inflammation and ET HU

[Digger031145]

How do we treat inflammation ! ?

[hunter5582]

The overproduction of inflammatory cytokines is a core aspect of MPNs symptoms and management. There is unlikely to be one size fits all interventions.

Some have had success with an anti-inflammatory diet, most often a Mediterranean Diet. There is some research supporting he use of N-Acetylcysteine (NAC).

I consult with an Integrative Medicine doctor for this specific issue. She recommended a combination of curcumin, L-Glutathione (alternative to NAC), and a Proresolving Mediator (fish oil derivative). The curcumin in pariticaly makes a significant difference in the osteoarthritis symptoms I experience.

Suggest consulting with a MPN Specialist rather than a regular hematologist on the issue of managing inflammation. If you wish to consider complementary health interventions, then consulting with an Integrative or Functional medicine doctor can be very helpful.

Wishing you success moving forward.

[Digger031145 in reply to hunter5582]

Thank you hunter5582 .

Professor Harrison knows I have inflammation but doesn’t relate it to my ET.

At her suggestion I was referred to a Rheumatologist. I can’t take cucurmin as I’m on warfarin . Likewise I can’t take Omega 3 or anything which will thin the blood due to the warfarin..

Are you in UK? Where on earth would u find an intergrated Doctor who understands ET?

I’ve also got lupus anticoagulant and multiple clots in lungs

[hunter5582 in reply to Digger031145]

I am in the USA. I was fortunate to find a very knowledgeable Integrative/Functional Medicine doctor locally. there is a list of Functional Medicine doctors that includes the UK. ifm.org/find-a-practitioner/

You may find an Integrative Oncology unit attached to some hospitals. There are some Integrative Medicine practices in the UK. ncim.org.uk/ You would have to look for something close to you.

My MPN care team is in agreement that inflammation is a core issue with MPNs. They do not, however, offer any solutions to systemic inflammation. That is the realm of my Integrative medicine doctor. She is also the one who identified that Milk thistle extract could reduce the impact of Besremi in my liver (returned LFTs to normal).

Given that you have LA in addition to ET, your situation is quite complex. Anything that causes inflammation can cause reactive thrombocytosis. The deregulated JAK-STAT pathway increases the production of inflammatory cytokines, complicating things further. Our bodies are integrated systems where there are complex processes and interactions occurring. There can be significant benefit to consulting with a doctors whose discipline looks at the body in this way. It can be particularly helpful to find an Integrative (or Functional) Medicine doctor with a strong background in oncology.

Wishing you all the best.

[william-Indo in reply to hunter5582]

I take milk thistle as well and it is very good to protect liver.

Pain in liver simptom disappear already.

Cheers

[Digger031145 in reply to william-Indo]

Is milk thistle for inflammation?

[Digger031145 in reply to hunter5582]

I’m taking celecoxib at the moment.

I’ve got to get rid of this inflammation as it caused excruciating muscle spasms in my back . Was getting spasms every 29 seconds for almost 10 weeks. Had to have Botox to stop them

[hunter5582 in reply to Digger031145]

There are a number of causes for back spasms. Hopefully, you can find someone who can help you treat the cause rather than just the symptom. While it may not be the issue, it is worth noting that back pain is a know side effect from hydroxycarbamide.

An Integrative or Functional medicine doctor may be able to help with this issue. There are electrolyte imbalances and and mineral deficiencies that can cause muscle spasms. You may also need to consult with a back specialist if the issue is directly related the the spine/nerves/back muscles.

Hope you get it sorted out.

[Digger031145 in reply to hunter5582]

I’ve been under a back specialist. Had MRI done on my spine and nothing is showing up that would cause spasms.

For years and years I’ve questioned if Hydroxycarbamide can cause muscle pain and every time I’ve asked I’m told no it is not a side effect even though I’ve shown them what I’ve found out on the internet.

I also now have field vision problems but again I’m told nothing to do with Hydroxycarbamide. Yet again it is noted in side effects.

My ESR is horrendously high but again I’m not that it is nothing to do with ET or Hydroxycarbamide.

I had a steroid injection in my knee and my ESR dropped from 83 to 47 and some of my muscle pains felt a lot better after the I he tion.

I’m on uk and we don’t have interpretive Drs or functional drs that I know of.

I feel like I’m in a losing road now. I’ve got so much wrong with me now. I also read that HU can be the cause of lupus anticoagulant???

[hunter5582 in reply to Digger031145]

Hydroxyurea can certainly cause back pain. That is well documented. Whether the HU is causing your back pain is the issue at hand,

It is correct that HU can cause drug-induced lupus erythematosus (DILE). It is not a common adverse effect, but it is serious when it occurs. Elevated levels of lupus anticoagulant can be associated with lupus erythematosus. Muscle pain is one of the known symptoms associated with lupus erythematosus.

The high ESR certainly suggests a high level of inflammation in the body. The positive response to steroids is strongly suggestive that inflammation is an issue. Note that lupus is one of the conditions that can elevate ESR. It is also notable that steroids are used to treat lupus.

None of that means that HU is the cause, but it is certainly plausible and worth investigating. Follow up with a rheumatologist is essential.

It is reasonable that you would suspect that HU may be causing significant adverse effects. The only way to find out may be to discontinue the HU and try something else. This is a decision that you will need to review with your care team. This is what I did when I had adverse effects from HU. When I stopped the HU, the adverse effects stopped. I have done much better on the interferons, Pegasys then Besremi. We do not all respond in the same way to the medications used to treat MPNs. the only way to find out is to try different options.

Regarding Integrative and Functional Medicine doctors, they are available in the UK.

Search here for Functional Medicine - ifm.org/find-a-practitioner/

Google for Integrative Medicine -

nccih.nih.gov/

ncim.org.uk/

integratedmedicine.co/

[Digger031145 in reply to hunter5582]

They said I don’t have the autoimmune Lupus as the blood tests for that was negative. So they told me I just have the lupus anticoagulant bit.

Can I have steroid injections then to combat the inflammation? I do not want oral steroids !!

I cannot take normal anti inflammatories due to being on warfarin. I’ve told my haematologist for several years about muscle pain but he was adamant nothing to do with HU. Another thing, after I had the steroid injection my platelets dropped dramatically so did my ESR ( and I’d also reduced one hu a week as per professor Harrison’s advice) my haematologist argued with me that inflammation does not increase platelets when I challenged I’m in the 3 increases I’d had in the past year. Platelets going up along with ESR but he wouldn’t have it!!

I just don’t know which way to turn now. I don’t see my replacement haematologist until end of October.

I don’t see rheumatologist until end of November. I’ve had a PETCT scan but don’t have results until I see the rheumatologist

[hunter5582 in reply to Digger031145]

It is ridiculous to deny that inflammation causes reactive thrombocytosis. That is well established. I am glad to hear you will have a new hematologist. Perhaps the new doctor will be more suitable.

I checked with two interaction checkers, MedScape and ePocrates. Neither shows an interaction between curcumin and warfarin.

reference.medscape.com/drug...

epocrates.com/online/intera... (note supplement checks require the profession version)

Warfarin comes with this note when checking Warfarin.

Warfarin monitor INR more frequently when starting, adjusting, or stopping other drugs, incl. short-term therapies, OTC drugs, herbal supplements; drug interaction mechanisms do not always predict anticoagulation effects due to high inter- and intra-patient variability

I would NOT suggest starting on any anti-inflammatory agent without checking with a knowledgeable medical professional. Note that complementary health interventions are outside the scope of many doctors. They should be reluctant to make any recommendations in this area. It would be worth paying out of pocket if necessary to consult with an Integrative or Functional medicine doc. Given how long you have to wait to see the other providers, it would be worth the investment. These docs could also provide input into what is going on for you from a holistic perspective that is often missing when consulting specialists.

Wishing you success moving forward.

[Digger031145 in reply to hunter5582]

I found this about curvumin & warfarin

Blood-thinning medications: Tumeric may make the effects of these drugs stronger, raising the risk of bleeding. Blood-thinners include warfarin (Coumadin), clopidogrel (Plavix), and aspirin, among others.

What does this mean

“reactive thrombocytosis”

Thanks for your help. Unfortunately I don’t have any more money for private as spent 20k in last few years on drs

[hunter5582 in reply to Digger031145]

The warning indicates that curcumin may potentiate the blood thinning aspects of warfarin but not that it will. As ePocrates notes, this may be variable and differ between patients. I have not found any impact taking aspirin and curcumin at the same time. My response does not predict yours. Like all of the decisions we make, we have to weigh risks and benefits. If an anti-inflammatory agent would reduce your pain/improve quality of life - is it worth the risk?

Reactive Thrombocytosis is when something increase the production of platelets. These include Inflammation, infection, injury, iron deficiency, and more. There is plenty of information on this in the literature.

my.clevelandclinic.org/heal...

emedicine.medscape.com/arti...

ncbi.nlm.nih.gov/books/NBK5....

[EPguy in reply to Digger031145]

According to this source, "Lupus anticoagulant is one (antibody that) can cause antiphospholipid syndrome (APS). APS is an autoimmune disease (A-I) "

my.clevelandclinic.org/heal...

So Lupus or not your Dx points to A-I. How many ANA tests did you get? These can be neg or positive over different times.

This source suggests you should also get more than one ESR test over time and your high ESR result by itself does not point to APS:

" The erythrocyte sedimentation rate may be high during the acute thrombotic event. However, markers of inflammation are typically normal otherwise"

ncbi.nlm.nih.gov/books/NBK4...

This same report notes APS can be "secondary to autoimmune processes, such as systemic lupus erythematosus (SLE), in 40% of cases". So odds of Lupus are raised but not required. There is a lot of detailed info on APS in this report including Laboratory Criteria with the qualifier "The criteria are quite complex".

Notably, low dose aspirin is one standard treatment for APS, same as most MPNs, but your warfarin precludes that as you say.

--

My interest here is I have a b-cell mediated A-I as is Lupus and getting a quality Dx for these can be a challenge. But you apparently do have an A-I of some sort and inflammation is all over these conditions.

--

In sum, you, like I, have A-I with the MPN that can mix up tests and symptoms.

[Digger031145 in reply to EPguy]

What is A-I?

I’ve been told I definitely do not have the autoimmune lupus but just the lupus anticoagulant. All other APS tests were nagative.

[EPguy in reply to Digger031145]

That's reassuring to be certain it's not lupus.

A-I for Autoimmune Disease. "People who have APS have at least one of the antibodies that cause it." and the reports here claim it's an A-I. This info could inform questions for your Dr but if your Dr has assured you there is no type of A-I involved that takes priority.

[Aquinas]

I very strongly recommend that you read " Good Energy" by Dr. Casey Means. It is very helpful indeed.

[william-Indo]

It use to protect your liver.In this case, yes, it may reduce inflamation