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We are sending along the emails tonight and have posted on our Facebook group and it’ll be up on our front page just as soon as Randy can post it.
The link to see the details of the AGM and conference is here, and you can sign up right there. Hope to see you there! ukmastoagm2019.eventbrite.co.uk
- This reply was modified 5 months, 2 weeks ago by mastouk.
Hi Heather (and Abi),
I’ve posted the latest update on the ketotifen situation on the website. The tablets can now be procured through four UK companies that are allowed to import medications that aren’t licensed in the UK. I’ve spoked with all four and the products are all made in the EU. It will be important for you and your pharmacist to ensure that you’re ok with whatever inactive ingredients (known as excipients) there are in the product being imported for you! Feel free to reach out if you are having trouble getting your pharmacist to reach out to the importing folks. They are listed here on our ketotifen page http://www.ukmasto.org/ketotifen.
Glad you’re here, Dave! We will look forward to having more parents here chatting going forward. As you know, things are quite active over on Facebook, but we like having this more private space available as well!
I’m glad to hear your consultant has connected you with Dr Radia. It would be sensible to check back in with Dr Radia once you have some more information. It sounds like you have an enterprising cardiologist, which is great. I know that there are some patients who have a mast-cell related heart condition called Kounis Syndrome, but it isn’t something I know enough about to know whether there is some overlap with your situation. It might be something to bring up with the cardiologist is case it turns out to be useful.
Regarding ranitidine, the situation is still not entirely clear, but it is certainly something on our “radar screen.” Ranitidine is often serving more than one function for mastocytosis patients. It can be helping with the overproduction of stomach acid, which can happen because of excess histamine being released from the mast cells, but it can also be helping prevent/manage a wider set of symptoms that are mediated via those H2 receptors that the drug blocks. For that reason, it may be desirable to look for another H2 blocker to replace the ranitidine if you and your doctor decide to switch (or the availability requires a switch). The other H2 blockers on the market are famotidine, cimetidine, and nizatidine. Some of them have issues with possible bad interactions with other medications, so the choice should be made with someone who is looking at the whole picture of your medications and medical concerns. The other category of drugs that some people take to manage the hyperacidity problem is proton-pump inhibitors (PPIs) such as omeprazole, lansoprazole, etc. Those can be very helpful with the acidity problem but don’t have the other H2 blocking effects that some need and were getting from the ranitidine. (And for some of us it isn’t just one category or the other. I’ve been taking both ranitidine and lansoprazole for years because the acid is so overwhelming). Hope that helps!
Hi to all!
Randy is working on the venue details, but you all are some of the first to know. We will be holding our AGM, with at least one talk and perhaps two, on Saturday, January 4th in the Manchester area. Our speaker will be Frank Siebenhaar, one of the leading researchers on mast cells in the world. He is particularly interesting on mast cell medications and how they work. He’s been involved in designing a number of trials for everything from antihistamines to tyrosine kinase inhibitors, and has developed a tool for assessing quality of life in mastocytosis– something that’s critical for assessing whether new medicines work. We also expect to see Dr Radia and perhaps also her mastocytosis fellow. It is our “off” year, but we also like to make it worth your while to travel to the AGM!
Details to follow, but put us on the calendar.
Glad you’re marking the day! I’ve posted a number of “infographics” in our Facebook group that people can share if they are on that platform. I’ve got my ribbon as well. We will be selling our new purple silicone wrist bands starting this week.
Dr Radia will be marking the day at her Monday clinic at Guy’s Hospital tomorrow, with brochures, wrist bands and ribbons available to those who visit.
We are open to suggestions on how to mark the day in future. Andrew Marr is a coincidence, as far as I know, but reaching out to local media to stir up some interest would be a good target. Ideally, we’ll help others out there who are struggling to find support and perhaps help them be diagnosed and treated.
I’m glad you’ve found us! I’m very sorry to hear about your scary anaphylactic adventures during surgery. That’s not an unusual way for people to get diagnosed, sadly. Much better to know before and premedicate (and choose the agents carefully), which can decrease the likelihood of that kind of reaction! Your allergies are common in our community as well!
Regarding tendonitis, it is not a recognised symptom of mastocytosis (in the research literature) though general joint pain is definitely described in some of the literature. More common is pain in the long bones, which can be seen in some types of scans. It is always possible that mast cells are involved in symptoms we have because they send out lots of chemical mediators that can cause inflammation. One approach is to see if you’re doing the most you can to minimise the effects of those mediators (taking H1 and H2 blockers such as fexofenadine/cetirizine/loratidine and ranitidine/cimetidine/famotidine/nizaditine; anti-leukotriene such as montelukast; mast cell stabiliser (nalcrom or ketotifen– though this one is hard to source at present). If they are as controlled as they can be, that’s a good starting place. Then it would be the usual approaches to tendonitis– which is limited by your NSAID issues, as well.
A few things we want to make sure is that every new patient has two epipens (and carries them and knows when and how to use them!) and has downloaded the anaesthetic protocol. And as an adult with SM, we strongly recommend that a bone density scan is done as bone thinning or thickening are both possible complications. It is usually repeated every three years unless there is something to address. A calcium and Vit D supplement is also something to discuss with your doctor.
Very warm welcome!
Hi Jackie! I’m so sorry to hear about your newly “upgraded” diagnosis. That sounds like a lot to take in all at once! The most common form of “Advanced Systemic Mastocytosis” is actually some form of SM (either indolent or aggressive SM) with an associated haematologic (blood) disorder. While lymphoma isn’t the most common form of associated haematologic disorder with SM, it is certainly one that is known. The pericardosis isn’t something I’ve heard about (which doesn’t mean it doesn’t happen sometimes– but isn’t something that I hear about at the research conferences on mastocytosis as a common symptoms). I wonder if you would like to chat by phone, including about the trials that are ongoing for advanced forms of SM, if your haematologist isn’t already aware of them. Sending very best wishes! Jess