Muddled

[Anouchka]

Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV.

Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau. The specialist said not much can be done or taken and possible duecto my PV treatment but that if the pain wasn’t hampering my daily activities to keep going with mild exercise and walking. The only “solution” but not a cure might be gel injections of hyoloronic acid.

is there anything I need to know about any reactions vs Jakafi (since I can’t find any info on that)??

Apologies for the long post and TIA for any insights and valuable help that are always available here through all you wonderful people. Much appreciated.

[hunter5582]

I have never heard of any relationship between Jakafi and Vit D deficiency. When I just looked, I did find this interesting article about a link between JAK2 mutation and Vit D deficiency. ncbi.nlm.nih.gov/pmc/articl...

I have a vitamin D deficiency that is thought to be related to another condition, Neurofibromatosis Type 1. I also have deficiencies in Vit B/folate and magnesium. This is not uncommon for people with GERD who take PPIs to treat. I take supplements to deal with all of the above nutritional deficiencies. I would not suggest taking supplements without first checking to see if you need them. This is a simple blood test any doctor can order.

Like you, I have osteoarthritis in the knees. I am treating as needed with hyaluronic acid gel injections into the knees. This has been very effective, restoring me to full function with almost no knee pain. The treatments seem to last about 18 - 24 months. Note that I just switched to Durolane, which is a newer formulation that is supposed to last longer.

Wishing you all the best.

[Anouchka in reply to hunter5582]

Thank you , Hunter. That has put my mind at rest. The specialist advised the D3 and it niggled the brain cells to this site. I will pursue further with both my GP and Haematologist, whom I’ll be seeing before the month is out.

Your experience with the injections is sldo very heartening news.

Wishing you all the best too and thank you once again.

[SoledadBarcelona in reply to hunter5582]

Hello,

I am going to write about the relationship, general speaking, bones and MPNs:

Myelofibrosis in myeloproliferative neoplasms with mutations such as JAK2V617F is an unfavorable sign for uncontrollable disease progression in the clinic and is complicated with osteosclerosis whose pathogenesis is largely unknown. Because several studies have revealed that macrophages are an indispensable supporter for bone-forming osteoblasts, we speculated that macrophages might play a significant role in the proliferation of collagen-producing myofibroblasts in marrow fibrotic tissues and here vitamine D can helps. No related to interferons for the moment.

pubmed.ncbi.nlm.nih.gov/307...

[Luthorville]

Is the vitamin D deficiency related to the drug or that half the adult population is already bit D deficient?

[Anouchka in reply to Luthorville]

I think the specialist was trying to tell me to either check my levels or start taking it …

[Ovidess]

I had harsh arthritic like symptoms suddenly rear up a few months back and too (still taking) oral Hyaluronic Acid with MSM. My lower joints felt like they did not want to support me, and my feet hurt when I walked. Those symptoms backed off nicely, due to supplements or fate?

[Anouchka in reply to Ovidess]

Thank you for replying. I’ve started taking that too. 🤞🏼🤞🏼

[Spanelmad]

I've recently started taking vit D again after a breaking 2 years .Figured since I'm using higher sun factors and covering up better supplement .

[Anouchka in reply to Spanelmad]

Thanks for replying. That’s good thinking as well as a great tip. Thx.