Question: could this sx be related to RA or Lyme?

[NancyB]

About a week ago I had an area on my front lower leg, over the tibia, that became painful to the touch, red and swollen. No signs of a bite or any irritation of the skin. It became more swollen by Friday and I saw the NP at my PCP office. I was thinking blood clot or cellulitis, but she said it was not in the area for a deep vein thrombosis and said to watch it and apply ice and I made a follow-up on Tuesday a.m.

On Saturday, it became very painful at times–a dull pain and it swelled more despite icing it every few hours. I planned to go to an ER or urgent care Sunday morning, but then the pain was much less. I went back to the doc on Tuesday and it was better, but still more redness and swelling than when she originally saw me.

She ordered bloodwork, including a D-dimer which had been elevated several weeks ago and I brought up my concern as to whether this could be related to bone cancer, with my history of breast cancer lurking in the back of my mind. So, she ordered an xray.

The lab said they would have the results to them no later than Friday, so I will call in the a.m. Meanwhile, it is subsiding and I’m wondering if this could be some non-joint related inflammation from RA or Lyme? Has anyone heard of or had symptoms like this? Or perhaps it was cellulitis, but with all the abx I’m on it was kept at bay….hmmmm. This is the first time in quite a few years that I’ve had a ‘scare’ like this…not fun!

[Maz]

@NancyB wrote:

The lab said they would have the results to them no later than Friday, so I will call in the a.m. Meanwhile, it is subsiding and I’m wondering if this could be some non-joint related inflammation from RA or Lyme? Has anyone heard of or had symptoms like this? Or perhaps it was cellulitis, but with all the abx I’m on it was kept at bay….hmmmm. This is the first time in quite a few years that I’ve had a ‘scare’ like this…not fun!

Hi Nancy,

So sorry to hear you’re facing this worry and have had this pain, too. As just a fellow patient insight, I don’t recall reading anything remotely similar occurring in RA patients as a result of their RA. Joint pain and swelling and sometimes organ involvement, but not anything to do with swelling of skin on the shins, unless it’s some type of skin or a deeper tissue infection that has occurred as a result of immune-suppressive drugs.

As for whether it may be Lyme-related, anything is possible with Lyme, because it is so immune-suppressive, in and of itself, that it can trigger or mimic anything under the sun….hence, why it’s been dubbed “the second great imitator” (the first being syphilis). ACA or acrodermatis chronica atrophicans is one dermatological manifestation of Lyme that is not thought to exist here in the US, but there have been patients passing through here who clearly had ACA. Here is a pic of ACA affecting the shin on dermis.net:

http://www.dermis.net/dermisroot/en/35130/image.htm

Here is a past discussion thread on ACA:

viewtopic.php?f=1&t=4829&hilit=ryan+pics

Maybe the only way to know what this is would be to get a skin biopsy of the inflamed area to check for infection and pathology. There can sometimes be overlaps in rheumatic disease that don’t always present themselves at the outset but evolve over time. Some strange shin rashes and pain can also occur with thyroid disease (i.e pretibial myxedma). Have you had a thyroid work-up recently?

Do think you’re very wise to rule out anything more serious right at the outset, Nancy, but also to further pursue answers when your worst concerns are ruled out and this may take a bit of detective work on your part. Please let us know what you figure out and will keep you in my thoughts till then.

[NancyB]

Maz,
first of all…the good news!..that the xray was normal! That’s such a relief and now I can focus on all my other health issues and getting better.

You are a wealth of information and I find the ACA info very interesting. We still don’t know exactly what caused this condition and, by the way, it is resolving with only a slight redness and some residual lump where the swelling was. I went online and found that there are quite a few articles about ACA, but I didn’t see much about the exact progression and, of course, it’s not been reported much in the U.S. But, that doesn’t mean that ACA or some similar cutaneous manifestations don’t happen here as well.

The link to the thread at RBF was interesting…but for some reason there were comments about photos being posted and I didn’t see those or how to access them. Some of the other photos on the derm site looked similar, although mine was mostly red, not really with the blue aspect that is described. Also, I didn’t read much about there being a particular type of pain that was associated with it. I think what alarmed me the most was the intense, dull pain that I had.

I saw one article that seemed to imply that the ACA might occur at the site of the original EM rash. The funny thing is that in my foggy memory of when I was probably infected originally with Lyme in my twenties, the rash that I remember was in this same area of my leg. Not sure if that’s accurate….but intriguing at least.

thanks again…

[Maz]

@NancyB wrote:

I saw one article that seemed to imply that the ACA might occur at the site of the original EM rash. The funny thing is that in my foggy memory of when I was probably infected originally with Lyme in my twenties, the rash that I remember was in this same area of my leg. Not sure if that’s accurate….but intriguing at least.

Wow, Nancy, very intriguing connection to have made, to say the least! 😉

I recall the pics that Ryan’s Dad posted of his son’s ankle area to look pretty similar to one posted on the same thread, higher up in the thread. The pics may have got lost during the transition to our new software or they were just removed to protect their son’s privacy. You could try PMing him to ask if he would kindly send those pics to you privately for comparison, but haven’t heard from these parents in a while now, so not sure if their young man is doing better or if they decided to take a different course with treatment. Lovely folks, though, so am sure they’d respond, if they get the PM.

As I recall, there can be some variations in presentation with ACA. If you click on the following link, you’ll find some info on Dr. J’s website (LLMD in Wash DC) with some hand/foot pics of ACA that look slightly different from classical presentations:

http://jemsekspecialty.com/lyme_detail.php?sid=8

Presentation may also vary with strain variations…e.g. differences in Euro strains to strains found elsewhere in the world. The weird thing about ACA is that it can sometimes look like and be misdiagnosed as morphea.

Do hope you can figure this out, but very happy to hear it’s improving and you’ve ruled out your worst fear. Whew! Was the doc able to do a biopsy to check for pathogens, like staph?

[NancyB]

Thanks and I’ll check out those links, Maz. I didn’t even realize that Dr. J had a website with info.

No, they didn’t do a biopsy and it is resolving at this point–but, if it occurs again I would like to know more about what is going on. I’ll be seeing my LLMD next week in NY and will discuss it.

[Maz]

@NancyB wrote:

Thanks and I’ll check out those links, Maz. I didn’t even realize that Dr. J had a website with info.

No, they didn’t do a biopsy and it is resolving at this point–but, if it occurs again I would like to know more about what is going on. I’ll be seeing my LLMD next week in NY and will discuss it.

Nancy, really glad you’re able to see your LLMD next week. If you haven’t already thought to do so, it might help to take a digital pic of two of the shin swelling/redness to show the doc when there in case it has resolved completely by then. Sometimes these things pop up repeatedly, so it might help him discern if any further treatment action may be needed at this stage. I always take pics of any weird rashes I get….even rashes that are clearly die-off reactions and late stage bulls-eyes, just so the doc can remain abreast of what is going on that may help in figuring out a way forward with treatment plan. Pics can speak volumes and just a good way to document it in case it happens again, too.

Let us know what you discover next week. 😉

[NancyB]

Maz,
of course! I should have photographed that leg while it was happening (I’m always giving out that advice to people with rashes)…but alas, I didn’t! Not even with my new digital camera…

I will talk to Dr. H about it and maybe he’ll have an idea. We’re leaving in the morning to fly up to NY. Meanwhile, I just got a call from Dr. H’s office with concern about an elevated D-Dimer from last week. I think I will post about it in a separate thread, because I’m confused and not sure if I should be worried!

Nancy

[NancyB]

(I decided to continue with this thread after realizing that it might be too confusing otherwise.)

I just got a call from my LLMD’s office after they were sent the results of my recent labs by my local PCP. However, I had not even been contacted by my local doc about the results! Dr. H’s office wanted to be sure that they were following up locally.

On 8/11 my D-dimer was elevated to 2.19 (normal is less than .5). My PCP examined me and I had no symptoms of blood clots. No swelling or pain in the extremities, no shortness of breath (other than a positional kind that I’ve always had when Babesiosis is active). So, they decided that it was elevated due to inflammation. This was just after the RA diagnosis and I was in a lot of pain.

They did a repeat test last week, after the pain and swelling in my lower leg, which was determined clinically to NOT be a DVT. Now, the D-dimer has gone up to 4.7. We leave for our trip to see my LLMD first thing in the a.m.

I’m wondering if it is typical to have these lab results with RA? I’m actually feeling much less inflamed now than I did in August. Should I be worrying about blood clots or something else? I just emailed my local doc to see if I need to be concerned. I hope I’ll hear something soon, but I’m just wondering if anyone has had similar experiences.

Thanks!

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