Ruxolitinib and NSAIDs

[sbs_patient]

Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.

[hunter5582]

I have not heard of a blanket contraindication for Jakafi and NSAIDs. In fact, most people are taking low-dose aspirin with Jakafi. I believe there is a contraindication of the Jakafi induces thrombocytopenia. That would make sense since one would be at increased risk for hemorrhage.

[Otterfield]

I was advised not to take NSAIDS with Ruxolitinib. I found Paracetamol fine for most pain but I have had stronger medication prescribed by my GP.

[sbs_patient in reply to Otterfield]

I'm curious about what drug was prescribed for your pain. Acetaminophen/paracetamol hasn't helped much with the pain of an inflamed sacroiliac joint.

[TLJ-1 in reply to sbs_patient]

Well, since we can't use NSAIDS due to the statistical possibility of induced bleeding, we are generally left with acetaminophen for pain. Since that may be insufficient for the pain, the next step is a big one: opioids. Not all opioids are equally addictive, so you could try using one for a week or so. Also problematic for long-term use, but useful at lowering pain for a while, are corticosteroids such as prednisone. There are other drugs that target nerves, e.g., gabapentin and nortriptyline, that are used off-label, since some people seem to experience less pain while taking them even though pain receptors are not their designed targets. (I did not find them to work for me, however.) Some people swear by cannabinoids for reduced pain, but I personally do not know much about them, and I have found no scientifically sound studies to support their use. Depending on your source of pain (and I know nothing about an inflamed sacroiliac joint), it is sometimes possible that pain can be reduced by actually treating the source of the problem; some rheumatoid arthritis drugs do lessen pain.

[Otterfield in reply to sbs_patient]

tramadol

[sbs_patient in reply to Otterfield]

Thanks for your suggestion. Fortunately, some visits to a chiropractor have solved the problem for now.

[DJK12]

I think this is one for your haematologist or oncology pharmacist. I certainly understood they should be avoided if on ruxolitinib but was already doing so as they are contraindicated for the blood thinner apixaban which I was already on. If you are on low dose aspirin presumably they will have assessed your personal risk.

[sbs_patient in reply to DJK12]

I am on low dose aspirin but was told to stay away from other NSAIDs.

[Meatloaf9]

Best to ask your hematologist to be sure. best to you always.

[lucieboo]

It is a tricky one. I can't take NSAIDS anyway as they irritate my stomach, even with the protective med for this. I am also told I MUST NOT take Atarax which I have used for years to help with PV itching and sleep as there is a serious reaction with Jakavi. So, I am limited to Paracetamol for pain relief (and alcohol to help me sleep! - not recommended!). Jakavi also caused significant weight increase and dieting does not work, I believe this is a common side-effect (5% weight gain they say - I have exactly this and it stays stable whatever I eat). I must say, despite these disadvantages, Jakavi has proved very beneficial, especially as I don't itch at present.

All meds have side-effects and some are serious. Because of heart fibrillation I am on Cordarone (Amiadarone) which works well and is absolutely necessary, but has destroyed my thyroid, given me a dry cough and headaches. But, such is life! I think with MPNs everything is a constant a balancing act. Take the advice of your haematologist/oncologist and report side-effects.

The very best of luck to you. Keep positive!

[sbs_patient in reply to lucieboo]

Thanks for your long reply to my query. Warnings on taking NSAIDs with ruxolutinib are all over the Internet, and I was specifically told not to do so (except for low-dose aspirin) by my oncology pharmacist. My current problem is that acetaminophen is of limited help in dealing with the pain of an inflamed sacroiliac joint. Aches and pains are unfortunately an unavoidable part of getting old (I'm now 78). I am seeing a chiropractor for this and will go on to an orthopedist if this doesn't help me, but it's all happening slowly because I'm in the middle of cataract surgery: left eye done successfully, right eye to follow next week.

Otherwise, my first month on Jakafi has gone pretty well. My blood pressure seems to be up a bit, but this is also on the list of expected effects. I haven't see any weight gain so far (rather the opposite, which will become worrying if it continues). A 5% gain would be tolerable.

I will definitely keep my hematologists informed. There are two of them: a local one, and a MPN specialist located about 200 miles from here. As you say, life with MPNs is a complicated balancing act. I was diagnosed with PV back in 2015. Hydrea worked fine until recently but this year my MPN specialist said that it wasn't effectively controlling my disease and advised me to try ruxolitinib.

Thanks again for your support!

[DJK12 in reply to sbs_patient]

I'm 4 years into rux treatment and haven’t had the weight gain side effect In fact it dropped further but has now stabilised. Hope your second catatact op goes smoothly. I had to have both done three years ago and although I still have to use reading glasses my distance vision is perfect. Your joint problem sounds so a painful. In the UK I believe advanced level practioner physiotherapists (physical therapists) are often a great help with this and some are qualified to give the injections mentioned in another post.

[sbs_patient in reply to DJK12]

Thanks for your comment. Both cataract surgeries went smoothly. I opted for near vision and am still waiting to get a new eyeglass prescription so I can have distance vision. Ruxolitinib seems to be working fine for me; no weight gain as yet, and my blood count numbers as of today are in or near normal range.

[DJK12 in reply to sbs_patient]

Good news about the cataracts and that the ruxolitinib has stabilised your blood count.

[lucieboo]

Hello

I found this on Wikipedia. Perhaps you already know this? O have no idea if either is possible for you, but if so they would be better options than pain relief or chiro/physio, probably the non-surgical because like me you may well be on blood thinners.

Non-surgical

For more severe forms of sacroiliitis, sacroiliac joint injections might be recommended to help combat symptoms. If chosen, a physician will inject a numbing agent, usually lidocaine, and a steroid containing powerful anti-inflammatory medication into the joint using fluoroscopic guidance.[8] These steroid injections can be delivered up to three or four times a year and should be accompanied with physical therapy to help rehabilitate the affected joint.[citation needed]

Surgical

Surgery is often the last resort when dealing with sacroiliitis and is rarely required. However, it may be a viable option for patients who are suffering from severe pain that is unresponsive to nonsurgical treatments and is significantly impacting their quality of life. In these cases, a minimally invasive procedure known as Sacroiliac Joint Fusion can effectively stabilize the joint and increase its load-bearing capacity by fusing it together.[9]

May be worth looking into. Good luck and I hope you get some relief, chronic pain is so life destroying. It will be nice to get your cataracts done, the results are wonderful. I had mine done a few years ago and my husband goes for the second eye on Monday.