"have you ever came across a case like mine ?"
Shortly after beginning to read your initial post, I knew this would be about a "mystery immune system condition". All the signs of that are present. Saying that it's an "inflammatory condition" is pretty much a synonym, since it is the immune system that produces inflammation.
Prednisone is a very powerful anti-inflammatory. But it has lots of bad side effects when taken over a long time. It's not a cure, because it doesn't fix the underlying cause; but it can reduce symptoms a lot. Make sure that you tell every doc about how much the pred helped you. That helps them to understand what is going in you individually.
You can call the doc that prescribed the pred and say you want more FOR NOW because without it the pain is so bad. If you do that, then ask me here how to change your eating to minimize blood sugar effects and other bad effects. Pred should be temporary.
Prednisone is not a pain reliever. But it can reduce pain because it reduces the inflammation which causes pain. I believe that you have an overactive immune system. That means that your inflammation will be stronger than for the average person; and it also means your immune system might run amok and produce inflammation when it shouldn't. In your case, you had the strep and then your immune system reacted to kill the strep. The strep bacteria are the bad guys. But then your immune system went on further to wrongly attack your knees, because some molecule in the knees looks somewhat like the bad guys. That's "auto-immune". Then the pred tells your immune system to calm way down and stop attacking all over the place.
We can also look at erythema nodusum as something like an allergy. Please tell me why you had also posted under the Allergy forum. Is it you or maybe a close relative that has bad allergies?
Any family history of unusual immune conditions like Lupus or Sjogrens or Rheumatoid Arthritis or Raynaud's etc.?
=========simple answer=========
Hi, since you're really scared, I'll take more than a little time on this. But I see no reason to suspect cancer.
=====reasons to not suspect cancer=====
Having low Hgb from a blood cancer results when a lot of cancer cells are in the bone marrow and they 'crowd out' the normal production of blood cells there. It would be rare that *only* red blood cell production is affected, you would instead be low in white cells and probably platelets as well.
"red lump on my thigh... a lipoma"
Lipomas being red? I'd guess not. But lipomas involve fat cells, just like EN does.
"red lump on my thigh... went away on its own"
Cancer is very, very unlikely to do that. So we instead should think of something inflammatory. Why? Because most mystery conditions turn out to be inflammatory, and that also fits with going away on its own.
"in the begining of October 2022 I suddenly had around 6 red lumps in my calf’s"
Cancer shouldn't behave like that, popping up suddenly (like overnight) in various places.
"The dermatologist did a biopsy"
Great, and no cancer cells were found.
=====not simple thoughts==========
Erythema nodusum is not well understood yet. But it's very likely to NOT be a serious thing.
Yes, joints can be affected with EN:
https://www.cedars-sinai.org/health-library/diseases-and-conditions/e/erythema-nodosum.html
Let's look for any association between Erythema nodusum and anemia. There is, here's a case report:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5878323/
There could be lots of different causes for the EN, including the strep or antibiotic.
Or from a Covid vax:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8958097/
Also, regarding: "Ive had a CBC w/dif, ESR, INFLAMMATORY MARKERS,ANA W/dif, C-REACTIVE PROTEIN TESTS DONE in which everything came back normal."
But that doesn't mean there is no inflammation. Inflammation is not just one single thing. Other tests can be for different inflammatory markers like TNF or interleukins, e.g.
===========what to do=============
"some slight knee pain plus heel pain... thinking it was probably due to my heavy workouts"
Yes, but also involving some inflammatory condition that predisposed you. So I'd stop doing deads and squats for now, so that you won't damage joint connective tissue permanently.
Otherwise, just wait for results of the other testing.
Or even try taking B12. As in that same study as above:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5878323/
Good luck.
Today marks the 3rd day on prednisone and I feel well, I randomly get “pain shocks” on knees that last about 3 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, 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’ve had so much anxiety and I try not to tell my family anything. Not till I know what exactly this is, I don’t want to bring them along..."
Well, that's how I would be, too. That's courageous of you. If I do say so myself :)
"How much water do you drink ?"
As needed, but "when thirsty" is not enough.
Let me mention the often said "8 x 8 glasses per day". That's just dumb. If I'm 200lbs and somebody else is 100, we need the same? If I'm outdoors all day in summer and they're in an air conditioned office, we need the same? I mention all this to point out that common advice is often way off the mark.
But for you? More than average water is needed. Kidney stones usually form because minerals and other things precipitate out and collect in a stone. Therefore you should never have dark urine. More so, we get back (as always) to your inflammation which means you should be flushing kidneys all the time. But not too much, else you get low on minerals. Yep, nothing is simple.
"And what type of whey do you take ? "
Mostly concentrate. I look mostly at the cost per gram, and trying to assess if the company is honest on their label claims. E.g. as a famous case, celebrity Arnold's was ridiculously overpriced to begin with, then they were found out by assay to be lying on the protein content. Geesh.
It all starts as wholesale whey by the ton. Just like all gasoline goes through the same pipeline, then each company puts in their own additives or not - plus marketing campaigns. Whey from grass fed cows that spend their days at exclusive spas sipping organic kambucha? Hahaaa. No benefit. It's food, not a magic potion. How about you?
I'll reply about the pred in a day or two, once it has taken effect.
"im going to have to make several sacrifices during these holidays :( "
Let me suggest that if you see it as a burden, then you'll give up eventually. That's human nature. But if you see it as a wonderful chance to prevent bad things for the rest of your life, then you can be more relentless - like with the lifting.
It's good that you took a day off. Rest and sleep are two BIG goals for you.
I'll answer on this thread today. Please start a new one, so we can find replies easier. Post your responses to that new one.
Lots of speculation follows intermingled.
"She really is, sending so many blessings her way."
Hopefully she finds you to be "an interesting case". Yes, she does seem oriented that way so far.
Because merely going by the book (as previous docs did) is not good enough for you. You need understanding as to the **WHY** on most every aspect of your case. Because you are likely to turn out "atypical" along the way. Which actually is good, because it means you probably won't be severe and can still reverse most every bad thing.
"She also asked me about birth control (never been on birth control)"
Because birth control can create clotting even at your age. That can mimic EN patches, and worse yet create worry about a Deep Vein Thrombosis. But that's not you, I'm portraying the *why*.
"antibiotics( started amoxicillin after the erythema nodusm with the positive aso)"
Because EN (nodosum not nodusm) can typically be triggered by drugs esp amoxicillin. But not in your case this time.
"She kept listening to my heart and listening to my lungs"
Remember that, as motivation.
"I guess I have 1 month to see how my labs will turn out and go from there"
Well no, you should begin striving every day. To be anti-inflammatory. Starting today, step by step and not necessarily all at once
Imagine you become 100% well tomorrow. Then you might just put all this behind you. It would eventually return. I don't want to be pessimistic, I'm trying to give motivation. To change. Yes, you certainly should at times put things away for a day or for a night's restorative sleep, but not put away long term.
"About my stone on my left kidney, it’s 1 cm is that bad ?"
That's mid sized. Sort of early onset though. UNLESS we factor in that it's your tendency to inflammation that created it. Therefore, once you get to be anti-inflammatory, it might just little by little be dissolved.
We have to wonder why is it so painful though? The bad bad pain typically comes when smaller ones try to pass out through the ureters (outlet tubes). But OTOH when any tissue is inflamed, it tends to easily get painful. Think of a sprained ankle, e.g.
Speaking of labs, you can always buy OTC test strips for protein in urine. Maybe $10.
I'm kind of walking a tightrope here. I think you should be aware of bad things that *might* happen, but without me provoking severe worry. What's your thinking on that?
Protein in urine is a bad thing. It would show up as frothy urine. Think of using a blender on a bowl of plain water, then on the same bowl but with some egg white added.
Test strips would show protein long before the frothiness and bubbles show.
Ph urine test strips are cheap on eBay. You want to be alkaline, since acidity tends toward inflammation. Taking in lots of potassium is a good strategy. From food or potassium citrate supplements. Tablets or powder.
If you take creatine, then that will artificially raise your blood levels of creatinine - but that's harmless. Meanwhile, high creatinine is a marker for kidneys not being right. So don't get alarmed if your creatinine is high.
I think you have reason to be optimistic, especially if the pred helps a lot and quickly.
I'm going to mull over everything. Including the bone pain.
And ohhh, there are food things you can take to try to minimize calcium absorption. Phytates (e.g. beans), oxylates, tannins (tea). That's IF you have the calcium kind. But if it's uric acid, she'll prolly go right to something like the Rx allopurinol.
I usually have a lot of whey myself.
I think you deserve a break from thinking for a short while. You absorbed a very lot in a short time.
"The rheumatologist just called me..."
Wow, that's impressive. She's dedicated. She's a valuable asset to you now.
"naproxen"
pain killer and anti-inflammatory. Like ibuprofen.
"She kept asking me about my ASO being positive and seems confused as to why I never had any type of symptoms like a runny nose or sore throat."
Yep, like I'd said: a benefit of a hyperactive immune system :) You defeat invaders before they can take hold.
We don't want her to be thinking that you had a false positive ASO test, btw.
"She’s not to sure about lupus, she says that I’m not showing characteristics of it."
Returning to that: I don't think that's so relevant, except as to what meds would get prescribed.
Let's say that you have an "atypical" lupus. It might be very mild compared to the usual case. Immune system dysfunction doesn't necessarily fall easily into distinct categories, though doctors do make up distinct categories because they have to. Or let's say that you have something very similar to lupus, but it's not lupus. Ofetn there is what's called "overlapping" of symptoms between different diseases.
She didn't mention sarcoidosis? Maybe she wanted to rule that out with the chest x-ray. That's also why I'd asked abiut your breathing.
Sarcoidosis is a... wait for it... a mystery immune condition. It involves a hyperactive immune system running amok. But, you probably don't have that.
"Let’s say my labs come back negative for lupus, what next ?"
We focus as always on you having a hyperactive immune system running amok. We aim to reduce systemic inflammation as always.
"I might have a possible kidney stone on my left side where I’m having pain?"
Ahaa! So that's good in a way. Because it's a simple answer, and it's likely sort of a side issue. We just want to keep that from getting more/bigger.
"Can this be due to me drinking various protein shakes and creatine in the last months when I was working out ?"
I doubt that very much.
"I’ve never had this, it is painful. Can this be confused with something else ?"
It can be one of the worst pains possible.
There are two types, we need to know which type: calcium or uric acid stones. Treatment is different.
----------------
BUT then, getting back to Occam's Razor: calcium deposits can occur from inflammation. So maybe that's how it ties in to the overall picture. And whey has lots of calcium. More on this angle later.
Plaquenil acts as an anti-inflammatory. It's the famous hydroxychloroquine that was unfairly attacked by establishment medicine for two years. It is safe, and that might be Rx'ed again after the steroid or instead of the steroid. It can be taken long term without a whole lot of risk, as opposed to the pred which has many known bad effects long term. But I'd bet the pred will reduce the back pain quickly and powerfully in the *short* term.
I hope you're not so sad anymore. :) Good luck tomorrow.
Btw, I didn't mean to minimize your experience with the previous docs, when you'd said you didn't think they knew what they were doing. You were there and I was not.
" I don’t think I ever had this type of pain that I’m facing now ever."
It's logical to first assume that the cause of your back pain is the same as the cause of your joint pain. Generalized/systemic inflammation. This is an important logical principle of diagnosing and it's called Occam's Razor.
"These past months I’ve been trying to gain muscle, my calorie intake was alot more than the usual. Can that also have been a factor."
Probably not, unless you were storing a lot of belly fat. I get the idea that you are thin though.
And referring back to the erythema nodosum, we should regard that as being a sign that there is systemic inflammation going on from some as yet unknown cause. You have a history of that since childhood. The stress and lack of sleep exacerbate things, but they are not the fundamental cause. There is also a genetic component.
The rheumy will likely see their task as to control the inflammation and thereby relieve symptoms. say that I want another short course of pred, since that worked so devastatingly well. Then after that something else. Most rheumys prolly don't care about any talk of ginger and exercise and all that.
"tests for organ damage"
Probably for starters, tests like the common 3 that are done with yearly physicals: creatinine, BUN and GFR. If they are bad, which I don't think they are, then a scan and then biopsy.
(Maybe a urine test, but you don't have dark or red or foamy urine, or little output, right?)
https://www.kidney.org/atoz/content/kidneytests
Same approach for liver, the commonplace ALT and AST for starters.
Lower back pain can be from kidney, but I don't think that would usually be one sided.
You can tell the doc if the pain seems to be in the muscle or not. Tell the doc you were doing the barbell.
Your eyes are bright white and with clear vision and no jerky movements, right?
I sincerely think you'll be good on all of the above. So don't worry about this all night.
IIRC, the ANA test whether direct or reflex
measures a whole hodgepodge of antibodies together. But the 'ANA panel' measures certain subtypes individually. E.g., one is anti-dsDNA for antibodies against double stranded DNA.
DNA is in the nucleus, hence the name ANA = Anti NUCLEAR antibodies.
"I went untreated for 8 years with no meds."
What meds have you taken through all your years? And especially before the flare now?
Btw, bodyfat is pro-inflammatory. The very process of losing weight is anti-inflammatory.
"Within the past months I been lacking sleep and very stressed."
That probably caused the flare, as you have guessed. Then that's your number one job. Reverse that, especially the lack of sleep. Since exercise is anti-stress, see what you can do without pain. It is wrong to be a Rocky or a "one more rep" type. Usually.
"stay away from sugary drinks"
I see nothing wrong with sugar, as long as it's not a cause of gaining weight. Or wreaking havoc with gut microbes. There's a huge amount of self-interested hype regarding nutrition. Youtubers and book authors always have to demonize something to get attention to be part of a fad. That's also true now in medicine. Trut nothing blindly.
"Can i have lupus with a negative Ana"
Yes, though rarely. You might be the rare one. Or not. The rheumy should order an ANA *panel* test. Now what if you have lupus that isn't lupus, but is. That's murky, as is most of immune dysfunction. It means that you shouldn't look at what typical lupus does to people and figure that's what will happen to you. AND AND AND! most lupus patients won't do what it takes to have a very anti-inflammatory life. They'll just say, "I take the pills".
"Until I started having this “flare” does that mean lupus has probably done a lot of damage since it went untreated for so long? "
My guess is no. For the present. You can ask the rheumy to test for organ damage. My guess is there won't be any.
"I rarely get sick or have the flu, I came in contact with the strep and never had any type of symptoms"
That's a *benefit* of a hyper immune system.
"had a basic allergy test"
I'd say that most allergists focus too much on the humdrum prick skin tests and miss the more intricate things. Like what you have.
I always try to avoid over use of medical jargon. But we can do these two:
erythema = redness
nodusum = bumps aka nodules
And guess what? The bumps form because of inflammation. That brings things full circle. :) When they did the biopsy, they found no cancer cells but they would have found lots of pro-inflammatory immune system cells like maybe neutrophils. That'd be in the pathology report from the biopsy. (You should keep copies of everything,)
I mention all this to take some of the mystery out of what is happening.
---------------
And one last thing for today: pred reduces inflammation because it suppresses the immune system. So too much pred can keep your immune system from fighting any active strep other infection. Pred is a double edged sword.
"A few months ago I was a healthy woman..."
Women are around 4 times more likely to have mystery immune conditions than men. It's not that unusual for healthy young women who are exercisers to develop mystery immune conditions. It can be very emotionally difficult to then adjust to being so restricted from your usual activities and lifestyle that you had before the illness. Having a thoughtful plan to improve your chances can alleviate that.
"now I’m finding it hard to do my daily activities because of my pains."
You have to pay close attention to whatever might "trigger" your immune system into over reaction. There is a whole big line of thought which says that bodywide inflammation can be very related to what happens in the gut, particularly to gut bacteria. Or maybe to pollens or humidity or certain foods or stress or whatever. You have to detect the clues.
Sleep is anti-inflammatory. Exercise makes muscle release anti-inflammatory biochemicals like IL-10. Maybe you can do an upper body workout with dumbbells. Doing the super-slow approach can work the muscles while minimizing stress on the joints.
Ginger and mint are some natural anti-inflammatories.
It also might go away in its own.
Not likely. But make sure sure sure that you follow the taper instructions to wean off it at the end.
And let me know if joint symptoms subside quickly. How many milligrams is it? 60mg?
"What type of diet should I focus on while on these meds?"
Low glycemic index foods. That will prevent harm from blood sugar going high because of pred.
https://glycemicindex.com/gi-search/
Look up everything you eat. It is often counter-intuitive, e.g raisins are high but prunes are not high. Whole wheat bread is not good, but stone ground bread is good.
I know that low GI works from experience in taking care of my father. It's not just some theory.
Avoid excess salt to keep blood pressure from rising.