I have raynauds (and sjogrens) in addition to Lupus. In the last month or so the raynauds is really painful and i have attack after attack. The doc gave me nifedipine - a blood pressure med. I am afraid because i have low blood pressure naturally - what if i faint or have a heart problem from too low blood pressure. I have resisited taking meds for this for a while but i have 2 black spots on my toe and the doc said if i don;t take anything then i will not like what may happen to my toe. That is very scary. Anyways if anyone has experience or advice on treating the raynauds i would appreciate it.
I took that medication last year. I didn’t feel like it helped me and I think I stopped taking it because of the aide effects. But I don’t remember what the side effects were. I’ve been on so many different Meds and stopped because of side effects. If you are worried about taking it you should discuss your concerns with your doctor and a pharmacist as well Sometimes the doctors don’t realize the complications of mixing several meds but a pharmacist should be better educated in combining meds and what’s not safe.
I was diagnosed with Raynauds last year. I found that cold temperature was a big factor to the onset of my attacks, but also stress caused onsets as well. I am not sure that the meds will ever stop the attacks, I stay warm, wear gloves and boots, and stay as stress free as I can. The doctor gave me a prescription for nitroglycerin cream that helps, and had suggested he could prescribe viagra, although the insurance would not cover it, as I would not be using it for it’s intended purpose, being female kind of negates any possibility of “maneuvering” the system. I hope this helps.
Amazing you posted this Meg! I was just saying "Wow my Raynauds was TERRIBLE last year/winter......I was put on High Blood Pressure Meds this past spring (cuz I had it bad, the pressure problem) oh & also a cardiac water pill too & THIS YEAR, I DON"T HAVE RAYNAUDS AT ALL, and it is COLD where I live too! I said, Hmmm, Could it be the meds, and now that I am reading this, I am thinking so! BUT on the other hand, I have very HIGH blood Pressure & needed it for my heart issue too. So it def. needs to be determined by the doc. SO if urs is LOW then maybe there is something else to help you? Let me know? But as u said, I do think the fact that the meds for HB press. do help blood flow and constriction of vessels that it indeed is beneficial to Raynauds, which is a similar problem. Just my opinion though, I am sure, others have had other experiences! Raynauds HURTS & is SO ANNOYING! I feel ur pain, I have been there! I understand ur frustration & hope u do find relief soon!!! Be Well! Suzie :0)
I have raynauds also where the pressure will start in my hands n feet then my body will itch and bring out onto hives. My derm finally found a soloution as I have to take ranitidine, singular, and cetirizine. Without the pills and if I get too cold here come the breakouts
I am not sure, but I have a question, my toes and my feet hurt and get a burning sensation, especially at night when I try to sleep, but letting the fan blow on it helps some. Is this from the raynauds?
Yes thats where it starts…u should check with your derm my doctor discovered my diagnois my taking an allergy test. But it started with my hands n feet.
It does sound like itt to me cuz I got that too when the Raynauds was bad!! Feel better!! Good Luck!!! Suzie :0)
fighter said:
I am not sure, but I have a question, my toes and my feet hurt and get a burning sensation, especially at night when I try to sleep, but letting the fan blow on it helps some. Is this from the raynauds?
I will ask my doc about nitroglyserine cream and in the meantime i guess i will start the blood pressure meds, hopefully my pressure does not go too low.
Suzie- It sounds like your blood pressure meds are helping your raynauds- that is great- like a two for one deal. Much better than the usual take one pill and then two others to deal with the first pill's side effects!
Fighter- it sounds like raynauds- my feet do what your describing - do your feet also go cold and blue or white?
I have severe Reynaud’s and scars on my finger and toe joints. They’re either like ice or on fire. I also tend to run low BP and would be afraid of any serious meds like that. I think I am going to try and see a vascular doctor once I’ve made rounds to my main group of -ologists. Hope you get something figured out soon =)
I hope that you will get some relults from the medication. I have never experienced extent that you descfribe. I have Raynauds and Sjogrens' and autoimmune hepatitus, and SLE. The last two bother me the least. But, Sjogren's and Raynaud's really make up the symptons.
That is to say that even if you just have Lupus, my doctor said to keep my extremities as warm as possible--has worked for me at all times. And, the colors range from blue to red, to white.
Hi MegLupusNewbie, thankyou for your post, i also have raynauds and know how painful it can be. My husband often makes me a hot water bottle for bed because of it. I also have one of these wheat bags that you heat in the microwave. Another thing my husband bought me for christmas a good few years back, was this melted wax bowl, where you put your hands in gloves, and let the wax melt onto the gloves, and then put those into another warming pair of gloves to keep you hands warm for quite a long time, the other bonus is that it helps keep you fingers softer. Its funny you should mention this at the moment, as i was saying only earlier that my hands and finger tips are playing up tonight, i can hardly feel anything with the tips of my fingers sometimes which makes it hard to pick things up. As far as what you doctor has prescribed, he has probably taken into account about your low blood pressure, and i think the drug you have been given works in a different way to how you are thinking. It helps more with the circulation, as people with raynauds have poor circulation normally. I have vasculitis as well. Alot of drugs can be used for quite a few different things. Let me give you an example, there is a drug called Amitryptelene, this drug can be used to help with pain in certain doses, it can aid sleep in other doses, it can also help children with bed wetting. So not every drug has a set dose for one thing, so the drug he has given you that is for Blood pressure normally, may also have a way of working with Raynauds without affecting the blood pressure to the extent you may think it will. I was a trained nurse, but gave up through needed to earn more, then health problems with Lupus. But honestly if you are worried, why not give him or her a call, they wont mind, and will be happy to allay your fears about this. I think the amount you will have been given of Nifedapine will be alot less than say if someone was to be treated with it for high blood pressure. It is scary when are fingers, hands and toes go black. My knuckles are also black at the moment, through poor circulation, and the tips are feeling almost dead at times, which scares me to death sometimes. Thats another reason its good to keep your fingers and toes moving to keep the circulation going, and warm them up with things that arent too overheated, it should be a slow but workable process. Like i said i have the wheat bag which i warm up, and the hot water bottle that i put inside something,. I dont put my fingers straight onto the hot water bottle in the case, i use the surrounded areas to help warm them up and get the circulation going again, even if it takes abit of time usually. I hope this helps you a little. Anyway take care, look after yourself, love and hugs Astrid40xoxox