Hydroxy, shoulder and back pain

Awful pain in my left shoulder and consistent lower back pain lm sure its linked to Hydroxy that lve been taking for around eight months.

[hunter5582]

it is possible that it is related to the HU, but that is an AE we do not hear much about. Here is the reference.mayoclinic.org/drugs-supple...

Suggest you review your concern with a MPN Specialist. Other docs may not be familiar with this as a potential side effect.

[Hidden in reply to hunter5582]

Thank you Hunter l will check this with my consultant, feeling nervy about changing from Hydroxy to possibly Bulsaphan as this has been suggested by him. Awaiting an appointment and second opinion from Guys hospital London. Feeling hopless ( as a result of pain) but optimistic for less debilitating side effects. 👍Adiewon

[hunter5582 in reply to Hidden]

Getting the opinion from a MPN Specialist is definitely a good idea. Regarding options other than HU for treating ET, there are several. I believe you already know that PEGylated Interferon is the other first-line option for ET. Ruxolitinib and anagrelide are also options. Usually they are considered before busulfan, which is also an option. mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

We all react differently to each of these meds. I was unable to tolerate HU, having toxicity even at very low doses. So far, I am tolerating PEG-IFN without any problems. (hoping that stays the same). Others tolerate HU without serious problems. Some people cannot tolerate PEG-IFN.

It is all about figuring out the risk-benefit profile for each medication choice for each of us individually. I believe you have had an issue with thrombosis and need to treat the ET with cytoreduction and anti-platelet therapy. Reviewing your options for each part of the treatment plan does make sense. Warfarin can also have side effects, which can include joint pain. drugs.com/sfx/warfarin-side... .

Hope you get it all sorted ASAP.

[mhos61]

Do you have a CNS you can have a chat with?

It might also be a good idea to get this checked out with your GP too, just to rule out anything unrelated to your MPN or indeed hydrea treatment.

[Hidden in reply to mhos61]

Thanks for helpful sensible advise will do..

😀 Adiewon

[Cja1956]

Back pain and shoulder pain could be other things like arthritis, herniated discs, bursitis, etc. I had debilitating hip and leg pain last month and it turned out to be a herniated disc. I’ve been in physical therapy and it had helped tremendously. Perhaps you should see an orthopedic doctor and get some X-rays to see why you are having pain.

[Hidden in reply to Cja1956]

Hi Cja thanks, just got an appointment with a physical therapist what a releif lve been struggling for a couple of years with these issues,lockdown,weight gain and meds only made things worse. Anyway enough moaning from me lm beginning to feel more optimistic and looking forward, l recently joined the weight support programme, that's got to help right..Wishing you well Adiewon

🙏🙂

[Cja1956 in reply to Hidden]

So happy to hear you’re being proactive about your health and that you’re feeling more optimistic. That’s half the battle. It’s so easy to blame our MPNs for various health issues. I wish you all the best.

[billybrock]

I have MF which has caused my spleen to enlarge. A symptom I have is pain in left shoulder.Do you have an enlarged spleen?

[Hidden in reply to billybrock]

Wow Billybrock lm not sure about my spleen, how would l go about finding out and what do you do to manage this. 🙃Adiewon

[billybrock in reply to Hidden]

Dear Adiewon2.You need to ask your consultant if an enlarged spleen is a symptom of your mom. If yes, then you need an ultrasound of your tummy to confirm.

I have MF and an enlarged spleen and the Ruxolitinib treatment should help reduce the spleen.

Billybrock

[Hidden in reply to billybrock]

Thank you Billybrock.

[Meatloaf9]

Hi Adiewon, I would recommend that you consult with your local hematologist or an MPN specialist preferably. A check with your GP might also be in order. There are so many possibilities that you need a competent physician to help you with this problem. Good luck to you in solving this issue.

[Hidden in reply to Meatloaf9]

Thanks meatloaf will do.Adiewon