Is Sore Throat and Back pain related to ET?

[Label]

Hi everyone, I was diagnosed with ET, Calr mutation last year. I have been having sore throat and back pain since last year that keeps coming back. But the back pain is not as often as the sore throat. Checked it’s not Covid-19. My Gp seems to think that it could be related to ET. Just wondering if anyone is having the same. Thanks

[hunter5582]

MPNs are at the core inflammatory disorders. The deregulation of the JAK-STAT pathway does more than make our bodies make too many blood cells. We also overproduce inflammatory cytokines, which can cause a host of secondary symptoms.

I have JAK2+ PV. I do experience widespread joint pain, including back pain. I also have osteoarthritis and spinal deterioration. The systemic inflammation certainly makes these issues worse.

One of our friends with ET here on the forum has a related Eosinophilic esophagitis. This is rather rare, but it can cooccur with the ET.

You did not mention whether you are seeing a MPN Specialist. Managing ET is well beyond the scope of a GP. most hematologists do not have the KSAs to provide optimal care. That is why it is so important to have a MPN Specialist involved in your care. Just in case you have not seen this, here is a list.

mpnforum.com/list-hem./

All the best.

[Label in reply to hunter5582]

Hi Hunter, thanks for your reply. Sorry I forgot to mention that I am seeing a MPN Specialist in Cork Ireland but due to Covid my appointment is not as frequent as possible. I thought to ask my MPN specialist after my Gp said that my sore throat could be related but my last appointment got cancelled. I’m waiting for my next appointment which will be end of January. Thanks

[Foodies in reply to Label]

Hi, I find that really interesting as I am also CalR+ and have experienced severe back pain for some time. Have had the MRI etc, yes do have early osteoporosis and degeneration of the spine. I have recently taken up Reformer Pilates with a physio group and find it helps with the back. I also get a sore throat occasionally and it is not COVID. I also attend a haematologist in Cork and she sees me regularly every 3 months. On last visit was prescribed Allopurinol for bone pain. It’s helping but not sure that I will continue to tolerate the side effects. Hope you get some answers.

[Label in reply to Foodies]

Hi, Thanks so much. Sorry to hear you’ve got Osteoporosis and degeneration of the spine. I’ll definitely try Pilates and Physio group. It’s possible that sore throat and back pain comes with Calr. Thanks again

[Peachjoy in reply to hunter5582]

Hi Hunter.Re the list of MPN specialists, I’ve been told that Dr Cervantes in Barcelona has retired.

Best wishes and happy new year,

Peachjoy

[CalL1981]

I also have ET and constantly have a sore throat. I think I always have some sort of infection.

[Label in reply to CalL1981]

Thanks. Makes me realise that it could be part of ET

[Yakety_Yak]

Hi I also have ET, jak2+ one. I have also been having very sore throat for few months and lower back pain all the time. Sore throat also not covid. I get ulcers on my tongue and occasionally very dry tongue that keeps recurring over the years. I was assuming dry tongue might be from anemia, and assuming the new lower back pain and sore throat might be from the hydroxy and worried it's my kidneys or infection. I was going to ask the haematologist at next appointment in about a week. Haven't had an appointment in like 3 months so will be lots of questions. I just hope this time I'll have my assigned haematologist that I've only seen once and spoken to once since diagnosis 7 months ago. Interesting to hear my assumptions might be wrong and could be linked to the ET. Thanx Hunter for informing with something new again....you're very switched on 🙂 I still haven't looked into a MPN specialist as you last advised but I remembered once you've mentioned it here again so will do.

[Innessant]

The sore throat (on swallowing?) may be related to acid reflux.Worth eliminating this if not.

[Label in reply to Innessant]

That’s a good point. What do I need to do to find out if it is or not? Thanks

[Innessant in reply to Label]

I would discuss it with the other people evaluating your condition.It is unlikely but I was worried until I found this simple problem.Inspected throat only...

[AnBee]

I was on (and off) Hydroxyurea for 20 yrs before diagnosis of post et MF. Calr type 2 and TET 2. My throat was so sore all the way down into my upper lungs at the end I thought it was a severe form of inflammation and dryness from the illness When I finally saw a knowledgeable MPN specialist and transferred to Pegasys the sore throat etc completely disappeared. The MPN team acknowledged it was a known side effect of Hydroxyurea. I think we have to tease out side effects of drugs to the actual side effect of the illness. Because many of us need to be on long term chemical drugs we can develop sensitivities at any time to them I am the best I have been in years now with no real side effects except around for a few days after every 3 weekly injection from the chemical itself.

[Label in reply to AnBee]

I’ll definitely ask my haematologist on my next appointment if it’s side effects of the drugs I’m taking or side effects of ET. And I’m happy to hear you at your best in the last number of years. Thanks so much.

[EPguy]

I'm ET/PV Jak2, ~500 Hu per day. I have sore throat ~ half the time. The post here from AnBee inspired a look at this:

mayoclinic.org/drugs-supple...

<<Common Side Effects ... sore throat...>> Like many I've looked at the side effects list, but never paid attention to that one. Feels like light cold symptoms, these days that is an issue.

I get it near and between the tonsil area. Easily irritated by certain foods.

I'm an INF fan and AnBee is more inspiration to find out if it works for me.

[Label in reply to EPguy]

Yeah I looked it up too and saw sore throat is one of the side effects. Thanks so much