MPN and amitriptyline

[MaggieSylvie]

Should a GP prescribe amitriptyline to a patient who is already suffering from fatigue due to MDS/MPN? I have cut down to taking it every other day (at 6.0 pm) but I'm still a zombie most of the time. I may be elderly but I still have things to do.

[hunter5582]

I do not know of any issues with amitriptyline and MPNs per se, but there are a significant number of cautions regarding medical conditions indicated for it (including older age). online.epocrates.com/drugs/...

The larger question is whether GPs should prescribe a tricyclic antidepressant to anyone with a medically-complex case. As I recall this is being used for neuropathic pain, for which there is an indication. This matter would be better handled by a team of a neurologist and your MPN Specialist working together.

As you already know, drowsiness is one of the common adverse effects of amitriptyline. There is a different class of medications also used to treat neuropathic pain (Lyrica/Neurontin) that you might want to review with a qualified doctor. Do note that these medications can also have somnolence as an adverse effect. You may or may not tolerate one of these better.

online.epocrates.com/drugs/...

Suggest you review your options, looking at the risk/benefit profile of your choices then discuss it with a physician with expertise in treating nerve pain in medically complex cases.

Hope that helps.

[MaggieSylvie in reply to hunter5582]

Thanks Hunter, for your knowledgeable reply, as always. My neuropathy was never described as giving pain (feeling like wearing socks) but GP insisted I take it because it would help me sleep, help with the pain and help with my low mood. It doesn't help with anything and I don't have "low mood" - only when my partner starts playing "let's get Maggie". I told her I wasn't depressed, and the dose is only 10mg. I'm clearly sensitive to things that send me to sleep or keep me awake (like coffee).

The neuropathy predates my MDS/MPN diagnosis by about five years but my haematologist says it is not a symptom. I'm having two lots of blood tests next month, one for diabetes, which I expect to be negative. In the meantime, I have stopped the amitriptyline every other day and am treating the neuropathy with vibration. It can't do any harm (I hope).

Medically I feel as I'm being brushed under the carpet. The arguments still rage about whether I can have another DEXA scan due to the changes that have taken place since the last one. I'm in less pain now, due to chiropractic and alendronic acid, and but my GP said she couldn't understand why I was in such pain (from four compression fractures) I know they don't always cause pain, but really .....! The GP I would like to change to is retiring.

[hunter5582 in reply to MaggieSylvie]

I hope you do find a good GP to switch to; however, what you are describing is outside the scope of most GPs. You have a complex case with MPN/MDS overlap and other issues, some of which are related and some of which are likely not. Your care needs to be managed my a MPN/MDS Specialist, not a regular hematologist. The types of symptoms you report (bone pain, sleep) are quite common secondary symptoms. You need docs with the requisite expertise who already understand this. I hope that if you have not already consulted with an appropriate specialist you will do so ASAP. Ideally, if you can be seen at one of the larger centers for MPNs or MDSs there would also be a neurology department. that would facilitate collaboration so you receive integrated care.

You are certainly well justified in using your own judgement about discontinuing the amitriptyline. It is your decision, not your doctor's. If the complementary health approaches do not work, then there are certainly other options. The same thing is true for the sleep issues should that be an ongoing problem.

Hope you find relief soon.

[MaggieSylvie in reply to hunter5582]

Thanks, Hunter. I just feel I don't know where to start. My MDS/MPN is low risk, so I don't feel justified in requesting a second opinion, and if I go to a centre for excellence, that would be Addenbrookes, where parking is so poor that I would find it hard to access the building - wherever it is on that huge site. You say my condition is complex but I also have osteoarthritis and compression fractures, which I don't believe are related to the bloods. it's not as if I'm a youngster!

[hunter5582 in reply to MaggieSylvie]

Actually some of it is related. Deregulation of the JAK-STAT pathway is a core function of what drives all MPNs. This includes people who are triple-negative. There are more consequences to the JAK-STAT deregulation, including systemic inflammation caused by the increase in inflammatory cytokines. While this might not "cause" some of the problems encountered, it most certainly does exacerbate them. You need a care team that understands this and other aspects of MPN/MDS overlap.

You have already made a compelling case for seeking expert second opinion. the justification is that you are not currently receiving adequate care and relief from symptoms. I do not know anything abut Addenbrookes nor whether they have a Center for MPNs/MPDs. That is what you will need to find if you want to find an expert consultant to guide your care. I am sure you have seen this before, but here is a list of docs with the expertise you need. mpnforum.com/list-hem./ .

Suggest doing whatever it takes to access the care you need and deserve. Note: quality integrated care should be the norm for all cases, especially complex ones. It is often up to us to make this happen.

Hope you find the care you deserve and the relief you need.

[MaggieSylvie in reply to hunter5582]

Thanks again, Hunter. Addenbrookes isn't on the list but I'm sure it is the nearest hospital. London would probably require a train journey and then probably a taxi. I will continue looking into this. May I quote you on anything you say?

[hunter5582 in reply to MaggieSylvie]

I have about a 2-hour drive to get to see the MPN Specialist at Johns Hopkins. My MPN Specialist consults with me and my local (wonderful) hematologist who provides my ongoing care. This arrangement works great.

I also see the NF Specialist (neurologist) at Hopkins. This is also where I had the brain tumor removed. Also had the tumor on my mandible removed there. Integrated car is absolutely vital for people with rare disorders.

I usually just spend the night to void the long drive twice in one day. It is worth the expense to reduce the wear and tear.

I hope you get it all sorted out ASAP.

[MaggieSylvie in reply to hunter5582]

You clearly have much greater problems than I have. I'm still Googling!

[hunter5582 in reply to MaggieSylvie]

Not so sure about greater - just different. I also have Neurofibromatosis Type 1, which is what lead to the brain tumor. NF1 is also a non-driver mutation that impacts MPNs. It is a bit complicated and not well understood. More reason to have an integrated care team.

[hunter5582 in reply to MaggieSylvie]

Oh - and you absolutely may quote me on anything you like.

[MaggieSylvie in reply to hunter5582]

Thank you. I will have to have answers ready as to how you acquired your knowledge!

[MaggieSylvie in reply to hunter5582]

Integrated care! That's what we should all have.

[Joetcalr in reply to MaggieSylvie]

I know that a low dose of amytrip is for nerve pain, you could try cutting tablets in half. Best regards Jo

[MaggieSylvie in reply to Joetcalr]

I could do that but the dose is already at the lowest. At least by taking it every other day I get one day of being a bit normal. After all, I need to drive myself and partner to appointments and we went out over the weekend so I wasn't at home to take a pill of any kind.

[Yorkstyke]

I'm on 50mg Amitriptyline for Migraines caused by MPN.My neurologist has suggested I switch to Gabapentine if I have excessive fatigue. I am generally tired, but don't want to switch yet as the Amitriptyline works.

[MaggieSylvie]

Who knows - the gabapentine might work just as well and make you less tired. I don't know, as I haven't been offered it and I no longer suffer from migraines (caused by fibromyalgia).

[nivana]

Having had a reaction to co-codamol for pain, I was then prescribed amitriptyline as pain was reducing my sleep. Last week I noticed my heart beat was loud, fast and sometimes uneven. I stopped taking the tablets and after three days my heart beat was back to normal. I am not at all keen to try anything else. Think I’ll look at natural things (although a lot of those are not compatible with our illnesses and chemo). Amitriptyline also made me feel depressed).

[hunter5582 in reply to nivana]

FYI _ I have started using Ubrelvy, a CGRP Inhibitor, for the migraines I have experienced. It works really well. My niece, who has truly debilitating migraines is using a long-acting injectable form of a CGRP-inhibitor after having tried everything else on the market. She says it has transformed her life. All benefit without significant side effects. It could be another option if needed.

[nivana in reply to hunter5582]

Thank you

[MaggieSylvie]

I wish I'd known about that when I was a sufferer. It sounds great.