ET

[Windy51]

Hi does anyone have pain with ET I do a lot what can I take for pain when on Hydrea

[Mazcd Partner MPNVoice]

hi Windy51, sorry to hear that you are experiencing this pain. Ask your GP for advice on suitable pain relief. Best wishes, Maz

[Windy51 in reply to Mazcd]

Hi thanks Mazcd I think this hip is Sciatica I put a cold pack on it through the night and it helped for awhile ever since I got this ET I have had a lot of pain in different places the one in the chest that radiates through the back is uncomfortable and I get a bit shoe of breath and having height platelets I was told it’s all what comes with it hopefully Hydrea will make me feel better soon I have only been on them for 6 days

[Windy51 in reply to Mazcd]

Only allowed Panadol but the Hydrea has helped it

[Windy51]

Yes thanks

[Scrollernut]

Can’t say I actually have pain but sometimes just a feeling of body discomfort and yes, shortness of breath along with extreme fatigue. Been on 500 mg for about 6 weeks with ET and JAK2 positive.

[Gaithersburg]

I have ET and take 35mg of amitriptyline before bed for pain relief which gives me just that and undisturbed sleep - bliss! A rheumatologist prescribed it for me saying I had fibromyalgia but I don't believe I do as I have hip impingement, a bad shoulder and lower back pain. Hope this helps you as it has me. I now can play tennis and remain active and pain free! Lisa

[hunter5582]

Noted that you referenced sciatica as a source of pain. There certainly are meds you can take for this while in HU. The HU is not going to help with this issue, but will not interact with many potential interventions for the pain. You do need to talk to your docs about this.

Do note the role of inflammation in MPNs. Many of the secondary symptoms experience are thought to be related to the dysregulation of the JAK-STAT pathway and the impact that has on the production of inflammatory cytokines . Dealing with systemic inflammation can be very important for many of us with MPNs who deal with secondary symptoms related to inflammation. I have found some things that help and continue to pursue strategies to deal with these issues/symptoms. Hope you can do the same.

All the best.

[Wakeboarder]

Hi

Yes I had a lot of pain (sharp pains up my legs and dull back pain). My ET was diagnosed last year and the pains had been going on and getting worse for 2 years. As soon as I went on hydrea and the platelets started coming down it got better.

Doctor said it was erythromelalgia - then it all made sense!!

Might be worth exploring this?

Hope you find out what is causing your pain xx

[Minu68]

I've had bone pain, went to doc about that years before my recent ET diagnosis. It has gone since starting on hydroxy, I notice it is gone as soon as platelets go below 600 or so, in my case. Because the bone marrow is working all the time, rather than only when needed, is what I have come to understand.

I also believe the ET can worsen or cause inflammation, that is why my hip arthritis went from mild 2 years ago, to needing a total hip replacement..... There's been no other reasonable explanation, so I believe it is down to that. As Hunter says, do look at inflammation issues, and consider following an anti inflammatory diet.

I also have sciatica, and it's definitely worth talking to your doctor about pain relief.

Good luck with tackling all the side issues that come with our main condition x

[Wyebird]

Hi, I’m really lucky . I have ET and I don’t have pain but I do get short of breath when tired.

[Hidden]

Hi Windy51

In 2005 I started to get unexplained Neuropathic pain in my thoracic 6/7 region. I also had pain in my lumbar spin but I just lived with that. The thoracic pain was aggravated by stranding and sitting. It felt like undergoing child birth on a daily basis. Other than the other night when I had a dreadful attack that my Tramadol would not touch, I eventually took some Lyrica, a hot water bottle, wheat pack and a number of boiling hot showers. It worked. Somebody commented that stress can aggravate the pain and they are 100% correct. I call Lyrica 'the silent wonder'. I have been taking it since it came off clinical trials. I could barley afford it but it eventually made the Australian PBS Government funded list and now instead of $180, $140, $118, I pay around $39. I have recently halved my dose so I now take 150mg each morning in combination with 200 mg long acting Tramadol which I have also recently reduced down from 300 mg. I also take rivitrol, I only need it when the pain in my thoracic region flares up. It doesn't take all the pain away but it is the best control I have ever had. I don't sit or don't stand for long simply because it aggravates the pain. When first starting Lyric it has serious side affects. I recall my face would drop into my dinner. Preserve, in combination with a pain med it may work for you. You will need to go to a pain clinic, doctors are not generally to well informed on chronic pain. I was told that the cause could be a small clot in the vain restricting oxygen to the nerves in the spine. All the best.

Anna

[2tessiE]

Hi Windy,

Thank you for posting I'm very interested to see your question and the replies about pain as this is something that's been affecting me a lot more recently.

I have PV JAK2 and taking hydroxycarbamide and asprin.

Im currently getting a lot of discomfort in my chest and abdomen and weird achy tingly sensations in my hands and wrists after slightest exertion.

Drinking more water seems to help a bit..its just hard not being able to do as much as I would like.

Also I have lost a lot of fitness since shielding so this probably not helped. Does anyone else have similar symptoms? Appreciate your comments. Thank you.