Aching throbbing hips and legs and feeling tired

[Blonde25]

Hi everyone

Does anyone else who has polycythemia Vera experience throbbing in their hips and legs and feeling tired

I've been having this for a while and having to take pain relief . Im hoping the interferon injection will start to kick in

Thanks in advance

[Dottiedot]

Morning I also get this its really painful.this has worsened in the last few months, however I'm only on aspirin due to bad side effects of peg. I didn't even think it could be related to the pv certainly I will ask on my next appointment

[Blonde25 in reply to Dottiedot]

Thank you for your reply , it is painful I was getting this before I started peg so I'm not sure if the peg makes it worse or better but this came on again after taking the injection. 3 days in and it's not has bad this morning, but the tiredness is really getting me down .

I'm going to ask at my next appointment on the 24 march , I hope you start to feel better soon

[Looolooo in reply to Blonde25]

Yes, but turmeric sorted it out within a week. Try it, it amazing stuff.

[Blonde25 in reply to Looolooo]

Thank you , fresh , powered or capsules and what strength is advised ?

[SarahPV in reply to Looolooo]

keep meaning to look into it. Do cook with it but not daily. Do you recommend a supplement please? Thank you

[hunter5582]

I have had similar issues related to the systemic inflammation that the JAK2 mutation causes. I have had the most success with Turmeric (Curcumin) supplement. It has worked better for me than any NSAID I ever tried and with far fewer side effects/risks.

If you are interested, it is important to select a bioavailable formulation. Curcumin does not pass readily into the bloodstream. Some supplements are worthless. Do note that anything that is biologically active enough to help you can also hurt you and interact with things. That is why I consult with an Integrative/Functional Medicine doctor. Many docs are unfamiliar with complimentary health interventions and it helps to seek expert guidance. I also be sure to let my care team know what I am taking.

Wishing you all the best.

[Blonde25 in reply to hunter5582]

Thanks for that information Hunter .

I have looked up a recipe to make my own turmeric Shot , its fresh turmeric fresh lemons or oranges, black pepper to help with the curcumin to be absorbed and water . Blitz it in a liquidiser . Thought it worth a try . I'm not great with the capsules the coating irritates my stomach .

I will check it doesn't interact with the peg injections

Hope your keeping well 😊

[hunter5582 in reply to Blonde25]

That sounds worth a try. Some shots are quite tasty too. Suggest checking with someone with expertise in homemade blends like this. You may want to ask about piperine extract, which is what is in black pepper that enhances absorption. This is not something I have ever tried. amazon.com/Piperine-Extract...

If the shot does not work, the capsules I use could easily be opened and mixed into a drink. I would check with a professional on that too, but can't think of why it would be a problem.

Definitely check with a medical professional who is familiar with supplement-medication interactions. That is not all docs. It is why I consult with an Integrative/Functional Medicine doc. Here are two resources that can be used to check yourself.

reference.medscape.com/drug...

mskcc.org/cancer-care/diagn...

Wishing you success with turmeric.

[Blonde25]

Thanks for the information hunter you are a valuable source of knowledge and I am very grateful. I will let you know how I get on with the turmeric shot x

[pepper-]

lifeextension.com/search#q=...

You can give this one a try. I have PV and use it when I don't prepare a meal that incorporates organic turmeric spice powder and organic black pepper.

Here's a more complete discussion worth a read:

nutritionfacts.org/2022/04/...

[Blonde25 in reply to pepper-]

Thank you