Amatryptiline use with myelofibrosis advice

[Didgeridoo2]

Seeking advice please. Have had 2 recent admissions to hospital with high potassium, which resulted in me having gallstones. This follows 4 admissions in 2020, when diagnosed with myelofibrosis of this &sepsis.1st admission was an embolism, & was left with heart failure,&clot on lung, gallstones & sepsis.Would normally remove gallbladder, but due to health changes, the anaesthetist said no, they won,t operate. These admissions will possibly be recurrent now. 6 days home from hospital yesterday, attended heart failure clinic, & received a phone call that potassium levels very high (which is how my illness began.), heart failure nurse will visit me at home on 4th Jan. to check me over.......Telephone consultation with gp this morning, as I,ve now developed excruciating pain in feet &fingertips. When prescription delivered its for Amytriptiline. On reading guidelines I was concerned with following advice ,(neuropathy)Do not take if you have heart failure.......which I have.

Do not take if on diuretics........mine were increased yesterday .

Do not take if potassium high.....mine is again, hence home visit by heart failure nurse.

Anxious about this, as I,m recovering & been knocked for six, I phoned doctor to query, & was told it, s safe to take, & if I don ,t want to take it don,t take it. I told him I will, because pain is so awful, & cocodeine wasn,t helping. Conversation with gp was 15 mins. before closure for Christmas holidays. I,m really upset by his attitude, as I ve never been an awkward patient, & d ont like to be confrontational especially with a gp. Think my ego is bruised haha! I,m desperate to try these for pain, but contacting this group for any advice. Thank very much if you,re still awake after reading All this.x

[hunter5582]

This is a complex situation that needs input from a MPN Specialist. Responding to your needs is well beyond the scope of practice for a GP. Your situation is also beyond the scope of most regular hematologists. You need to be consulting with a MPN Specialist.

There are a few facts to consider. One is that ET can cause pseudohyperkalemia. This is an artifact on testing where your Potassium levels appear high on labs, but are actually not high. You need a proper assessment of this issues vis-a-vis the fact that you have ET. This is not to say that you do not have hyperkalemia. It does appear that your are symptomatic for this condition.

Amitriptyline is a tricyclic antidepressant that has an indication for neuropathic pain. Many tolerate it well, but not all. There are a significant number of cautions for this medication, but that is not the same as a contraindication. A caution means that you need to be careful if you decide to use the medication. It is worth considering other options when there are multiple cautions.

There are other options for neuropathic pain, including pregabalin and gabapentin. Along with amitriptyline, these meds are used to treat other forms of chronic pain as well. Note that there are even more options for chronic pain management. This is the province of pain specialists.

I am sorry to hear that you received such poor response from the GP about your valid concerns. Sometimes this happens when doctors do not know what else to do to help a patient. Suggest that you may need to seek the help you need elsewhere. In your situation, I would consider consultation with a pain specialist working collaboratively with a MPN specialist and the other members of your care team. I would also suggest requesting a review of your options for surgery for the gallstones. Just because one anesthesiologist is unwilling to consider the surgery, that does not mean that all will be. It is your prerogative to seek other opinions. It is also worth noting that you have the capacity for informed consent. Your risk level for undergoing general anesthesia may well be higher. Ultimately, you are the one who needs to determine whether the benefits justify the risks.

Living in chronic pain that could be resolved is not an acceptable option. Suggest that you will need to broaden your search for answers, including getting other opinions from the specialists with the expertise you need. It is worth noting that assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates.

Wishing you all the best moving forward.

[Didgeridoo2 in reply to hunter5582]

Thank you so much Hunter for your response, as hoped you would. Just to say, I have myelofibrosis.

[hunter5582 in reply to Didgeridoo2]

You are most welcome. I think the answer went out before I was finished, Check the full answer.

[Wyebird]

oh dear what a conundrum.

You’ve a lot to contend with.

I think sometimes ‘it’s the devil you know and the devil you don’t’

It could be that your body has no choice.

What about talking to your local pharmacist.? Firstly I’d try to consult your heamotologist.

[Didgeridoo2 in reply to Wyebird]

,(

[Wyebird]

having read hunter’s post I think he has said it all. He’s given you a wealth of solid information and advice.