What pain killers can I take when on HU?

[Michali45]

I am experiencing terrible pain in my left hip/ thigh and leg and slept for only one hour last night. I had an X-ray and blood tests on Wednesday and await the X-ray results. Nothing was broken luckily. But meanwhile I am taking paracetamol every four hours which really doesn’t do much. As I’m on Hydroxycarbamide and low dose aspirin, I know I can’t take ibuprofen and I’m waiting to hear from my Hematology nurse as to whether I can take codeine, which I really don’t like. But this pain is too bad to not take something other than paracetamol! Are there any other ideas please?

[Mazcd Partner MPNVoice]

Hi Michali45, so sorry to hear you are having such bad pain, really horrible for you. You could ask the nurse if there is anything else you can take if you don't want to take codeine, or you can also ask at your local pharmacy for advice on pain relief. I hope it gets better soon. Best wishes, Maz

[Michali45 in reply to Mazcd]

Thanks Mazcd! Yes, I hope to hear from my nurse later. But I just had to take codeine and paracetamol just now as I couldn’t bear the pain! Now back in bed while they kick in.

[Otterfield]

To be honest, I didn't find codeine very helpful for severe pain. Tramadol worked for me, as did Oxycodone if you don't mind being spaced out. Use with great care as they are addictive.

[Michali45 in reply to Otterfield]

Thanks and I agree codeine isn’t perfect but I don’t want to be spaced out! I am just hoping this will just go away! Wishful thinking! I had an unexpected visit to the hospital today as they saw my haemocrit was a bit high. It’s OK though and I managed to hobble home. I have had contact with my GP, St. Thomas’s and Guys hospitals this week and everyone has been wonderful. I am so lucky (apart from having ET and now, supposedly, arthritis!)

[hunter5582]

Here is a link to drug interactions. online.epocrates.com/drugs/...

This is a question that needs to be reviewed with your care team about drug interactions. However, your hematology care team may not know what medications would be the most effective for this type of pain as it is outside of their scope of practice. The answer may vary based on what the cause of the pain is. Consultation with an orthopedist would seem to be in order or possibly a rheumatologist may be in order. Possible consultation with a Pain Specialist is the pain does not resolve soon.

Do please be cautious with pain meds as some are quite addictive. Hope you find relief soon.

[Michali45 in reply to hunter5582]

Thank you, Hunter! As usual your knowledge is very helpful.

[DonaldOrr]

I had a similar problem, turned out to be sciatica. Doctor gave me Amitriptyline which helped. Still lingering but regular massage helps greatly. Hope you get a resolution soon.

[Michali45 in reply to DonaldOrr]

I have been thinking it might be that. I’m going to ask my GP about Amitriptyline (must check Hunters list though!)

[ALlady in reply to Michali45]

That was my problem as well. I have managed it with heat, massage therapy, yoga therapy and exercises and my life saving little TENS unit. Good luck in finding the cause and answer.

[Orangeboykitty]

If cannabis oil is available to you, you might want to try it. It probably has to be a combination of THC and CBD in order to have any effect. I never found CBD alone to be helpful. The oils are not addictive, not harmful, you can't overdose on them and they tend to really help for pain. You'll probably need a prescription but I think it's worth a try.

[Michali45 in reply to Orangeboykitty]

I cant really get hold of that but I bet it would work! Something has to!

[Orangeboykitty in reply to Michali45]

It can't hurt to ask about getting a prescription. Lots of countries now are allowing medical cannabis. They'll probably want to give you CBD oil, but it doesn't work. It has to be a mixture, heavy on the THC. Good luck!

[Smudger0122]

Hi Michali,Is ibuprofen a NO NO then, i wasn't aware.

I to am on hydroxycarbamide, was aspirin but now clopidogrel.

Hope you feel better soon.

[Michali45 in reply to Smudger0122]

No, definitely been told no ibuprofen!

[Anag]

You probably need an MRI. Depending on what you actually have, Voltaren or parkemed or Xefo if this has to do with inflamed ligaments and joints. These are the med names in Germany/Austria. You can look these up and see what they’re called where you are. Here you must have a prescription. They should be taken with stomach protection. These have side effects. Gastritis, etc. Liver problems, so you need liver support! All our livers are burdened by our meds.

CBD and Turmeric/Curcumin are good natural alternatives without side effects. Turmeric thins blood, careful!

Get better soon.

[Michali45 in reply to Anag]

An MRI might be the next stage. I will look up the meds you mention. Thanks!

[Gaithersburg]

Hi, I have ET too and had terrible hip pains and shoulder pains. I was diagnosed with Fibromyalgia about 8 years ago (which I do not believe I have as I just think it's a side effect of ET) but was prescribed Amitriptyline which is amazing. Took the pain away and I could sleep - total life changer. It took 2 weeks fir the tablets to work but amazing difference. Good luck and hope you get some relief. Lisa

[Michali45 in reply to Gaithersburg]

I’d be willing to wait two weeks for anything to work at this point of time!

[Gaithersburg in reply to Michali45]

Ask your GP to prescribe it so you can give it a try and explain why as we get intense bone pain with our MPN which can be relieved plus a lot of us use this medication for this purpose.

[azaelea]

Hi Michali, I have just experienced similar symptoms to yours . My right hip suddenly developed an excruciating pain all round the joint and I was unable to walk for over a week. Very unfortunately it began a couple of days before we went on holiday which,although we still went ,restricted both my husband and I completely. I’ve been back home 10 days now and after a few days back the crippling pain began to subside and although I still feel it, I can walk again, although not very far. I too am wondering if it could be related to the ET as mentioned by Lisa above. I do hope you get some help and relief soon. I really do know how you’re feeling! Regards Fran

[Michali45 in reply to azaelea]

Oh that was very bad timing for you! I am never sure whether these problems are due to ET or just part of life's challenges. Mine is not so much on the hip anymore but affects the leg terribly at the moment. It seems to migrate from one area to the next!

[azaelea in reply to Michali45]

I’m never sure either. I’m ET JAK2 on Hydroxy and Clopidogerel ..Diagnosed four years ago. I forgot to mention Paracetamol did nothing to help with the hip pain either. Was going to try and see GP but with it wearing off a bit, haven’t bothered with the hassle. Maybe once yours has gone a bit from your leg it might decide to disappear.Really hope so. Fran

[SDJD in reply to Michali45]

I get the same and wondering if it is bone pain related to our MPNs. Suzy

[Cja1956]

Hi, Michali45, I really feel for you. The same thing happened to me last year, but on my right side. I was unable to walk for nine days. I had an x ray and a cat scan but they couldn’t find the problem. I finally went to my hematologist thinking it was bone pain. She prescribed an ultrasound of my leg to look for a blood clot and an MRI. The MRI showed an inverted herniated disc. During this time period, I tried tramadol, OxyContin, and ibuprofen. Nothing helped. Then one night my daughter brought me CBD gummies, and finally, I got some relief. So, I think you might want to look into that.

I wish you all the best.

[Michali45 in reply to Cja1956]

I certainly will. I’m glad you found the cause of the pain.