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Essential Thrombocythemia & Pain Killers

Hi All. I was just wondering what pain killers others have used for Bone pain headaches etc with ET. I paid a visit to my GP which again was a doctor i have never seen before. I have been taking paracetamol for my migraine, headache, bone & joint pain which does not work as most of you will already know. The GP has given me Half Beta-Prograne tablets. When i picked them up at the chemist they took my phone number to ring me in a few days to see how i am doing with the tablets because of the side effects. When i have read the possible common side effects they can cause cold hands and feet, weakness, tiredness (fatigue), Difficulty in sleeping, Nightmares, Slow Heart Beat, and poor blood circulation which makes the toes and fingers go numb. What i see is they have given me something that actually causes all the side effects that ET can also cause plus more symptoms as if i was not having enough problems. Has anyone else been given these to take before i even start taking any as i am not to sure about taking them even though this GP has told me they will be ok.

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HI i use 8/500mg co-codamol as i have really bad back pain it is like a squirrel gnawing on my bones on my back hope you are able to get a prescription from your doctor or tell your consultant about how bad your pain he or she might prescribe you something

best wishes

ScottishTerrier

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Hi Scottishterrier. Thanks for the reply. The Hematologist does not take much notice of me complaining about the pains and headaches etc. He said he does not know what is causing it and to take it up with my GP. This i have done but as you know most GP.s are not up to speed with our illness and are not aware of the symptoms which a lot of us have as everyone is different. What makes it worse is every time i go to the doctors i get to see a different doctor which does not help. I have been onto the medical center explaining about the tablets i have been subscribed by the doctor for bone pain, joint pain, headaches etc and they have now told me they are for my headaches & migraine. I asked the doctor if he could proscribe me with a stronger medication than using paracetamol for the pains and he has given me medication for the headaches and not for all the bone & joint pain i suffer from. Looks like i will have to make another appointment and see if i can get anything for the bone & joint pain. I will have a go with the co-codamol first and see how i get on with them.

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Is there a pharmacist linked to your haematology clinic, at met ours for the first time a few weeks back, she carries a wealth of knowledge not only about MPN’s but obviously medication and was extremely helpful. It may be worth contacting your heamotologist’s secretary and asking the question, they will be able to seek further advice on your behalf. I hope you get some relief soon x

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Hi Trocken Thanks for your reply. i am going to give co-codamol a try first and see how i get on with that. There is a pharmacist linked to the hematology clinic so if the co-codamol does not help i will ask there opinion on or before my next visit if i need something else.

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These are propranalol which are betablockers. I take 40mg propranalol as a migraine prevention but unsure that they would be a good painkiller?!

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Hi Craftyviolet. Thanks for getting back to me. Yes thats what they said at the medical center when i phoned them about the medication i had been subscribed. Do you have ET and do they work for the headaches & migraine.

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For day to day pain relief I use Paramol, which paracetamol and codeine. Then co-codamol for real pain!

Stephen (age 68)

ET - HUx10/week

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Hi Stephen399b Thanks for your reply. I am going to give the co-codamol a try.

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Hello. Not familiar with that drug. Since ET causes sluggish blood flow, I do not like to read a side effect is cold hands, or fatigue. I get cold hands and fatigue from the ET - and now more fatigue from the Hydroxyurea I take. I am taking 5 50mg Tramadol a day for a variety of aches and pains. It helps me cope at best, as it masks the pain somewhat. Wish Dr would give me something stronger. I am Calr type 1 (June 2018) and Doctors can not or will not confirm or deny my aches and pains are from my mutation. With all the effort to reduce opioid prescriptions, suffers of chronic pain will continue to suffer. Best of luck in your journey.

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Has anyone heard about bone broth

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I take an Advil only when headache is really bad. But I have always had headaches. Runs in family

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Hi Petsch. I have given co-codamol a try now and that is not even working for me. Guess i will just have to start experimenting with the medication everyone else thinks helps them until i find the one that suits me.

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