So my Doc has finally agreed to start me on a calcium channel blocker called Diltiazem. we are starting on a very low does since i have bad reactions to all the other meds. so 30mg once a day and after 2 weeks if all is well we will up the dose....wish me luck....he says we are on plan F now and if this dont work he dont know what to do next.......
fingers crossed, stay strong :)
Hi lovely nikki
I will be very interested to hear how you get on with this. I am beginning to think one needs to hit sodium and calcium channels in several different ways at once.
Very good luck with this
Cheers ajh
Hi Nikki, hope it helps. Let us know! Is it for pain or heat? Or both?
Frances
so i have been of the calcium channel blocker 30mg once a day for two weeks now....there has been no change and no side effects that i have noticed.......so the doc is starting me with 30mg twice a day now.....we shall see how it goes.....
Hi Nikki, I take a mixture of Nifedipine (calcium channel blocker), Imipramine (SSRI) and Pregablin (anticonvulsant for pain) and half an aspirin every day and this seems to be a good combination for me, I understand that calcium chanel blockers are used to treat EM quite a lot so I really hope it helps, but everyone responds differently. Good Luck!
Hi MsLovelyNikki!
I hope this works out for you. I was put on a CCB (amlodipine) and it made my EM worse. It's funny, since my rheumatologist was convinced that all my symptoms were related to Raynaud's (which I also have), which is often treated with a CCB. I knew I had 2 different diseases going on, but tried it anyways. I don't mean to scare you, it's just my personal experience. But if it works for you, excellent! :) I do hope this is successful for you!
Leann
Got Amlodipine prescribed today so I'm curious whats gonna happen. Kinda scared of what you saying but Im gonna give it try. The truth is Raynauds been bothering me a lot lately. I believe its def related to my EM, when I dont get Raynaud's attacks I dont get EM flares. So, wish me luck too. :)
leelee28 said:
Hi MsLovelyNikki!
I hope this works out for you. I was put on a CCB (amlodipine) and it made my EM worse. It's funny, since my rheumatologist was convinced that all my symptoms were related to Raynaud's (which I also have), which is often treated with a CCB. I knew I had 2 different diseases going on, but tried it anyways. I don't mean to scare you, it's just my personal experience. But if it works for you, excellent! :) I do hope this is successful for you!
Leann
I also hope it helps you, My Dr. took me off calcium channel blockers
Told me Mayo Clinic states this
- avoid calcium channel blockers which cause vasodilation; – though it is also listed as a treatment in some cases…
So I have been on another BP med.
So, just a short update. I'm on amlodipine for the third day, seems its really helping with my raynauds and as i expected since it improved raynauds it has also improved my EM hands. interesting fact is my hands are warmer now, much more puffy, even more red but no pain! im def gonna keep using this meds and will see what elses gonna happen. :)
xoxo, Liz
That's wonderful news liz! I'm so glad it's working out for you!!
The puffiness and warmth is due to how a calcium channel blocker works (and why is works great in Raynaud's) - it causes your blood vessels to dilate (or open up), increasing blood flow through them. Since Raynaud's (and interestingly EM too) has to do with constriction of those vessels, the CCB counteracts that. But the side effect is bigger vessels = more blood = more fluid that leaks out into the tissues. So you get warmth and redness from the increased blood flow and puffiness from some leakage of fluid in your blood into the tissues. As long as you can tolerate that (and have no pain!! woohoo!) then it sounds like this will work well for you!
Keeps us informed on how it continues to go :)
Thanks Leelee, I was pretty worried what could happen, but my new GP doc seemed to really believe it could help and yay it did! :) It's always great to find a doc who is really interested in your problems and despite he has poor knowledge about it (as almost every doc has) hes tryin to find out as much info as possible.
I am on CCB 3 times a day at 30mg now and i think i am noticing a difference, my pain has been less painful.....
Yay, good news! Keep us updated!
I'm on 10mg Amlodipine daily, which is max. dosage and yes, its helping a lot! Gotta say 5mg been workin for me pretty good, but then I noticed it changed back to "normal", so thats why the doc increased my dosage. I hope the good effect's gonna last.
MsLovelyNikki said:
I am on CCB 3 times a day at 30mg now and i think i am noticing a difference, my pain has been less painful.....
Hi Leann, I'm curious about the CCb making your EM worse, as I've been prescribed something which also dilates the blood vessels, and I think it's making the pain worse. I have a similar experience in that I think my Reynaud's is a separate condition - it clears up in the summer, while the EM gets worse. Did your symptoms revert to baseline after you stopped taking the amlodipine, or was the worsening a permanent effect? Just wondering how safe it is to experiment!
all the best
Frances
leelee28 said:
Hi MsLovelyNikki!
I hope this works out for you. I was put on a CCB (amlodipine) and it made my EM worse. It's funny, since my rheumatologist was convinced that all my symptoms were related to Raynaud's (which I also have), which is often treated with a CCB. I knew I had 2 different diseases going on, but tried it anyways. I don't mean to scare you, it's just my personal experience. But if it works for you, excellent! :) I do hope this is successful for you!
Leann
so my pain is starting to get worse again. i am going to have to up my dose of CCB....i am now at 30mg 4x a day. now to figure out where to go from there.
Study: Disrupting Calcium Channel Communication Key To Reversing Chronic Pain