pain relief

[johnnyjumpups]

My hematologist's office told me I could not take ibuprofen. Only tylenol. I am curious if you all have been told that, and if so, what do you use for pain relief? Tylenol doesn't really help that much, and it is hard on the liver. Some have suggested to me that CBD rub works. Has anyone tried that?

[lakeview65]

I have heard many people on this forum say they can only takeTylenol for pain. Before I was diagnosed I used Aleve when I had a few pains from playing tennis. I asked my MPN Dr. at a visit if Tylenol was the only drug I could take for pain. He asked me who told me that and told me that I could occasionally take Aleve. I take it very seldom but at least I know if I need it, I can take it.

[johnnyjumpups in reply to lakeview65]

Thank you Lakeview65.

[hunter5582]

Ibuprofen potentiates the effects of aspirin, increasing risk of bleeding, GI perforation and other possible adverse effects. Acetaminophen does not carry this risk. Pain management options would vary based on the type of pain. Neuropathic pain may respond to medications like gabapentin or pregabalin. Pain from inflammation may respond to alternative treatments such as curcumin, which had worked better for me than NSAIDs for osteoarthritis relief. Some have reported success with CBD, oral and topical. There are also topical agents like diclofenac that may help with some kinds of pain.

It is very important to consult with a medical professional about the potential for drug/supplement interactions with aspirin or any other medication we take. It can help to also check with other resources such as these.

reference.medscape.com/drug...

drugs.com/drug_interactions...

epocrates.com/online/intera...

[johnnyjumpups in reply to hunter5582]

Thank you Hunter5582. Did you use a topical curcumin? (I don't even know if that exists). The pain is in my big toe joint where a bunion and arthritis live. I would rather use topical if I can find something that works. I have used the diclofenac (Vontaren), but it is absorbed and acts like ibuprofen in the body. And I don't know if CBD really works. Thanks for all your help.

[SoledadBarcelona in reply to johnnyjumpups]

This mean that your immune system is overexcited. Changing the lifestyle is very important. This is based of proper exercise, a strict antiinflamatory diet, good sleeping, taking care of your microbiote with an expert in it, stopping stress, controling the progression o

[johnnyjumpups in reply to SoledadBarcelona]

Thank you SoledadBarcelona

[Grateful333 in reply to johnnyjumpups]

This is anecdotal, but more and more people are reporting that frankincense essential oil (drops in a carrier oil) have helped their pain. Worth a try I say, especially in a topical application like this.

[johnnyjumpups in reply to Grateful333]

Thank you Grateful333. This is not something I was aware of!

[Grateful333 in reply to johnnyjumpups]

If you try it let us know! I use it in my facial oil, (organic hexane free castor oil) so I know it won't hurt your skin.

[johnnyjumpups in reply to Grateful333]

Thank you, I will!

[Adlon57 in reply to hunter5582]

Been diagnosed ibuprofen for relief of pain on the neck/head, just the GP that did so, not exactly my favourite medical 'expert, very poor record on my medical history🙄 Could be good chance of reaction?

[william-Indo in reply to hunter5582]

You explained it very well.👍

[johnnyjumpups in reply to hunter5582]

Thank you so much, Hunter. You always share such good information. Much appreciated.

[hunter5582]

I have used diclofenac topical with aspirin at my doctor's direction. While there is some degree of risk, with low dose aspirin it is often manageable. Please check with your care team about that.

The bottom line seems to be that almost any anti-inflammatory agent is to some degree blood thinning. This is true for oral curcumin (turmeric) which I have been taking for many years with my care team's support. I have not found any potentiation for be an issue. The curcumin makes the difference between being functional or not in managing osteoarthritis. There is not question that the benefits outweigh the risks.

We always have to weigh risks and benefits with every treatment decision we make. There are no choices that are without risks. It is important to have conversations with our care team about levels of risk rather than "can I take something. " You can take anything you wish if you feel the benefits outweigh the risks. It is your body - your choice. Having said that, I would seek expert input on treatment decisions. I include an Integrative Medicine doctor on my care team for that reason. Many Western-trained doctors are not familiar with complementary health interventions and are understandably reluctant to recommend something like CBD or curcumin. This is outside of their scope of practice.

Wishing you success moving forward.

[johnnyjumpups in reply to hunter5582]

Thank you again, Hunter, for so much good information.

[LIGEBA in reply to hunter5582]

Hi hunter5582. Do you also take low-dose aspirin in addition to your curcumin (turmeric)? If so, what are the doses of both if you don't mind sharing. Thanks.

[hunter5582 in reply to LIGEBA]

I take 1 81mg aspirin 1x/day and 550mg curcumin 2x/day. Note that the curcumin is the CurcuWIN formulation. They are not all the same.

[LIGEBA in reply to hunter5582]

Thanks hunter5582.

[kamiilos]

Hi, yes I was told the same. Cannot remember what was the reason but the recommended Panadol instead.

[TLJ-1]

The anti-inflammatories, including aspirin, can cause GI bleeding. Some are worse than others with those showing a preference towards COX-2 inhibition being much less likely to do so. Large-scale analyses of several NSAIDS showed celecoxib to be the least likely to have a problem. They are very slightly more risky than low-dose aspirin alone. Among several references I have, here is one: Arthritis & Rheumatism, 62: 1592-1601. doi.org/10.1002/art.27412]. Although the reference is a little old, it covers many NSAIDS and more recent articles are consistent. I did find that in Korea, it appears patients do get NSAID prescriptions even though they have anticoagulant therapy. Studies also show that taking proton pump inhibitors (e.g., omeprazole) reduces the bleed risk. So, some people actually do get NSAID prescriptions. I would judge that in your case, the very small amount entering your bloodstream from use of a topical such as diclofenac is pretty minimal and your degree of pain tolerance should dictate your decision. If pain is very infrequent but substantial when it does appear, then you could always consider occasional use of tramadol.

[johnnyjumpups in reply to TLJ-1]

Thank you TLJ-1. This helps.

[Ovidess]

I was told not to use ibuprofen anymore because of my GERD history--fear of worsening esophageal condition, I think.

[johnnyjumpups in reply to Ovidess]

Yes, that makes sense. Thank you for your reply.

[mbr8076]

Thank you for your query and for the informative answers. I was told last week by my chiropractor to take 3 days of 600 mg Ibuprofen am and pm and I had a very upset stomach even though I took it with food. My husband has a turmeric powder blend he started taking recently for gout. Is that even safe for me with ET jak2+?

[johnnyjumpups in reply to mbr8076]

I have no idea, that's why I asked my question here. I think your answer is going to be "check with your doctor." Sorry 😞

[SoledadBarcelona in reply to mbr8076]

For example about Ibuprofen. Too much effects. ttps://canaherb.com/blogs/news/the...

[EPguy]

Are your kidney blood tests showing risk? My neighbor at my work building ended up on dialysis from following Dr's order on ibuprofen. I recall it was a fairly high dose for an extended time.

[johnnyjumpups in reply to EPguy]

No, not that I am aware of. I think the hematologist's office was concerned about blood thinning.

[EPguy in reply to johnnyjumpups]

Good no worries there. There is another thread today on blood thinning concerns. If it's a particular concern be sure your Dr knows about any supplements you're on, for two common examples, fish oil (omega 3) and curcumin can affect coagulation/thinning. I'm affected by this issue and discussed with my Hem.

[johnnyjumpups in reply to EPguy]

Thank you EPguy. Yes, Dr has a list of supplements I am taking, one of which is fish oil. Other is turmeric.

[SoledadBarcelona in reply to johnnyjumpups]

Turmeric acts egainst Interferons.

[ETinNYC]

My MPN specialist told me it's not a problem for me to take Aleve or Ibuprofen. But I only take them/need them occasionally. Best to ask your doctor why s/he advised against it.

[SoledadBarcelona in reply to ETinNYC]

canaherb.com/blogs/news/the...

[TLJ-1]

Ibuprofen and naproxen (Aleve) are non-selective COX inhibitors and, as a consequence of their action against COX-1, they are somewhat more likely to cause problems of GI bleeding. While there are certainly big variations among hematologists with respect to knowledge of drugs and thoughtfulness regarding a patient’s individual problems, I would respect their opinion more than that of most other doctors, especially chiropractors, when suggesting drugs to be used for us MPN patients.

[johnnyjumpups in reply to TLJ-1]

TLJ-1 Thank you. I agree with you on this. Hematologists are the experts on blood, and I will absolutely take their advice and opinion over others.

[SoledadBarcelona in reply to TLJ-1]

No for us. ttps://ncbi.nlm.nih.gov/books/NBK5...

[TLJ-1 in reply to SoledadBarcelona]

Thank for the link to that recent review, which I had not previously seen.

[SoledadBarcelona in reply to TLJ-1]

Agree with you: too much hematologists dont know the effects of the some drugs over our disease. An example, check about cytochromes P450 (P450s or CYPs) that they are a superfamily of enzymes. They, unfortunately, dont know anything. We have to take action. Thank for sharing