I posted about experiencing intermittent burning joint pain and I appreciated hearing everyone's responses. There were a few people who said they also had this.
When I saw my hematologist (MPN specialist) a couple weeks ago, I told him about the burning joint pain. He wanted me to get it checked out because he thought it might be something unrelated to the ET or the HU, so I made an appointment with my GP. She ordered a bunch of blood tests to rule out various autoimmune diseases or viruses.
I got the blood tests and I'm awaiting my results. As far as I know, I haven't had any other symptoms that points to an autoimmune disease. Besides fatigue and regular (non-burning) joint pain, but I'm pretty sure that's all ET. So I don't think I'll test positive for anything.
But then again I also thought nothing was gonna pop up on the blood tests that diagnosed me with ET, so who knows? 😂
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brightlys
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You can see my post "Last Dose" to know why I have needed to learn about all this.
Even with all the tests it is possible to have all negative and still have an A-I. If your pain does not improve you might seek consult with a rheumatologist. You may benefit from a more holistic study, for example range of motion, various scans, strength. These are all things that can be part of an A-I exam. Often a neurologist gets involved too.
Thank you for the suggestions! I'm admittedly not very knowledgeable with autoimmune diseases. It's good to know that tests coming back negative may not rule things out.
I personally think it is a form of nerve pain and I told my doctor this. I had some small fiber neuropathy after a virus (suspected covid but I tested negative 2x so uncertain) two years ago, but it seemed like it resolved after a couple months and the neurologist did a bunch of tests but nothing came back abnormal except a slightly low vitamin that was corrected. When I had the SFN, it felt like electric shocks all through my body. Truly awful.
While this burning joint paint doesn't feel like electric shocks, there hasn't been any swelling or redness. So I think it's a type of nerve pain, but my doctor said nerve pain can be caused by autoimmune stuff so they're checking me more thoroughly than when I had the SFN.
And no, I'm not on that high of a HU dose anymore! I've been on 1000/mg a day since October and I'm no longer a walking zombie. 😂 I'd be surprised if the HU was the cause, given I wasn't having the pain when I was on the higher dose - though I understand side effects can happen at any time.
Neuro and Rheum are tightly connected and many treatments are the same. They also are black arts to a degree, things are way less quantified than MPNs.
If you do turn out to have risk for A-I you will want to take care if you consider IFN
On covid or other virus: A-Is can be triggered by various infections, and more rarely vaccines. I know about the 2nd one. It's possible your infection with something at that time was a trigger.
I just read the post you wrote on IFN and wow! I really appreciate that information. I had no idea.
The specialist I'm seeing doesn't feel I'm a good candidate for IFN due to my migraines (concerned IFN would exacerbate them), but he thinks I'd do great on Ruxolitinib. Unfortunately, my insurance won't cover Ruxolitinib and so the current plan to remain on low dose HU unless something changes.
That's interesting about viruses triggering autoimmune diseases. I had the ANA and CR protein test when the neurologist was ruling out causes for the SFN and it came back negative at the time, but I don't think he did any other tests. This time, my GP sent me to the lab with like 4 pages of tests before those two. It will be interesting what comes of up.
A-I markers like ANA etc, in presence of A-I condition, can change over time both up and down, it's part of the black art.
Be sure SS-a is in your test set. Mine changed drastically in weeks, but my case is not normal. I was neg for everything else as of last Apr.
Look fwd to know your results. I got 17 blood vials for one of the tests, but the guy said he's done up to 23, so I don't hold the record there.
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Strange you insurance would cover IFN off label but not Rux. Maybe they compared Pegasys which is cheaper than Bes or Rux. Rux will get a lot cheaper late 2028.
I will message my GP about getting SS-a tested. I went back after I read your message and looked over what got tested. SS-a wasn't part of the order. I appreciate you suggesting this!
Test results are trickling in my patient portal. So far my C Reactive Protein is high, but my Sed rate is normal. Thyroid is normal.
I'm still waiting on the results for rheumatoid factor, celiac disease, shingles/chickenpox, and HSV. I sent a message requesting the Sjörgens markers test.
C Reactive Protein is .82. Normal is considered under .50 at my lab. It also was in the normal range a year ago.
Not sure if that means anything or if it's related to ET inflammation.
high CRP points to general inflammation, which covers almost every bad thing that can happen including MPN complications. But it is often associated with A-I's specifically.
Since your CRP went from neg to pos knowing why is a worthy effort.
As you see in my list, it can be a long hunt for so many other possibilities.
Yes, I saw your list! I had no idea testing for A-I conditions were so complicated. I'm trying to do my own research so I understand more.
I have a follow up appointment with my GP on Friday and I think I will ask for a referral to a rheumatologist to explore more. It is interesting that my CRP was normal a year ago, because I definitely had ET then. It's doubled since then. Though I imagine inflammation can go up and down.
Hmmm. A possible connection between IFN and migraines is interesting news to me. I'm on Besremi for PV and perhaps the only positive change (aside from amazing and fast reduction in platelets and HCT!!!) is an almost complete reduction in my visual migraines. So I'd given Besremi credit for that. I did have one scary darkening of vision, of very brief duration, in the last few months, but the oncologist thought that it was a (new to me) version of migraine. I wish I understood how one tells such things from ischemic issues.
Are you trying any supplements for joint health, by the way? Or is the pain beyond that reach?
Interesting on the darkening vision. In my early Bes weeks I had the opposite for a couple days, room lights seemed sunlight bright, this went away. I also had a permanent (so far) improvement in vision (the eye chart test).
So I get ET-induced migraines (ocular and regular). They happen once my platelets go over the 900-1000 mark. The concern with the IFN is that because it has a possible side effects of headaches that it may not relieve the head pain. Right now, the HU is keeping my platelets in the 600 range, so I have zero headaches or migraines.
It is definatley worth checking out the possibility of an autoimmune issue. You will need to rule it out. It is important to note that joint pain and peripheral neuropathy are both potential HU adverse effects. These adverse effects can take tento develop and are dose dependant. That is not to say that the HU is the cause, just that it is possible. It is also possible that your symptoms are unrelated
Thank you, Hunter! I did ask the MPN specialist I saw, but before we jump to the HU, he wanted me to get checked out. Especially since the pain is so specific. It's been happening only in joints and it's always on both sides (so both wrists hurt at the same time, both ankles hurt at the same time, etc).
That said, if none of the tests show anything, I will circle back with hematology about the HU.
What your describing here with joints effected on both sides but no swelling sounds like arthritis poss zero neg RA. Hopefully they've done bloods for rheumatoid factor,ESR and CRP.Seems like they are doing a sensible approach of testing before deciding it's ET related.
All of those things are getting tested! And yes, I think the presentation is why the doctors want to rule out possible autoimmune disease. I'm hopefully going to have my results next week.
Morning! I am new on the channel and only recently (sept 23) diagnosed. Started with Hydrea 1500 mg daily - now on 1000mg daily (ex Mon & Fri = 500mg). Also suffering joint pain since starting on Hydrea. Even after decreasing the intake I still have the problem. Hein
And good to know! My hemotologist (MPN specialist) doesn't suspect the HU because the burning joint pain didn't happen when my dose was higher. But I'll definitely ask about the HU if everything comes back normal.
Is joint pain the only side effect you've dealt with? Have you discussed other treatments with your doctors?
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