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Prednisone and Ct scan ?
Hello I have a question in regards to chest x ray and Ct scan of chest? I been on and off from prednisone 20mg to 5 mg due to a condition called erythema nodosm. And can’t seem to find cause of it, I am now seeing a hematologist to figure out if this can be lymphoma or leukemia. Back in November and December of 2022 I came back normal for chest x ray and Ct scan. My question is I was on prednisone for both these tests, and I’m finding out now that prednisone can drastically reduce the size of enlarged lymph nodes. I am soo concerned about this. Is this true ? If so, how long should I stop the prednisone for in order to repeat the tests and have a accurate result.
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COMMUNITY LEADER
1 Comments
Hello Ken thank you so much for your feedback, I will have my follow up on May 16 and will definately mention the ultrasound. I got tested for cancer and leukemia on my labs. Everything was normal except for hematocrit and findings of atypical B cell findings, I haven’t had a follow up with my hematologist but was able to access these results through my laboratory. This is what it states
“Although the population expresses CD5 and CD23, further characterization (and therefore, confirmation of a B-cell chronic lymphocytic leukemia/small lymphocytic lymphoma--B-CLL/ SLL--immunophenotype) is not possible. Relatively low levels of monoclonal B-cells immunophenotypically compatible with B-CLL/SLL have been described without clinical progression or overt evidence of a lymphoproliferative disorder.”
“Abnormal B-cells: 0.2%
Date Issued: 05/03/2023 2333 ET
Scatter properties compatible with small to intermediate cell size, cells characterized as: CD45+, CD5+, CD10-, CD19+, CD20+, CD22+, CD23+/-, sIg lambda+; the minute size of the specimen precludes further characterization”
What does this mean ? Everything else came back normal, for several cancer antigens I came back normal. I know I shouldn’t be looking at my results or trying to figure them out before having my follow up but, Ken I couldn’t wait :(
“Although the population expresses CD5 and CD23, further characterization (and therefore, confirmation of a B-cell chronic lymphocytic leukemia/small lymphocytic lymphoma--B-CLL/ SLL--immunophenotype) is not possible. Relatively low levels of monoclonal B-cells immunophenotypically compatible with B-CLL/SLL have been described without clinical progression or overt evidence of a lymphoproliferative disorder.”
“Abnormal B-cells: 0.2%
Date Issued: 05/03/2023 2333 ET
Scatter properties compatible with small to intermediate cell size, cells characterized as: CD45+, CD5+, CD10-, CD19+, CD20+, CD22+, CD23+/-, sIg lambda+; the minute size of the specimen precludes further characterization”
What does this mean ? Everything else came back normal, for several cancer antigens I came back normal. I know I shouldn’t be looking at my results or trying to figure them out before having my follow up but, Ken I couldn’t wait :(
COMMUNITY LEADER
Thanks for updating, SG. I'm happy for you and I hope you are entering a period where you get more and more good news. You deserve a break :)
COMMUNITY LEADER
"hematologist"
I would say to that hema, "why were silicone breast implants declared to be completely safe, but now everyone knows they aren't for **some** people with overactive immune systems?"
"aesthetician"
She's talking about local inflammation, I am talking about systemwide inflammation. Besides, the fillers being gone now coincides with all your systemwide symptoms getting better these days. See the connection?
"atypical B cells"
Tell all docs every time that you were diagnosed long ago with lupus, and recently with the immune mystery of erythema nodosum. If they don't see the connection with atypical B cells, then they are just plodding along and not using any thinking ability.
"I been feeling so well."
That's great news, SG. I'm happy to hear that. :) Now your goal is to avoid stirring up inflammation again and you will be back to deadliftng again and feeling like a champ.
Regardless, you wil always have an unusual immune system - and so then the more you go looking for irregularities in tests, the more you will find them.
If the hema finds an increased number of atypical B cells at the next test, then he will keep monitoring you and you will get scared over and over again. Maybe for years to come. What he should say to you is, "there's no reason to think you have cancer, but we'll monitor you just as an overabundance of caution." But I don't think you will have an increased number of atypical B cells, because your symptoms are much better.
SG, I know you can't stop worrying, but I think our goal here is to get you to realize that the worry is not much justified. You can still keep worrying, but realize that the worrying is not called for. Imagine that you are afraid of spoons. You could tell yourself, "it's silly to be terrified of spoons, and I can't stop - but I know it's silly". [I just saw a funny video of a dog being terrified of a spoon :) ]
Let me know what happens next, which will most likely be the ultrasound report saying that the nodes look "reactive" which means not-cancer. You can even ask the ultrasound tech when they are doing the scan, "Does it look normal and reactive?" Most won't tell you these days, but maybe that one will and so you won't have to wait for the written report.
I'll always reply to you, I promise.
I would say to that hema, "why were silicone breast implants declared to be completely safe, but now everyone knows they aren't for **some** people with overactive immune systems?"
"aesthetician"
She's talking about local inflammation, I am talking about systemwide inflammation. Besides, the fillers being gone now coincides with all your systemwide symptoms getting better these days. See the connection?
"atypical B cells"
Tell all docs every time that you were diagnosed long ago with lupus, and recently with the immune mystery of erythema nodosum. If they don't see the connection with atypical B cells, then they are just plodding along and not using any thinking ability.
"I been feeling so well."
That's great news, SG. I'm happy to hear that. :) Now your goal is to avoid stirring up inflammation again and you will be back to deadliftng again and feeling like a champ.
Regardless, you wil always have an unusual immune system - and so then the more you go looking for irregularities in tests, the more you will find them.
If the hema finds an increased number of atypical B cells at the next test, then he will keep monitoring you and you will get scared over and over again. Maybe for years to come. What he should say to you is, "there's no reason to think you have cancer, but we'll monitor you just as an overabundance of caution." But I don't think you will have an increased number of atypical B cells, because your symptoms are much better.
SG, I know you can't stop worrying, but I think our goal here is to get you to realize that the worry is not much justified. You can still keep worrying, but realize that the worrying is not called for. Imagine that you are afraid of spoons. You could tell yourself, "it's silly to be terrified of spoons, and I can't stop - but I know it's silly". [I just saw a funny video of a dog being terrified of a spoon :) ]
Let me know what happens next, which will most likely be the ultrasound report saying that the nodes look "reactive" which means not-cancer. You can even ask the ultrasound tech when they are doing the scan, "Does it look normal and reactive?" Most won't tell you these days, but maybe that one will and so you won't have to wait for the written report.
I'll always reply to you, I promise.
1 Comments
Hey Ken, just wanted to let you know that you were right, the hematologist/oncologist, told me there’s no reason to believe this is cancer. Thank you for guiding me ken, it hasn’t been easy, I now know that I’m one step closer to figuring out what’s really triggering this erythema nodosum, and can’t wait to put it in remission or heal it completely.
Thank you Ken, sending you blessing :)
Thank you Ken, sending you blessing :)
COMMUNITY LEADER
It seems the hema actually did a needle biopsy of an underarm node? Well, that's a rare doc then. Did you have to do a lot of persuading?
I would say that if the hema did a needle biopsy of an underarm node, then they would not be likely to now also order an ultrasound of the same underarm nodes. There seems no point to that. However, a much better request to that doc would be to say, "Doc, can you test me for systemic inflammation blood *markers* that are more advanced tests than the usual ones?" For example, IL-6 and TNF and Interferon. (I think you've already had the ordinary ones: CRP and ESR.)
3 of them:
IL-6
TNF
Interferon
If there's time, I would also ask the hema if they think the fillers could have stirred up your immune system in general. Just to get another opinion on that particular point.
I would say that if the hema did a needle biopsy of an underarm node, then they would not be likely to now also order an ultrasound of the same underarm nodes. There seems no point to that. However, a much better request to that doc would be to say, "Doc, can you test me for systemic inflammation blood *markers* that are more advanced tests than the usual ones?" For example, IL-6 and TNF and Interferon. (I think you've already had the ordinary ones: CRP and ESR.)
3 of them:
IL-6
TNF
Interferon
If there's time, I would also ask the hema if they think the fillers could have stirred up your immune system in general. Just to get another opinion on that particular point.
COMMUNITY LEADER
Well, SG, this is good news for you. I've been saying all along that you have an unusual & overactive immune system, but that you don't have any cancer of your immune cells.
These latest tests say that you have unusual immune system cells ("atypical B-cells"), but the advanced tests point to saying that your immune cells are not cancer.
=================================
Here are some details:
Your B-cells have CD5 and CD23. That can be caused by several different conditions, including an unusual immune system. But the two immune cell cancers called CLL and SLL also have CD5 and CD23, therefore they had to look further to rule out CLL and SLL. They discovered you do not have anything else pointing to CLL or SLL.
Let's think about CD5. That can be present sometimes with lupus, or also be present with something similar to lupus. So that fits you. You have something like lupus, even if technically you don't exactly have lupus.
Let's think about CD23. That can be present in allergy - such as in your possible reaction to the fillers. So that fits you, too; without it being cancer.
The hema will take the results of these tests, along with your long history of immune system conditions, and tell you that there is no reason to think that you have cancer. There is also every reason to think that all your symptoms, including the slightly enlarged nodes, are from your immune system. Not from cancer.
So hopefully you can be less tense as your May 16 appointment approaches :)
These latest tests say that you have unusual immune system cells ("atypical B-cells"), but the advanced tests point to saying that your immune cells are not cancer.
=================================
Here are some details:
Your B-cells have CD5 and CD23. That can be caused by several different conditions, including an unusual immune system. But the two immune cell cancers called CLL and SLL also have CD5 and CD23, therefore they had to look further to rule out CLL and SLL. They discovered you do not have anything else pointing to CLL or SLL.
Let's think about CD5. That can be present sometimes with lupus, or also be present with something similar to lupus. So that fits you. You have something like lupus, even if technically you don't exactly have lupus.
Let's think about CD23. That can be present in allergy - such as in your possible reaction to the fillers. So that fits you, too; without it being cancer.
The hema will take the results of these tests, along with your long history of immune system conditions, and tell you that there is no reason to think that you have cancer. There is also every reason to think that all your symptoms, including the slightly enlarged nodes, are from your immune system. Not from cancer.
So hopefully you can be less tense as your May 16 appointment approaches :)
1 Comments
Hi Ken I just came out from seeing my hematologist. Thank you for helping me understand all this. I asked him about my fillers and he didn’t seem concerned or a reason to look into. I did mention to him that about a week and a half I seen my aesthetician, she examined me and said that she didn’t feel any inflammation, nodules, or lumps. She stated she would know if I was having an immune response to them, and that my filler was pretty much already gone. The reason I went to see her was due to me having pain, but the pain is odd. It sometimes stays on one side or the other. She told me something very interesting, she asked me if I have had any tooth fillings in the past years, and told me to probably get them checked out since I been having so many issues with my mouth. I’ll let muy rheumy know about my fillers when I go see her though and see what she thinks. The hematologist did a breast exam on me and also checked my underarms. He said he didn’t feel anything abnormal but will have me do a ultrasound. He did seem more concerned about my “atypical B cells” and that scares me ken. He wants to repeat my labs in a couple of weeks. I’m still off of prednisone and I been feeling so well. I even started running, and my EN nodules have decreased. What if my 0.2 atypical B cells increase, what then? What would he need to do next?
COMMUNITY LEADER
"Also can this have caused my erythema nodosm?"
Yes, it could have triggered the EN. I think that is likely. You had your early life episode of something like lupus, which was dormant for years. Then something stirred it up.
Yes, it could have triggered the EN. I think that is likely. You had your early life episode of something like lupus, which was dormant for years. Then something stirred it up.
COMMUNITY LEADER
"I did have a cyst on my left breast about 3 years ago, and it went away on its own confirmed with ultrasound. Since then my left breast has never been the same."
If you ever get a suspicious bump there in the coming years, your first thought should be, "there goes my inflammation again". But then you should get it checked out anyway.
If you ever get a suspicious bump there in the coming years, your first thought should be, "there goes my inflammation again". But then you should get it checked out anyway.
1 Comments
Should I have my hematologist biopsy one of the lymph nodes? Can this be a sign of lymphoma, I still havent got my lab results and am having so much anxiety. What other tests should I ask for Ken? Since many of the lymph nodes are enlarged does that mean that what ever this is, it’s spread?
COMMUNITY LEADER
"I have completely forgot to tell my providers about my jaw fillers and chin filler."
That's not your responsibility to do, but still it is to your advantage to remind docs of anything that is relevant.
"Is it still possible for me to have inflammation from the filler even if it’s been almost a year."
Yes. Maybe it took a while to start dissolving and that's why the effects weren't until November. Maybe.
You probably have the hyaluronic type, not the calcium type which is harder.
"Should I have it dissolved ?"
As I'd said, that might be dangerous. But I don't know for sure.
"Should I be concerned about the adenopathy in my underarms."
You should see it as just one more example of how you get inflammation more than the average person.
That's not your responsibility to do, but still it is to your advantage to remind docs of anything that is relevant.
"Is it still possible for me to have inflammation from the filler even if it’s been almost a year."
Yes. Maybe it took a while to start dissolving and that's why the effects weren't until November. Maybe.
You probably have the hyaluronic type, not the calcium type which is harder.
"Should I have it dissolved ?"
As I'd said, that might be dangerous. But I don't know for sure.
"Should I be concerned about the adenopathy in my underarms."
You should see it as just one more example of how you get inflammation more than the average person.
Thank you so much for your response ken, I have completely forgot to tell my providers about my jaw fillers and chin filler. I got them done around may of last year and was told they dissolve on their own within 6 months. I never had any side affects. I started having left jaw pain jst recently around November and it went away with the prednisone and now came back. Is it still possible for me to have inflammation from the filler even if it’s been almost a year. If the ct showed fat stranding is it related to my jaw filler. Should I have it dissolved ?
And in regards to my breasts, I have not had any type of work there, nothing done at all. Should I be concerned about the adenopathy in my underarms. I did have a cyst on my left breast about 3 years ago, and it went away on its own confirmed with ultrasound. Since then my left breast has never been the same.
And in regards to my breasts, I have not had any type of work there, nothing done at all. Should I be concerned about the adenopathy in my underarms. I did have a cyst on my left breast about 3 years ago, and it went away on its own confirmed with ultrasound. Since then my left breast has never been the same.
2 Comments
Actually I’m looking through my pictures and it was around early July when I got my jawline fillers and chin fillers. i didn’t have no sort of reaction when placed, but around September I did have a lump under on left side floor of mouth, and now I got that same lump and other growths under, im seeing an ENT for this. Could fillers still affect me months after, does this sounds related? Should I get it dissolved ?
Also can this have caused my erythema nodosm? I still have 2 nodules but my bones don’t hurt, n slowly their going down on their own. What do you think Ken?
COMMUNITY LEADER
The radiologist should have been notified in advance of your "clinical history" of having fillers. Then they could have better interpreted what the CT image was showing.
1 Comments
...and any rheumy should be told that overtly, too.
COMMUNITY LEADER
I don't know if a CT can confuse fillers with inflammation or skin thickening. I'd **guess** it's possible either way: there is actual inflammation or there isn't. Submental = in the centerline under the chin.
But with your hyperactive immune system, it's certainly possible that you get reactive inflammation to the fillers while the average person would not.
There are many women getting their silicone breast implants removed these days and then their overall health improves significantly. For years women were told that the silicone would not cause a reaction, but in reality for some women it did cause a reaction.
If you also have breast implants that could explain why your underarm (axillary) nodes are slightly enlarged.
As for the slight fat accumulation, I think you'd said that the pred was causing your face to get a little rounded.
If stopping the pred did not result in the erythema nodosum did not flare up then congratulations. You took the chance and surprisingly it paid off. Maybe the vicious cycle of self sustaining inflammation is broken and you can stay off the pred now.
Important: You'd now have to carefully think back about the timing of any fillers and implants, and whether that was before your current immune system problems began. That could explain a lot.
If your fillers are the hyaluronic type, they might be able to be dissolved.
Were you once talking about a reaction to silver earrings?
But with your hyperactive immune system, it's certainly possible that you get reactive inflammation to the fillers while the average person would not.
There are many women getting their silicone breast implants removed these days and then their overall health improves significantly. For years women were told that the silicone would not cause a reaction, but in reality for some women it did cause a reaction.
If you also have breast implants that could explain why your underarm (axillary) nodes are slightly enlarged.
As for the slight fat accumulation, I think you'd said that the pred was causing your face to get a little rounded.
If stopping the pred did not result in the erythema nodosum did not flare up then congratulations. You took the chance and surprisingly it paid off. Maybe the vicious cycle of self sustaining inflammation is broken and you can stay off the pred now.
Important: You'd now have to carefully think back about the timing of any fillers and implants, and whether that was before your current immune system problems began. That could explain a lot.
If your fillers are the hyaluronic type, they might be able to be dissolved.
Were you once talking about a reaction to silver earrings?
1 Comments
...or maybe dissolving the filler would just spread the material and make things far worse.
Hey Ken I was able to get my results for the CT and I don’t understand my results can you please help me understand them. I stopped taking prednisone for 7 days, and the first day was tough but it seems that my body is doing well now, which I’m surprised. I was able to have the CT scan of neck, pelvis,and abdomen. These are the findings
“There is a thickening of the skin in the axillary regions bilaterally. There is subcutaneous fat stranding in the region of the left axilla with shotty adenopathy bilaterally in the axillary regions. None of the lymph nodes are significant by size criteria”
This is the Ct of neck finding
“There are mild inflammatory changes noted in the submental region with mild thickening of the overlying skin. ”
I wnna add that I have jaw fillers and chin fillers done about 1 year ago, idk if this might be the thickening of it.
“Mild subcutaneous fat stranding in the submental region may be consistent with underlying cellulitis. There is no evidence of abscess or significant adenopathy. Please correlate clinically.”
“There is a thickening of the skin in the axillary regions bilaterally. There is subcutaneous fat stranding in the region of the left axilla with shotty adenopathy bilaterally in the axillary regions. None of the lymph nodes are significant by size criteria”
This is the Ct of neck finding
“There are mild inflammatory changes noted in the submental region with mild thickening of the overlying skin. ”
I wnna add that I have jaw fillers and chin fillers done about 1 year ago, idk if this might be the thickening of it.
“Mild subcutaneous fat stranding in the submental region may be consistent with underlying cellulitis. There is no evidence of abscess or significant adenopathy. Please correlate clinically.”
COMMUNITY LEADER
Hi, SG. Prednisone cannot **drastically** reduce the size of cancerous lymph nodes.
But prednisone can much more reduce the size of benign, inflamed, not-cancer lymph nodes.
Here's the problem with stopping pred. You are prone to severe pred withdrawal symptoms. Your erythema nodosum is also persistent. Since the chances of you having cancer are very very small, it would be unwise to stop the pred. You should never never stop it yourself.
Instead of stopping pred, ask the hema if you can instead have a new type of "hi-res CT". With contrast for sure.
Or you could ask for a PET scan, which would make any suspicious nodes "light up" on the scan.
Overall, having another scan is more like a fishing expedition. I would not expect it to find anything like cancer.
========================
However, if you really insist on stopping the pred, here's my guess:
You should ask for a longer than usual taper. Tell the hema about your previous bad experience with "pred withdrawal". You are proven to be a special case, make sure the hema knows that.
So, remember when you stopped the pred and your EN symptoms returned very quickly? Now if a benign not-cancer node was enlarged, and that node got reduced in size by the pred, then it would likely return very quickly to its enlarged size. You have a proven history of inflammation returning very quickly after pred is stopped.
====================
And I'll say again there is not much reason at all to make me think you have any cancer.
A hema is not familiar with inflammatory immune system conditions such as you have. A hema knows cancer so that's what a hema will test for. The fact that a hema will test for cancer doesn't mean that you likely have cancer.
But prednisone can much more reduce the size of benign, inflamed, not-cancer lymph nodes.
Here's the problem with stopping pred. You are prone to severe pred withdrawal symptoms. Your erythema nodosum is also persistent. Since the chances of you having cancer are very very small, it would be unwise to stop the pred. You should never never stop it yourself.
Instead of stopping pred, ask the hema if you can instead have a new type of "hi-res CT". With contrast for sure.
Or you could ask for a PET scan, which would make any suspicious nodes "light up" on the scan.
Overall, having another scan is more like a fishing expedition. I would not expect it to find anything like cancer.
========================
However, if you really insist on stopping the pred, here's my guess:
You should ask for a longer than usual taper. Tell the hema about your previous bad experience with "pred withdrawal". You are proven to be a special case, make sure the hema knows that.
So, remember when you stopped the pred and your EN symptoms returned very quickly? Now if a benign not-cancer node was enlarged, and that node got reduced in size by the pred, then it would likely return very quickly to its enlarged size. You have a proven history of inflammation returning very quickly after pred is stopped.
====================
And I'll say again there is not much reason at all to make me think you have any cancer.
A hema is not familiar with inflammatory immune system conditions such as you have. A hema knows cancer so that's what a hema will test for. The fact that a hema will test for cancer doesn't mean that you likely have cancer.
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No. No doc would do it anyway, there is no justification.
"Can this be a sign of lymphoma"
No. Lymphoma wouldn't appear on both sides at the same time like that. Also those "shotty" nodes don't appear to be cancer.
"I still havent got my lab results"
What labs?
"and am having so much anxiety. What other tests should I ask for Ken?"
You can ask for ultrasound, to confirm that the nodes are "reactive" and not-cancer. But I'd be surprised if any doc went along with a ordering an ultrasound, because it isn't justified.
"Since many of the lymph nodes are enlarged does that mean that what ever this is, it’s spread?"
Nope, the word "spread" does not apply. Maybe it's from shaving or antiperspirant.