My just diagnosed 3 weeks ago

[Preston25]

Hi everyone this is my first post, I am 57 and just been diagnosed with mf, I have horrendous pain in my right chest, under shoulder blade, under arm and my right arm since September 2021 I am about to start nxt Tuesday ruxolitinib if the hospital has it in stock should have been last week. I have just been reading about gout is common with my, I am now wondering if this pain is gout and crystals that have formed on my joints, my question is: is there anybody else suffering the same and is there any one taking Allopurinol for the gout alongside ruxolitinib, if so how long and any side affects from the two together. TIA.

[hunter5582]

Hello and welcome to the forum. Glad you decided to post here.

Shoulder pain can be tricky to figure out. One of the challenges with MPNs is to figure out what is related and what is not. Even "unrelated" issues can interface with the MPN. Just as it is important to consult with a MPN Specialist about your treatment for MF, it is important to consult with a shoulder specialist about the issue you are having with shoulder pain.

It sometimes requires a specific type of MRI to properly assess a shoulder issue. I have had to do this for both of my shoulders. In my case, torn rotator cuffs were the issue. Note that the systemic inflammation we experience with MPNs can also impact this kind of issue. In addition, inflammation from an injury can cause reactive thrombocytosis.

I would not assume that the issue is gout, though that is possible. If that is the case and you need to use allopurinol, here is the drug interaction warning from epocrates.com .

Monitor/Modify Tx

allopurinol + ruxolitinib

monitor CBC: combo may incr. risk of myelosuppression (additive effects)

The issue of drug interactions is always something to pay attention to and run by your MPN care team.

[Otterfield]

I'm afraid I can't offer any wisdom on your pain but I would like to say welcome to our forum. I also have Myelofibrosis and I remember how frightening and unsettling it was when I was diagnosed. Best wishes, Jennie

[Rachelthepotter]

Hi PrestonGlad you found the forum. I have MF and have been taking ruxolitinib ( which , sadly, now makes me anaemic, and gave me skin cancers - I had previous sun exposure- so I’m now in search of an alternative) plus allopurinol for 6 yrs. now. Time flies. I’ve also had occasional bouts of horrendous chest pain : not fun when driving. No real diagnoses except not heart attacks. Renal colic was one suggestion.

The Wikipedia article on myelofibrosis is good and has useful links.

The drug interactions between ruxolitinib and allopurinol in my case haven’t caused problems. I also take a statin atorvastatin 20 mg twice a day- now known to have useful anti inflammatory properties as well as keeping cholesterol OK.

Hope all goes well for you - do keep in touch.

[Wyebird]

Hi and Welcome, it’s a huge shock when first diagnosed. I’m sorry to hear that you are suffering pain. I’m extremely lucky I have fatigue but not pain. We are all different and react to medication differently. You must tell your doctor about these pains. Good luck

[Heidi-W]

Sorry to hear about your recent diagnosis and really hope the Rux helps to make you feel better.I'm not sure if you have had bloods done regarding the pain but your GP can easily check your urate level for gout- it definitely is less likely to appear in joints like the shoulder 1st and more classically will show up as a big red hot very painful to touch joint-often in the toe/elbow etc. The other thing is you can get referred pain up to the right shoulder from gallstone issues. Not sure if you have had an US scan of the abdomen to check your spleen size but they can check your liver and gallbladder then too which will be helpful.

UK GPs often don't have access to MRI scan of the shoulder but they can get x-ray and US scan which will pick up any rotator cuff tears so good luck and keep us posted re your progress. Might be helpful to get a Chest X-Ray if you've not already had one.

Best wishes

Heidi (post PV MF patient and GP but likely having to ill health retire due to the exhaustion/pain/brain fog issues)

[Mazcd Partner MPNVoice]

hello Preston25, welcome to our forum. So sorry to hear that you are experiencing this awful pain. I hope that the information on our website is helping you to learn more about MF, mpnvoice.org.uk

Best wishes, Maz