I just came out of my dermatologist apt, she’s telling that I should get a 2nd opinion at a university in LA. She’s prescribing me different medications that are anti inflammatory that can help with my condition, she also wants me to come off of prednisone already. I told her If she can refer me to oncology. I just can’t sleep at times, fearing the worse and anxiety is getting the best of me :( I’m just sad that, we can’t figure out what’s happening to my body.
COMMUNITY LEADER
Oh, and on rereading yout first post, I saw that your knee was x-rayed fairly recently. So they might not want to do it again. It's not really necessary.
Let me add that if there was a cancer, it wouldn't have gone away so well with just a small dose of pred. However, that is exactly how an inflammatory condition would react to the pred.
Let me add that if there was a cancer, it wouldn't have gone away so well with just a small dose of pred. However, that is exactly how an inflammatory condition would react to the pred.
COMMUNITY LEADER
"All I know is that the pain in my legs keeps reminding me that there’s something wrong inside of me :( "
That is insightful, SG. Yes, the "something wrong" is a chronic inflammatory condition, but it's not any typical type. Being atypical is important, because then it's not easy to classify you.
I just reread your first post. Let's review things.
In your early years, you had something like lupus; then it eventually went away. Your pattern is that it gets better. But eventually comes back - that's called recurrence.
That lupus-like problem is the underlying thing. Meanwhile, the EN is the very visible tip of the iceberg. But all the symptoms tie in together. They're all inflammatory symptoms. Since pred is a powerful anti-inflammatory, it helps across the board. Unfortunately, when the pred dose got too low, the symptoms started to return. The pred wasn't a cure, but it did alleviate the symptoms because it reduced inflammation bodywide (including the jaw).
Factors like stress and/or strep can stir up the immune system and make symptoms worse.
It's very good that you were doing all the anti-inflammatory things, don't stop those. Unfortunately, they weren't enough. So the doc might add in another anti-inflammatory med, maybe colchicine - then resume tapering the pred.
Or maybe the strep is back, so you need more antibiotic.
Your goal is to beat back the symptoms yet once again, then prevent future recurrences. You've demonstrated through the years that you can be very determined. You are going to win this.
That is insightful, SG. Yes, the "something wrong" is a chronic inflammatory condition, but it's not any typical type. Being atypical is important, because then it's not easy to classify you.
I just reread your first post. Let's review things.
In your early years, you had something like lupus; then it eventually went away. Your pattern is that it gets better. But eventually comes back - that's called recurrence.
That lupus-like problem is the underlying thing. Meanwhile, the EN is the very visible tip of the iceberg. But all the symptoms tie in together. They're all inflammatory symptoms. Since pred is a powerful anti-inflammatory, it helps across the board. Unfortunately, when the pred dose got too low, the symptoms started to return. The pred wasn't a cure, but it did alleviate the symptoms because it reduced inflammation bodywide (including the jaw).
Factors like stress and/or strep can stir up the immune system and make symptoms worse.
It's very good that you were doing all the anti-inflammatory things, don't stop those. Unfortunately, they weren't enough. So the doc might add in another anti-inflammatory med, maybe colchicine - then resume tapering the pred.
Or maybe the strep is back, so you need more antibiotic.
Your goal is to beat back the symptoms yet once again, then prevent future recurrences. You've demonstrated through the years that you can be very determined. You are going to win this.
COMMUNITY LEADER
"the EN is back again why?"
Good morning, SG. First off, if it was me I'd immediately get on the phone to the rheumy and say you want to up the pred dose, to control the symptoms while the next step gets figured out. (More on the next steps later.)
What is the dose now? 1 or 2 mg? A little higher dose for a little while longer shouldn't cause bad side effects.
Nope, it's not reasonable to jump to thinking of cancer. BUT you can also ask to have a quick and simple plain x-ray of the knee, to set your mind at ease. I'd think you can get that x-ray appt quicker than for a CT or MRI. If the rheumy won't order it, maybe your GP would.
Tell any doc that you are very stressed because of thinking about a possible cancer -- and you think the immense stress might be causing your immune system to run wild, and so you need the scan to calm down.
Good morning, SG. First off, if it was me I'd immediately get on the phone to the rheumy and say you want to up the pred dose, to control the symptoms while the next step gets figured out. (More on the next steps later.)
What is the dose now? 1 or 2 mg? A little higher dose for a little while longer shouldn't cause bad side effects.
Nope, it's not reasonable to jump to thinking of cancer. BUT you can also ask to have a quick and simple plain x-ray of the knee, to set your mind at ease. I'd think you can get that x-ray appt quicker than for a CT or MRI. If the rheumy won't order it, maybe your GP would.
Tell any doc that you are very stressed because of thinking about a possible cancer -- and you think the immense stress might be causing your immune system to run wild, and so you need the scan to calm down.
Hi ken,
So my rheumatologist slowly wanted to take me off of the prednisone. And it’s not going so well for me :( the EN is back again why? :,(I could feel my right knee wanting to hurt again. But the prednisone is one hell of a drug even taking a very very small dosage, it minimizes the pain as soon as I take it. I don’t understand what’s wrong, I fasted for 2 days. I’m keeping myself healthy in regards to my diet, and I’m trying to stay active without lifting. Im scared that this is some type of cancer hiding, I try to stay positive but I’m so confused. My jaw feels as if it’s starting to swell and 2 very small lumps are forming. Idk what to do anymore, or where to go? I feel so alone and depressed. I feel like I’m fighting against time, like I’m fighting against something unknown, it’s hard to explain. All I know is that the pain in my legs keeps reminding me that there’s something wrong inside of me :(
So my rheumatologist slowly wanted to take me off of the prednisone. And it’s not going so well for me :( the EN is back again why? :,(I could feel my right knee wanting to hurt again. But the prednisone is one hell of a drug even taking a very very small dosage, it minimizes the pain as soon as I take it. I don’t understand what’s wrong, I fasted for 2 days. I’m keeping myself healthy in regards to my diet, and I’m trying to stay active without lifting. Im scared that this is some type of cancer hiding, I try to stay positive but I’m so confused. My jaw feels as if it’s starting to swell and 2 very small lumps are forming. Idk what to do anymore, or where to go? I feel so alone and depressed. I feel like I’m fighting against time, like I’m fighting against something unknown, it’s hard to explain. All I know is that the pain in my legs keeps reminding me that there’s something wrong inside of me :(
COMMUNITY LEADER
As for the knee? Maybe there was damage to connective tissue that a takes a little longer to heal. The big big thing is that you're not making it worse and worse. The body is always trying every moment to heal itself. By keeping your system-wide inflammation low, the body can proceed to heal itself.
I wouldn't try for any PRs right now, either :)
I wouldn't try for any PRs right now, either :)
COMMUNITY LEADER
"Since I’m 30 and I haven’t had a baby, can it be my body needs me to get pregnant ? Haha"
LOL x2. That is the most original joke anybody has said on Medhelp, ever :)
But tell you what: I'd ask that good doc to test your hormone levels, since you also do have pronounced pre-menstrual symptoms. You should be tested on your worst day, not just on any old day.
"BUT it seems like we’re back to square one"
For now, if you just go back as if this never happened, then the bad will probaly re-occur when your stress is high and other pro-inflammatry factors are high.
So make it your lifelong hobby to be as anti-inflammatory as possible, since you are prone to overly-inflammatory reactions. Like you were recently, plus also back when you were little.
If you can use the same motivation and dedication in that as you did with the weightlifting, you will be a champ of anti-inflammatoriness :)
"And in regards to me fasting for 2 days ? Would that help me revamp my body? I’ve done something similar in the past and it honestly did make a huge difference."
Then that sure seems to be your body telling you that it's good for you. I'd personally continue with it, just not to an extreme. Only you can know how much is too much and how much is too little.
By all means please keep me updated. I'd like to hear all your good news.
Also write at any time if you want to talk about strategies for being anti-inflammatory. It's not a simple thing.
LOL x2. That is the most original joke anybody has said on Medhelp, ever :)
But tell you what: I'd ask that good doc to test your hormone levels, since you also do have pronounced pre-menstrual symptoms. You should be tested on your worst day, not just on any old day.
"BUT it seems like we’re back to square one"
For now, if you just go back as if this never happened, then the bad will probaly re-occur when your stress is high and other pro-inflammatry factors are high.
So make it your lifelong hobby to be as anti-inflammatory as possible, since you are prone to overly-inflammatory reactions. Like you were recently, plus also back when you were little.
If you can use the same motivation and dedication in that as you did with the weightlifting, you will be a champ of anti-inflammatoriness :)
"And in regards to me fasting for 2 days ? Would that help me revamp my body? I’ve done something similar in the past and it honestly did make a huge difference."
Then that sure seems to be your body telling you that it's good for you. I'd personally continue with it, just not to an extreme. Only you can know how much is too much and how much is too little.
By all means please keep me updated. I'd like to hear all your good news.
Also write at any time if you want to talk about strategies for being anti-inflammatory. It's not a simple thing.
Hi ken, so I seen my rheumatologist again, before the visit she did all sorts of labs she did so many tests on me, and the good news is EVERYTHING came back normal, which is good. BUT it seems like we’re back to square one, she is still keeping me on the prednisone but a very very low dosage, and slowly I will come off of it. She says she wants to see how I do when I’m completely off of it, and is hoping the erythema nodusm doesn’t come back. She says she thinks it might have been the strep that caused it, but doesn’t know exactly. Since all my tests came back negative, what is my next step. I no longer have the knee pain, it comes every other day probably a 3/10 pain, which is almost none but still there. I did research some of the lupus rash, it doesn’t really look like the break outs I get before my period. Once my period starts 2 to 3 days I clear completely up, even my mood changes. It’s like I’m a complete different person, I didn’t use to be like this. Since I’m 30 and I haven’t had a baby, can it be my body needs me to get pregnant ? Haha And in regards to me fasting for 2 days ? Would that help me revamp my body? I’ve done something similar in the past and it honestly did make a huge difference.
COMMUNITY LEADER
Thanks, I liked seeing your update.
"Is my body trying to tell me something? Can this also be related to erythema nodusm?"
Oh yes, hormones can be very much involved. E.g., mystery immune conditions affect more women than men by far, and lupus affects mostly women of childbearing age. On the other hand, I've seen women with bad lifelong conditions get much improved during actual pregnancy.
"I also break out in my face, really bad"
Find a dozen photos of lupus butterfly rash and see if you match that. That's important.
"I’m not myself. I feel numb, and Extremely angry and sensitive"
Bodywide inflammation can affect the brain, especially moods. Prednisone by itself also affects mood. Are you better or worse on the pred?
"i no longer have the lumps in my legs and I’m currently still on the prednisone."
Inflammation can be a self sustaining vicious cycle. What we want to hope for is that the pred has broken that cycle and you can remain being somewhat good once you taper off the pred. You can help those chances by doing the anti inflammatory everyday things. E.g., taking vit D is cheap, not dangerous and not difficult, so it's worth a try. Fasting for 24 hours might not be easy, but imagine if you feel really good after 20 hours or so - that'd be a valuable clue.
"Is my body trying to tell me something? Can this also be related to erythema nodusm?"
Oh yes, hormones can be very much involved. E.g., mystery immune conditions affect more women than men by far, and lupus affects mostly women of childbearing age. On the other hand, I've seen women with bad lifelong conditions get much improved during actual pregnancy.
"I also break out in my face, really bad"
Find a dozen photos of lupus butterfly rash and see if you match that. That's important.
"I’m not myself. I feel numb, and Extremely angry and sensitive"
Bodywide inflammation can affect the brain, especially moods. Prednisone by itself also affects mood. Are you better or worse on the pred?
"i no longer have the lumps in my legs and I’m currently still on the prednisone."
Inflammation can be a self sustaining vicious cycle. What we want to hope for is that the pred has broken that cycle and you can remain being somewhat good once you taper off the pred. You can help those chances by doing the anti inflammatory everyday things. E.g., taking vit D is cheap, not dangerous and not difficult, so it's worth a try. Fasting for 24 hours might not be easy, but imagine if you feel really good after 20 hours or so - that'd be a valuable clue.
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is it working well?
tacrolimus is an immune system suppressant.
"she said to not worry about that, because it’s in very small amount and will have no effect"
true
"my rheumatologist thought my body was ready to let go of the prednisone"
It was worth a try, but unfortunately didn't turn out. Contact the rheumy and tell what is happening. They might up the dose or Rx another med. Don't let yourself slide down into a bad state.
"so many odd things are going on with me ken"
It's all the same thing, SG. Just in different places and with different "manifestations". But it's all your immune system.