Bone pain

[Skye333]

Hi does anyone suffer with the bone pain associated with PMF. I am have early stage but recently I have had some pain deep in my arms. It’s not all the time but I have had it quite bad today.

Janet x

[socrates_8]

Hi Janet...

I was originally diagnosed as ET in May 2016. That later changed after a BMB result to Post ET - Myelofibrosis. I have been on Ruxolitinib ever since then, and on occasion I have tried reducing my dosage from 25mg/bd to 20mg bd.

I often have pain in my shoulder, arms, wrists, hands and fingers. I also have periodic vey nasty back pain (associated I believe to osteophyte grows on my vertebrae). I also have some leg pain but mostly RLS (restless leg syndrome). Does make it tough to find a decent night's rest w/out some sort of artificial assistance.

Unfortunately, I have also found that such reductions, (as mentioned above), are usually accompanied by increased bone/joint pain. Par for the course, I believe... Along with my skyrocketing platelets...

Sorry Janet... perhaps not the message you were hoping for. I hope you find some respite...

Best wishes

Steve

(Sydney)

[Skye333 in reply to socrates_8]

Thank you Sydney, I was wondering if it might be something else but as it seems to change from one bone to another I began to think it’s part of MF. I too have horrendous RLS but I’ve had it for years long before my diagnosis along with the awful itching after a shower. I’ve never mentioned that to my Haematologist but I will next time I go. My bloods have been ok so far so I’m not on any treatment.

Janet x

[socrates_8 in reply to Skye333]

Janet...

Hi again... Do you partake in any strenuous exercise?

If so, it might just all be muscular pain that you are experiencing...(?)

Just a thought...

Best be guided by your medical team as they are trained to know such things etc...

Cheers & best wishes

Steve

[Skye333 in reply to socrates_8]

I do walk and have a cross trainer but I’ve never experienced this kind of pain before. It’s nothing like muscular pain.

Janet x

[SuET2017]

Hi Jane. I was diagnosed with ET almost 2 years ago and get bone pain on and off all the time (it was one of the reasons I went to the doctors pre-diagnosis) My haematologist has said it is not a symptom of ET? I’ve had a bone density scan which is all fine. So I don’t know? Sorry no help but relate. Sue

[Simon96]

Hi Janet, I am a PMF'er too. JAK2+. I have not had bone pain like you describe. Lots of posts on here do talk about bone pain. Even so, if I started getting new pain like you are describing, then I would head down to my GP to discuss it. Re the after shower itching. I get that also. I am quite temperature sensitive and find that showering in the warmest part of the day works best for me. I also avoid flowing air until fully dry. Best wishes ...Simon

[Skye333 in reply to Simon96]

Hi Simon I too find that showering later in the day lessons the itching.

I really don’t have any confidence in my GP. When I told her about the after shower itching she prescribed me some eucerin cream for dry skin. I don’t have dry skin.

The GP’s at my surgery are rubbish when it comes to my MF. When I tried to discuss it once with them when I said I wondered if what I had gone with was linked to MF she said “you mean MS” don’t you” !!!!

Janet x

[Simon96 in reply to Skye333]

Hi Janet, disappointing that your GP mixed up your medical history. My GP once prescribed lotion for my itching also. It was not effective however it was nice that she was trying to help.

I doubt the GP's at my surgery know much about PMF either, nor would I expect them to, just awareness so they can refer patients to a haematologist. We may be the only PMF'ers our GP's every see in their careers.

I do not assume that any issues I have are related to PMF. If my GP does not know but thinks an issue may be then I feel my GP should confer with my haematologist, otherwise I risk falling through the cracks of a silo'ed medical system.

Wouldn't it be nice if we could only suffer from one medical condition at a time and therefore we only needed one doctor at a time. Unfortunately not.

Hope you pain has been reducing. Best wishes on finding relief ...Simon

[Skye333 in reply to Simon96]

I suppose you are right Simon but I would like to think if I was a GP and one of my patients developed a rare cancer that I would still be interested enough in my career to read up,on it and at least have some basic understanding. We feel. Alone enough to start with. If it wasn’t for this community I would be totally depressed......

Janet x

[Indigo42916 in reply to Skye333]

You are so right Skye. I go to doctors and have to educate them, it is exhausting. Why can't they take a few minutes to Google it!

Very frustrating indeed.

[jane13]

I have MF and bone pain, also had this at earlier stage when my PV very active and turning into MF.

There is lots about this on US sites e.g. Mayo clinic but some UK haems have never heard of it.

Internet suggests there may 2 causes

a) when your bone marrow is very active and producing lots of cells there may b pressure which causes pain

b) at the MF stage when your bones have little marrow the lining of the bone may become inflamed, causing pain

I am just repeating what I have got off the web here

I suspect we generally understand little about how MPNs affect some body cycles e.g. iron, some blood proteins

Sorry this is not much help: it's driving me nuts but doesn't seem to be much to be done apart from dose of something at night to help sleep

[Skye333 in reply to jane13]

I will look them up Jane thank you. I suppose I am a bit shocked that I could present with bone pain when my bloods are ok.

Janet x

[jane13 in reply to Skye333]

Hi yes, I think that's what many haems automatically think too: but the 2 possible causes above are independent of yr blood counts.

Mind u we all probably think anything odd is caused by MPN: it may not be!!!

[Indigo42916]

Skye,

My understanding from attending a patient conference, bone pain is real. When the bone marrow is over producing inflammation is produced, which causes swelling and we'll bones can't expand. It is more common in the long bones, arms and legs. Interestingly, the extra marrow, gets pushed down to the long bones, since it is mostly in the sternum and pelvic bones, and has no place to go.

I struggle with bone pain too. Waiting to see an MPN specialist to find out how to manage it. My hemo told me it was not related, big sigh!

Take good care, this group is amazing!

[clevemic]

This sounds crazy, but my oncologist recommended taking Claritin for MPN-related bone pain. Claritin is an allergy medicine, that can be purchased without a prescription. My doctor is a specialist on MPNs, and speaks all over the United States in regard to these cancers. I trust her completely, so I tried it. IT WORKS! Wishing you the best.

[Skye333 in reply to clevemic]

Hi Clevemic that certainly does sound crazy but you know sometimes it is things like that works the best. I will be trying it so I’ll let you know how it works....

Janet x

[Norman45]

Hi Skye,

I’m post ET MF and have been taking half dose Ruxolitinib for 18 months with very stable but low blood counts on platelets.

Dealing with the itching first. I suffered badly when on HU/Anagrelide for ET and Heartlands Hospital Birmingham prescribe Ranitidine, the other name for Zantac. It’s an antihistamine and soon cured the red, burning patches down my legs and other unmentionable areas!

When I went onto Ruxolitinib they also prescribed Acciclovir, an anti-viral drug. Apparently Ruxolitinib can trigger the Herpesvirus which is dormant in most people and Acciclovir is the best treatment to counter this.

After a few months of taking both Ranitidine and Acciclovir I asked the question did I need the Ranitidine and was told to leave it off. Have not suffered any recurrence of the leg itches for over a year since dropping Ranitidine so I presume the Acciclovir is doing the same job.

Regarding the bone pain, it seems to be part and parcel of having MF; not everybody gets and the intensity varies person to person. In my case I can get severe pain in my shins and right forearm when I get into bed at night and am trying to get off to sleep. I just grin and bear it being a man who wants no fuss!!!

Hope this helps a little.

[Skye333]

Hi Norman45 a lot of what you say I can totally relate to. I also have bone pain in both my forearms especially when in bed.

I will mention all this to my Haematologist when I see him next month. I am really hoping that starting with these symptoms doesn’t mean my bloods have gone haywire.

Janet x