Just had a call from specialist nurse to say bmb results were in and they showed more fibrosis than the last one 6 months ago, but not full blown myleofibrosis, more likely pre mf. They’re going to send me a leaflet about it with all symptoms so I can see if I’ve got any. I’ll get an appointment to see the doctor in a couple of weeks (first face to face appointment for 3 years!) She also said it could be the Anagrelide that was causing the fibrosis and anaemia!
I’ve still got a lot of pain from the bmb where they caught the nerves, very painful getting in and out of bed, and hard to get comfortable in bed. Better when I’m moving about. I’m taking co-codamol for the pain, which, of course, cause constipation.
So it maybe a change of medication in the future, I presume the doctor will decide this when they know whether I’ve got any other symptoms of mf.
Is anyone else in this position? Any advice appreciated.
Thank you.
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lizzziep
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Sorry to hear that the pain persists. I experience the exact same problem with any opioid. they all stop me up like a cork. There are a number of options, all of which I have used. Definitely review the options with the hematologist, but you may need to consult a pain specialist if the problem persists.
The things I have tried re. opioid constipation
Movantik (naloxegol) - does help reduce the constipation (note that it is not a laxative)
Miralax/Docusate - does help reduce constipation (osmotic laxative/stool softener)
Senna - does help relieve the constipation - caution with long-term use (stimulant laxative).
Diet - fruit that contains sorbitol (e.g., plums, prunes)
A non-opioid pain relief option I have used is Lyrica (pregabalin). It can help with neuropathic pain. I stopped taking it do to a decline in concentration. Some people also use Neurontin (gabapentin) for neuropathic pain. While these meds can cause constipation, I did not experience it.
Hopefully you can review your pain treatment options ASAP. Perhaps a consult with a pain specialist is in order sooner rather than later. It sounds like you need a case specific solution to the issue from a provider with skill in treating pain.
It also sounds like it is time to review your treatment options for the ET. I do not recall what you have already tried. I would wonder whether Pegasys is an option for your situation. While the debate is still underway, some believe that the interferons offer the best chance of slowing progression. Note that there is not a clear consensus on this at this point. Pegasys is recognized as a viable choice for treating ET regardless of its impact on progression.
I do not recall whether you are already seeing a MPN Specialist. If not, this would be a good time to seek an expert consultation. Here is the list just in case. mpnforum.com/list-hem./
Please do let us know how things go and what you learn. Everyone can benefit from your experience and knowledge.
Thank you. I got some Lactulose for the constipation from the chemist which is starting to work! I eat plenty of green veg etc. I want to cut the painkillers down, hopefully the pain will start to get easier soon, it’s better than it was.
The doctor I will be seeing is one I haven’t seen before ( new since the pandemic) so I will see what they have to say, my appointment should be in the next couple of weeks. I presume they will change my medication from Anagrelide to something else. I think I will get some info about mf together from this site and print it off to take with me, and write down what I want to ask.
I will update when I have actually seen the doctor - quite a novelty after 3 years of telephone appointments!
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