I went to my GP as my nails are going pale - my toenails are very pale. I'm worried that I will lose my toenails in the near future without an adequate blood/nutrient supply.
Had some blood tests (namely Iron Studies and Liver Function) and they are all fine.
The opinion seems to be is that the microvascular changes in the extremities are creating the issues with my nails beds going pale.
I have EM only.
The GP and I talked about Aspirin long term and he also agreed that it was not a good idea at this point.
He suggested using Adalat (nifedipine) which is used commonly used to lower blood pressure. My blood pressure is only slightly high so its use would be to help via vasodilation.
Hi Ocker, You say you only have EM so does that mean that the cause of it has never been found? It sounds as though you have poor circulation with you worrying that you are going to lose your toe nails without adequate blood/nutrient supply. If that is the case then you really need to know why you have poor circulation as the treatment for it much depends on the cause. Aspirin would certainly help with circulation if it's that your blood is too thick and I can't understand why it wasn't a good idea, unless you have other things going on that you haven't said. As for the nifedipine what you need to avoid is your blood pressure going too low, particularly as you say it's only slightly high e.g. my husband was put on a similar medication and his blood pressure dropped too low and he ended up falling as he went dizzy due to his blood pressure being too low. Of course, that is only my opinion I am not a doctor and so don't rely on what I have said. I think you should go back to your doctor and just ask the question as to whether there is a chance that your blood pressure would drop too low.
Hi Ocker. I have had EM for about 4 yrs now and have been taking nifedipine for the past yr and have seen drastic improvement. I've never had high blood so I wouldn't worry too much about that. My doctor wanted to increase my dosage but my blood pressure was a little low so he decided against it. If your doctor recommended it then your must be a good candidate. I also take an asprin each day with my prescription but noticed the improvement within 3 days of starting the nifedipine and can honestly say it's been life changing for me personally.
I have EM. My GP was convinced I had EM AND Raynauds but I think he no longer believes this. The trouble I face in the foot area stems from the fact that that the balls of fire of EM are right next door to an area which is potentially prone to cold damage. I developed dry gangrene at the end of a toe around the time that diagnosis was taking place. I flirt with chilblains every year in an attempt to achieve cooling of the fiery balls of my feet. The risk of taking beta blockers is that you get reduced blood flow to the extremities - so I only use them at the height of summer when there is no risk of cold damage to my toes.
Very early on I was told that the process of EM necessarily involves the inflamed deeper skin tissue becoming engorged with blood, leaving the very peripheral skin tissue hypoxic (less oxygen than ideal) leaving that very peripheral tissue slow to heal. So paradoxically you get an excess of blood in skin tissue right next to peripheral layers that do not get enough! As you can imagine, healing to these peripheral skin tissue layers is poor because they are short of oxygen.
The long toes (second) on both my feet no longer bear nails.
So, the use of beta blockers will decrease blood flow to your toes and their nails. It will affect healing of those very peripheral layers of skin and I believe you will have an increased risk of cold damage. As always whether you have much choice in using them will depend on trading the benefits of their use against the costs. Hope this is of some use.
I think (and my GP agrees) that Adalat (nifedipine) was a trigger to develop EM in my case. I have found information which confirms it. Just be careful.
I have both raynauds and EM. Had the raynauds for decades before any serious EM symptoms. Went on verapamil and later nefipidine for migraines and raynauds. Then my EM developed. I finally went off and my EM symptoms improved greatly but did not disappear completely. Like the previous poster, I suspect the role of beta blockers in EM onset. I also had negative EM reaction to MG. Just be careful. We're all so different. It usually takes me about 2-4 days to determine impact of a new med, so that's the upswing. Good look!
I have never had this drug but have tried many others - We are Human Guinea Pigs when it comes to EM and treatment for it's symptoms - The only advice I can give is Be Very Careful of what medications you take - Always make it clear to the Doctor's that IF you have any adverse reactions OR it is making your condition worse then I would suggest that you Stop taking any more of it as you do not want to risk further damage to yourself - Seek medical advice as soon as you can - it is no good to continue with any drug that isn't making improvements for you - I have tried a few different medications and sometimes I might have a reaction to it straight away (a couple of hours) OR it might take about 2 to 3 doses (days) to make things show up.
I have stopped several medications that were 'on trial' for my EM and so glad that I did and never had any issues with the doctors saying - "Give it a chance to get into your system, it could take a week or two before you feel better" - This sort of Quackery should not be tollerated - It is NOT the Doctor who has the condition and you should know your own body - if something makes you feel terrible OR agrivates your condition then Your Body IS trying to Tell You something IS NOT right ..... It is no good continuing a drug just because the doctor told you to - Your Body IS the Best one to listen to ....
Basically Be Extremely Careful with any NEW Medication/s PLEASE ....
I must admit that these days I am always a bit worried about taking a new drug, which sometimes doesn't help. With any medications you have to weigh up whether the side effects are worth putting up with. I know that sometimes it takes a while to get used to them and very often the side effects disappear over time, but there are also times when taking a particular drug can cause serious consequences. We all react differently to medications, what suits one might not suit another, particularly if you have more than one illness. In my life I have had two really bad reactions the first was with atenolol when I went into anaphylactic shock and was within minutes of death, fortunately the doc came quick and gave me an adrenaline jab and a steroid one. I was allergic to it of course. Within minutes I was fine. Mind you, I have had trouble getting the hospital to make sure it's obvious in my records that I am allergic to it, each time I go to see a new specialist they never know I am allergic to it. I now wear a medallion with the info on, which is a good idea to have if anybody is allergic to anything at all, plus you can list all the medication you are on.
The second time was an interaction between Gabapentin and Buprenorphine, I was here on my own and in a coma for approx. 2 hours. When I recovered I looked up drug interactions and found that the combination of the two can cause a coma or even death. There are a couple of places on here where you can check for yourselves drug interactions and so not a bad idea if you are given something new.
I don't want to frighten anybody by saying this, but I just wanted to point out these things. frostbite you are right in saying that you know your own body, but at the same time always discuss it with your doctor before stopping medication, apart from times like my drug interaction then I took it upon myself to stop the Gabapentin, which was fine as it wasn't anything that would cause problems if I stopped it.
I have said many times that personally I think that doctors should diagnosis your illness, but it should be left to a pharmacist to prescribe the drug so long as they know which other drugs you are on and any other illnesses you have. Pharmacists have a lot more knowledge about drugs than doctors do, as that is what they are trained in. A doctor can't be expected to know about every drug there is, particularly a general practitioner.
Thanks everyone for the replies, it is greatly appreciated.
I only have EM in my feet at the moment and although it is very uncomfortable and at times a tad soul destroying, I certainly won't have it as bad as others here.
I have palmar erythema also.
Gravity pools the blood in my hands when they are low. My head feels like it will explode if my head leans over for too long.
Im with you in terms of being careful. I resist taking Panadol - let alone anything like this.
The positives I have at the moment are:
- After 18mths since my last tests my Full Bloods are very good. Something I have been worried about because I seem to react well after taking aspirin (Myeloproliferative Disorder?)
- I have been tested for what seems to be everything, all come back negative
- I have avoided medication thus far by managing around it. Taking my shoes off everywhere I can and reach for cool areas where I can (No ice)
The real negative I can see coming will be the loss of nails as I have no current solution to get them pink (healthy) again by improving their blood flow.
I presume many people also come to this issue.
The two largest toes on each foot have very white, pale nails and the fingernails are also noticeably pale. Seems like a matter of (short) time.
Thanks again everyone. We might not know much detail about EM but these forums are invaluable because combined, we are effectively the 'medical bell curve'.
Hi Ocker, I am glad that you got some good suggestions and help here! I have certainly learnt a lot by being involved in the forums, you sort of end up teaching the doctors in my experience!
What I would say is that much as it's a nice feeling it's a bit dangerous walking around barefoot if that's what you mean? I used to do that myself, but now I wear socks no shoes. The reason is that I have ulcers on my feet and the first one was caused by walking around barefoot and catching something, bringing a bit of skin off, which became an ulcer due to having poor circulation. I have Polycythemia vera, well I am saying I have but it could be any one of the things coming under Myeloproliferative Disorder as I only had one blood test the JAK-2 one and that was negative. However, I do have a high red blood cell count and so was told that I did have Polycythemia vera but secondary because the genetic test was negative. However, reading the link you put in your comment it seems that it's not 100% accurate the JAK-2 test and so there is a 5% chance that it might be primary. However, the haematologist said that as it was negative no further treatment was required, which I could never understand. Like you I have the blood pooling but in my feet not my hands and what you describe when you say that your head feels like it's exploding if you bend down is just what I am like.
Obviously there some types of medication that you have to have or you would die, but apart from that sort the more we can do without medication the better, as they all have their downside.
Fancy US edumucating the medical profession - Someone has to so it might as well be us long sufferers of EM
Cheers -
frostbite
sheltielife said:
Hi Ocker, I am glad that you got some good suggestions and help here! I have certainly learnt a lot by being involved in the forums, you sort of end up teaching the doctors in my experience!
What I would say is that much as it's a nice feeling it's a bit dangerous walking around barefoot if that's what you mean? I used to do that myself, but now I wear socks no shoes. The reason is that I have ulcers on my feet and the first one was caused by walking around barefoot and catching something, bringing a bit of skin off, which became an ulcer due to having poor circulation. I have Polycythemia vera, well I am saying I have but it could be any one of the things coming under Myeloproliferative Disorder as I only had one blood test the JAK-2 one and that was negative. However, I do have a high red blood cell count and so was told that I did have Polycythemia vera but secondary because the genetic test was negative. However, reading the link you put in your comment it seems that it's not 100% accurate the JAK-2 test and so there is a 5% chance that it might be primary. However, the haematologist said that as it was negative no further treatment was required, which I could never understand. Like you I have the blood pooling but in my feet not my hands and what you describe when you say that your head feels like it's exploding if you bend down is just what I am like.
Obviously there some types of medication that you have to have or you would die, but apart from that sort the more we can do without medication the better, as they all have their downside.