Lindar
Junior Member
Posts: 52
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Post by Lindar on May 20, 2009 9:45:05 GMT -5
Hi All. I know this info was on old board and I can't remember a damn thing. Don't knw what's going on with me this past week. I've taken myslef off my meds for Raynaud's except for the asprin. I just couldn't handle the side effects I was getting. I did speak with my Rheumy prior to stopping the one. They had me on two blood pressure meds at same time. The weather is so hot here now and I'm wanting to put the furnace on. No air is on yet and walking around with 2 prs socks, slippers, fleece jacket and hot packs in my house. My husband and I dreading this summer. We're thinking of buying a window shaker unit and putting in one of our spare rooms so he can sleep in there when it's too hot. Anyway, sorry for getting off topic but what are some of the meds that you all are taking for Raynaud's? I've been on so many now. I'm seeing my SD Reumy tomorrow so I'll check back later tonight or in the am and see what kind of responses there are. Gotta go as my left hand/lower arm is going numb and falling asleep I guess..... Linda
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Post by steve201 on May 20, 2009 10:45:04 GMT -5
Lindar I've been on a couple meds for the reynauds myself and can relate...I am on diltiazem for this now..it's a blood pressure med but is often used for reynauds....simvistatins are also used....
I still get a little loopy when I've been sitting for quite awhile and then stand up...or there is a low pressure zone in the area...makes me feel badly...but mainly I get cold at work..sitting here with 2 vents on my sometimes is like sitting in a freezer...so..the company bought me a heater... I'm curious...are you also seeing someone for deep tissue massage???....I have endured that for yrs and seems to help loosen things up and also keeps the blood flowing...see if you can find someone that practices Hellerworks...it's rough..it hurts...but it helps...believe it or not...
Steve
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Post by klw1960 on May 20, 2009 11:13:09 GMT -5
Linda, I take procardia, aspirin and aldactizide. I never had BP issues and my now runs 90-60 average but I feel okay. Karen
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Post by thefangs on May 20, 2009 12:45:24 GMT -5
hi linda.......jeff was previously on viagara for the raynauds, but it had too much initial "punch" (if ya know what i mean.......lol), so they switched him to cialis, which is more time released. anyway, insurance doesn't pay for either of these, but his doctor was great in getting us a supply from the company. well, now we've been notified that they will no longer supply us with the cialis, so we are back to square one. they really do make a difference for him though, so we will make it work. laurie
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aajmom
Junior Member
Posts: 76
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Post by aajmom on May 20, 2009 14:00:14 GMT -5
Linda, I, too, couldn't get used to the side effects so I just deal with the Raynauds. Unfortunately, my case is fairly severe- it's in my hands, toes, and ears- and it has to be above 70 degrees with no wind for me to not have an attack. It's not always easy to live with- I am ALWAYS bundled up and carry heat warmers all year round!! Sometimes it "gets me down" as it can be a real nuisance- but for me it's better than all the side effects I was having from trying to treat the Raynauds. Good luck to you- I hope you find something that works for you.- Adriane
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Post by steve201 on May 20, 2009 16:01:08 GMT -5
Laurie does your ins. support or subscribe to merk medco??....mail order pharmacy....might try and get that cialis thru them...I get it thru them and it's low dosage at 5mg...so the ins. is paying for it...cost for 90 day supply is something like 30 bucks for me... give them a try or ask the ins... www.merkmedco.comSteve
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Post by joannern on May 20, 2009 17:12:08 GMT -5
Adriane and Steve I share some of your issues. My heater at work runs all the time. My co workers truly think I am crazy. Thank God I have my own office, but I do suffer with the AC when I have to walk down the halls or elsewhere in the building. I too carry handwarmers and gloves almost everywhere. When most are comfortable I am cold. I know if I am somewhre I feel comfortable the rest of the folks are melting. I always seem to get the seat in a restaurant that is under a blowing fan. I glare at the ceiling tiles when I enter and ask to be seated away from vents and fans but somehow I always end up with some annoying cold air blowing. I really like the looks I get in the grocery store when I am wearing gloves and it is August. At times my finger have been so immobile from the cold I have had to have the clerk take my debit card out of my wallet. I agree it really does get tiring.
Joanne
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Post by thefangs on May 20, 2009 20:49:58 GMT -5
oh, wow, steve!!!!!! i had totally forgot that you used to post that on the old board! i will have to do some checking, cause that is a heck of a better deal than what we're paying now. THANK YOU, laurie
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Lindar
Junior Member
Posts: 52
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Post by Lindar on May 21, 2009 7:20:52 GMT -5
Thanks everyone for the suggestions.
Steve, great idea about on-line pharmacies. I'm going to check into that with my insurance company.
Adriane - we sound like we're in the same boat. This past winter one of my ears started to get effected a little. But my hands and feet are bad. The weather has been very warm here this week but as soon as there is a breeze that's it for me, the sweater comes back out if I even get a chance to put it away.
Laurie - dr's have been talking about viagara (whatever the other name is??) for about a yr now. They've been trying to see if other meds will work first. I'll have see what happens today with my SD Reumy.
Linda
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becjo
New Member
You do not have a right to be a victim-Richard Harper
Posts: 44
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Post by becjo on May 21, 2009 9:50:44 GMT -5
They tried me on diltiazem for a bit, but ended up having some major side effects and had to get off it. So basically I just wear gloves and sweatshirts trying to keep warm. Living here in Central MN its cold and now its been a bit better; but when its real warm and people are running around with shorts, I am cold and trying to keep warm ;D AC is horrible for me and I am always trying to keep warm-boy do I some strange looks too ;D, but that is life. Even my feet get cold in the AC and I can have shoes and socks on and I get very cold-it takes forever to warm them up too. But I keep trying and try to do what is needed to keep warm.
Becki
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Post by jojo19551 on May 21, 2009 10:10:34 GMT -5
I take nifedipine 60 mg. I was on 90 mg but since I started taking grape seed extract my hands and feet have improved tremendously. I take one capsule twice per day. I am hoping to cut back to 30 mg in a few weeks. Best wishes, Jo Ann
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Lindar
Junior Member
Posts: 52
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Post by Lindar on May 21, 2009 19:51:24 GMT -5
Well, I went to see the SD Rhuemy today, unfortunately, it wasn't the one that I like. Anyway, he wants me to start a med called Lusartan 50mg. It's in the Angiotensin blocking vasodilators family. He also told me that if it doesn't seem to be working that I am to add in 1mg of Prozasin. Guess I'll see how it goes.
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becjo
New Member
You do not have a right to be a victim-Richard Harper
Posts: 44
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Post by becjo on May 21, 2009 19:58:30 GMT -5
With the new meds you will be on Linda; have you done any research on how well it works for Raynauds? Also, have you seen what kind of side affects it can cause? Its good to do some research on these two questions, because sometimes you do not get all of the information from your doctor or the pharmacist. I hope the new meds will help with your raynauds without a lot of side effects Take care. -becjo
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Lindar
Junior Member
Posts: 52
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Post by Lindar on May 21, 2009 20:43:33 GMT -5
Hi Becjo, I'm actually searching it on the net now, I won't get the rx filled until I do the research. I'm just wondering if I should stick it out for this summer and see how it goes without taking anything. If it gets to be too much for me to handle then I can always start back on meds. If there is a way to take one less med I'm in for it.
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Post by jeffn on May 22, 2009 6:31:23 GMT -5
Linda - does your Raynauds just effect your hands and feet? Thats what mine does but I remember reading here in the old days that in some the Raynauds effects the rest of the body or at least parts of it and actually restricts the blood flow to organs etc. I used to get a whole body shudder once in a while and then be REALLY cold for a few minutes. If yours effects just hands and feet I would say give the no meds plan a shot - like you say you can always start the meds later. If yours effects your internals I think I might check into the new med and with the doc. Just my two cents. I have tried, on occasion, Viagra and levitra. The Viagra did not seem to help me and I tried the levitra while snowboarding and my hands were toasty warm but while walking along at one point I had a brief event of light headedness and was quite dizzy.
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