Bone pain and chills

[Cja1956]

Hello, all. I’m post Et Mf for the last 3 years. I was taking Fedratinib and hydroxyurea for a while but my doctor took me off of the Fedratinib in October. Last night I had the strangest experience. I went to sleep at my normal time but I was woken up at about 1:30 AM by extreme pain in my legs and my arms. I also had terrible chills in which my teeth were chattering and I had to ask my partner to put 2 extra blankets on me. I took a quarter of a CBD gummy to reduce the pain but it actually helped with the shivering. I did bloodwork yesterday but the results are still not available. Has anyone else experienced bone pain? What did you do to alleviate it? I’m so nervous that I have progressed because it was a whole new experience for me.

[Mandy-moo74]

Hi Cja1956I sometimes get deep bone pains in my legs it is usually one leg and always the same leg. It is dee wishing the bone and nothing seems to help not massaging or anything so I have to take 2 paracetamol which does eventually help but it does come back again and there seems to be a pattern, I will get it for about 3 ish days then it goes but does always return periodically. The paracetamol also helps with fever chills and like you I also get it bad that my teeth are chattering as if I am freezing temperatures. I usually take paracetamol for this when it happens and it does seem to work, very strange and slightly scary isint it

[SoledadBarcelona in reply to Mandy-moo74]

I think your lower temperature maybe due to your thyroides, check totally it. Bone pain is lowering with Besremi, in my case.

[Cja1956 in reply to Mandy-moo74]

Thanks so much, Mandy, for your reply. Yes, it was very scary. I have a Tele health appointment with my doctor on Monday and I’ll see what she says. I don’t know why I didn’t try paracetamol (we call it acetaminophen in the US) but it’s a good idea.

Take care.

Cindy

[Foodies]

Hello. I to have ET and experienced bad bone pain for over a year. At a consultation with haematologist in December it was decided to put me on Allopurinol 200 mg daily. This has reduced pain 99% of the time and overall well-being. It does have side effects, mainly more extreme fatigue. However this has eased and certainly my night’s sleep is much better. Best of luck. Eilis

[Cja1956 in reply to Foodies]

Thanks so much for your reply. I will bring it up to my doctor on Monday.

All the best,

Cindy

[SoledadBarcelona]

Check your thyroides completely and yes, I had bone pain but Besremi stops it, fortunately.

[Cja1956 in reply to SoledadBarcelona]

Hi, Soledad, thanks so much for your reply. I’ve had my thyroid checked many times over the years, but so far, it’s fine. I guess it wouldn’t hurt to check again. Also at my last appointment, my doctor mentioned going on Peg interferon, so I will discuss that with her on Monday.

Thanks again,

Cindy

[SoledadBarcelona in reply to Cja1956]

Check total thyroides: TSH, T4Free, T3Free, T3reverse and antibodies and inflamatory markers susch us homocisteine, etc. Careful because the doctors only check TSH no more and we need all of them.

[Cja1956 in reply to SoledadBarcelona]

That’s really good advice. I will definitely talk to my doctors about it.Thank you.

[Otterfield]

I'm really sorry to hear about this. Last May I had severe pain in my knees (I had pain anyway but this was excruciating) and dreadful chills and shivers. It turned out that I had an infection and it developed into a very bad stomach bug, which turned out to be campylobacter. It could be worth getting yourself checked for infection. Whatever it is, I wish you a swift recovery. It's so frightening having this disease and I think we all tend to be anxious that new symptoms are a sign of progression.

Very best wishes, Jennie

[Cja1956 in reply to Otterfield]

Thanks so much for answering, Jennie. I especially appreciate it knowing everything you’re going through at the moment. I have a Tele health appointment on Monday, but maybe I’ll try to change it to an in person visit. I had been doing so well for months so this was totally out of the blue, so obviously very scary.

Thanks again for your concern. I’ve been thinking about you and your upcoming SCT. and wishing you only the best. 🙏🏼

Take care,

Cindy

[hunter5582]

Sorry t hear about this turn in events. It sounds like a change in treatment plan is in order. This would be a good time to get a second opinion form a MPN Specialist.

I think you already know that pacritinib (Vonjo) was just approved by the FDA for MF. This does appear to be a good option for some people who have not responded to fedratinib. Perhaps it would be worth reviewing this option with your MPN Specialist.

Wishing you success on a new treatment plan. thought and prayers headed your way.

🙏

[Cja1956 in reply to hunter5582]

Thanks so much, Hunter. I had bloodwork done on Thursday which I haven’t gotten back yet. Hopefully on Monday I will know more. I believe pacritinib is for those who’s platelets are falling and i have the opposite problem. But I will discuss that option, as well, with my doctor. Thanks again and all the best.

Cindy

[hunter5582]

You are correct the pacritinib has less impact on platelets. It may still be an option as part of a combination therapy. Mostly it is one more tool in the arsenal to consider.

Hope your labs reveal something useful in looking at new treatment options.