MPN struggles

[WelshJess]

Hi, so I was diagnosed 2 years ago with an MPN. Orignally they said it was ET, but after a bone marrow biopsy they have left me as unspecified. As I have traces of ET and MF. My platelets have continued to climb, but had a random illness (hospitalised) that made them drop from 980 to 460. This was never investigated and has left me with so many questions. Like is this normal??

I got diagnosed due to having pain in my leg and fatigue both of which I suffered with whenever I ended up anemic as a child. So blood tests etc and got diagnosed with the MPN. Since then I have been bombarded with information, but no-one is answering my questions. I have had brain scans, back scans and nerve and muscle tests on my arm. But nothing to investigate my leg. As they claim it is unrelated to the MPN. Yet I have read that bone pain in the leg is one of the most common symptoms. They started my on hydroxycarmbamide. Which lead to extreme constipation. But yet again I was told this is not related to the medication. So I discharged myself from my care team.

So basically I am hoping there is someone out there that has had similar experiences. That can help me to find the best remedy to manage the pain. I have got a new team starting in 2 weeks. But I am not feeling hopefull after the crap my previous team have said.

Sorry for the long message I have battled this for 2 years with nowhere to turn for answers.

Thanks for reading.

[Cat1001954]

I suffer with leg bone pain and was told this was a symptom of ET. Plus I get constipated at times

[WelshJess in reply to Cat1001954]

Is there anything you do to relieve the pain? My doctor just kept refusing to listen. I have been told I can't take anything stronger than paracetamol. So Im taking CBD oil. But even that isn't doing alot.

[Mishie14]

Gosh, what a rough start to your journey. Very glad you are moving on to a new care team which hopefully is knowledgeable about MPN. Is there a MPN specialist in your area? Leg and joint paint most definitely can be a symptoms! I think the two biggest side effect complaints are about that pain and overwhelming fatigue. Depending on which drug therapy is used, a whole new world of drug side effects are also possible to make things more challenging. Luckily there are options and you may find trying a different one works better, or not. There are some good supplements to assist but some things just don’t get appreciably better. It seems standard for starting on hydroxyurea, then anagrelide then an interferon. Didn’t work for me. Should have gone straight to interferon but I was not versed in MPN then. Who knows what is the best approach for you—we’re all different. The drugs are all different in how they address platelets and are in order of increasing cost. Regardless a treatment plan is needed that meets your goals for quality of life while addressing platelets and progression. You are your best advocate. Stay vocal and stay focused. Good luck.

[WelshJess in reply to Mishie14]

Thank you for replying. Honestly Im at my wits end. I was also under the apparent lead professor of MPN in the UK but I didn't get to speak to her she went through my haematologist. My haematologist never listened or gave the right information so I feel like the professors knowledge of my struggles was limited. Trying to get hold of any medical professionals has proven more difficult than the actual illness itself. I have actually started the complaints process against my previous team due to them causing me to fall in my mental health battle. So hopefully I found my voice now to actually demand some answers.

[LittleLuna]

Hi. Have you look at the MPN Voice website? Worth touching base with them. You can also asked to be linked to an MPN Buddy for support. mpnvoice.org.uk/about-us/

Lots of reading and support here and this forum is awesome.

Don’t give up. I think main thing is to speak with an MPN Specialist. For the appointment you are waiting on, you could call them and ask is it an MPN Specialist you are seeing. There were none in my hospital so I paid for 2 private MPN appointments and it was well worth it.

Worth looking into as this is a life long condition so you need to have the correct care plan with a medical team who have an expertise in MPN or at least are referring with other Specialists

I have had a multitude of weird and wonderful symptoms, not all the standard top 10 symptoms. Also important to check when you have pain/issues and not always put it down to MPN.

I hope your next appt is better. Do not be afraid to ask questions and stand up for yourself. There are lists of questions to help you on MPN Voice webpage

[PupsBestFriends]

I don't think I've experienced bone pain with my MPN, but I agree that chronic pain can drive you mad. For real.

Therapeutic quality essential oils can provide significant pain relief. Oils indicated for bone pain include wintergreen, cypress, fir, spruce, pine, peppermint, and helichrysum. Since these oils are concentrated please research safety precautions before using. Topical application typically involves diluting with a carrier oil. If one oil isn't effective, try another until you find relief.

Meditation can also be an effective pain management technique. My favorite is White Skeleton meditation, but again do what works for you.

Hope you find relief, and receive the care you deserve with your new team. Seems like some physicians want a quick fix to treat us, then deny our symptoms are related when we still suffer. Wish they would just be honest, and admit that they don't know, and can't fix, everything. Wish you well.

[hunter5582]

Sorry to hear about the struggles accessing appropriate MPN care.

The answer to two of your questions are very clear. YES - MPNs cause bone pain, particularly in long bones. YES - HU causes constipation. It is a common side effect. I experienced that myself when I was on HU.

You made a good decision to dismiss a treatment team that was not providing you accurate information. It is important to find a new treatment team with the expertise that you need. This team needs to include a MPN Specialist. Here is a list. mpnforum.com/tsr-the-list/

Here is a bit of information on bone pain.

pvreporter.com/bone-joint-p...

patientpower.info/myeloprol...

[Exeter21]

If you are UK contact the excellent MPN Team at Guys Hospital London under Professor Claire Harrison. You can telephone or email your problems . They are the experts in our blood diseases. It is irrelevant where you live in UK they are always welcoming with advice help & understanding . 👌

[WelshJess in reply to Exeter21]

My haematogist was discussing with Claire Harrison all the time, but was clearly not giving correct information. Claire is sort of keeping track due to MPN being diagnosed in 4 of my family members within the last 3 years. That includes non blood related family.

I will have to see if it is possible for me to contact her again. Once I have found my voice with my new team.

[Jenkinstein]

Dare I ask which hospital you were under? I'm also in Wales and can't fault mine at RGH Medical Day Care unit. (so far touch wood!).

[WelshJess in reply to Jenkinstein]

Hey sorry my name is probably misleading, I am welsh but live in England. So under english doctors.

[LT55]

I was also diagnosed with ET. A BMB done several years later was unspecified and showed characteristics of pre-fibrotic MF and ET. After speaking to my MPN specialist, he said that the the finding from the majority of BMBs is unspecified. In my case, he said that the BMB results plus other findings (bloodwork, symptoms) continued to point to ET. And he further stated that either way the treatment - at least at this time - would be the same. I sometimes feel like with an MPN, we are in a ongoing state of uncertainty. What is the diagnosis? Is it progressing/changing? I am trying to take things one day at a time, with some comfort in the knowledge that generally nothing moves to fast with an MPN.

[WelshJess in reply to LT55]

So I was under the impression it doesn't move fast too. But I feel like so much has been ignored with mine. My platelets were above average from 2016 but didn't get diagnosed until 2022. But my platelets still sat around 480 from 2016 until 2022. As soon as they started me on clopidogrel my platelets were climbing. They got to 980 within the first 9months. Which to me shows a very fast climb. But my team were not communicating with me. So I have no idea what to expect or if this is normal or anything. The only information I have on the illness is from research I have done myself.

Hopefully my new team will give me information of what to expect. Even though I know everyone is different and it is a very much wait and see condition. Just a basic understanding and having someone listen to what I struggle with would be nice.

[LT55 in reply to WelshJess]

So sorry that you are not getting the care and support you need. Very frustrating!

My platelets were > 400 from 2008-2015 before I was referred for further evaluation - so my diagnosis not until 2015 (but likely had ET for several years before the diagnosis). Unlike you, however, I have had a great care team since diagnosis and been able to get my questions answered. I wish you luck. The uncertainty is very difficult for sure. Hugs