Home Forums General Discussion Raynaud’s question

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  • #305165
    Jan Lucinda1
    Participant

    I have a friend with Raynaud’s. Her doctor suggested Viagra. How do you treat Raynaud’s? Anyone use Viagra? Replies would be appreciated.

    #354388
    Randy
    Participant

    Yes, Viagra, which is also marketed as Adcirca (they are both Tadalafil) for PAH do help some for Raynauds. Cialis is similar. I have used both. For maintenance during the cold months I get by with 10 mg Cialis each day or every other day. The Raynauds does not go away, particularly if it is really cold, but at least it is more manageable and my fingers aren’t so constantly cold.

    I am also experimenting with Grape Sed Extract, 50mg three times per day. I just got the okay from Dr. F. to try this and have started today. Hopefully it will work.

    Lastly, I would expect Kim to jump in about the effectiveness of saunas.

    We should just all move to the Caribbean.

    Randy

    Diffuse SD since Apr '07
    AP since Feb '08
    100mg Mino twice daily
    Stopped Clindamycin IVs Aug 2019
    "No one should profit over someone else's illness"

    #354389
    Anonymous
    Participant

    Last year I started taking jiaogulan herb for Raynaulds. J-herb increases your production of nitric oxide which improves circulation. It is used as a pain reliever for equine foot problems. Equine dose is 2 teaspoons per day. Human dose is 1 teaspoon. One t did not make much of an improvement but 1.5 t does help me a lot. J-herb can lower your BP so you must monitor that. http://www.naturalhorsetrim.com/Jiaogulan.htm This is a link to a horse site that has info on the herb.
    J-herb must be taken on an empty stomach. I mix it with a T of applesauce. Otherwise, I can not get it down.
    I will post more info if I can find it.
    Teresa

    #354390
    Anonymous
    Participant

    This info was posted by Eleanor Kellon DVM on the Equine Cushings yahoo group.
    I just read below that j-herb should be used as a tea for the best benefits. Maybe that’s why I have to use a larger dose.
    I buy j-herb from herbal.com but I have read you can buy organic jiaogulan leaves from vitaroyal.com . You have to call Lindsey at vitaroyal as it’s not on the website. But I didn’t check her human site.
    Teresa

    Dr Kellon wrote:
    J is one of the least toxic (in terms of ability to cause death) of any herb out
    there. The two major areas of possible side effects are in blood pressure and
    clotting. If you are taking antihypertensive medications or have low blood
    pressure, it could get too low. Also should not take it with Warfarin and may
    increase bleeding if you are taking aspirin.

    Yes, there is actually quite a bit of research out there on J, with more all the
    time. For example:

    J Food Sci. 2009 Jan;74(1):H1-7.

    A combination of grape seed-derived procyanidins and gypenosides alleviates
    insulin resistance in mice and HepG2 cells.
    Zhang HJ, Ji BP, Chen G, Zhou F, Luo YC, Yu HQ, Gao FY, Zhang ZP, Li HY.

    College of Food Science and Nutritional Engineering, China Agricultural Univ.,
    Beijing, China.

    This study investigated the effects of grape seed-derived procyanidins (GSP),
    gypenosides (GPE), and combination procyanidins/gypenosides on insulin
    resistance in mice and HepG2 cells. ICR mice were randomly divided into 2
    control and 4 treatment groups. The control mice were to receive either normal
    diet (ND) or high-fat diet (HFD), and the treatment groups were fed high-fat
    diet with either 80 mg/kg of GSP (GSP80), GPE (GPE80), GSP + GPE (1: 1, GSP40 +
    GPE40), or 500 mg/kg of metformin for a 6-wk period. All the groups of mice
    except the normal control were on high-fat diet along with fructose (15%)
    administered in drinking water throughout the period of treatment. An
    insulin-resistant HepG2 cell model was developed after 24 h of 5 x 10(-7) mol/L
    insulin incubation. The treatment of GPE80 could significantly reduce the index
    of insulin resistance (HOMA-IR) and increase hepatic glycogen concentration,
    compared with HFD group (P < 0.05). When GSP and GPE were administered
    simultaneously, synergic effects were observed in decreasing the HOMA-IR index
    and serum total cholesterol (TC) level and enhancing glucose tolerance. All
    treatment groups showed considerable raise of hepatic glucokinase activity (P <
    0.05 compared with HFD group). GSP application increased the consumption of
    extracellular glucose in HepG2 cells. Our data suggest that the combination of
    GSP and GPE may have functional efficacy in consumers with insulin resistance.

    ====================================

    There’s a good rundown of its history here:

    http://www.jiaogulan.net/Jiaogulan.htm

    As with any herb (or medication) there is always the potential for a negative
    response in any particular individual. However, the 1 tsp is about the amount
    that would be found in a tea bag (hot water extracts the active components).

    Eleanor
    http://www.drkellon.com

    I also found this on the Equine Cushings group

    The grapeseed and other plant antioxidants also stimulate nitric oxide
    production, just not as strongly as the J-herb. There’s no harm in using them together
    but they will be competing with each other for this effect. Try just the one.

    Eleanor in PA
    http://www.drkellon.com
    EC Co-owner

    #354391
    Anonymous
    Participant

    @Jan Lucinda1 wrote:

    I have a friend with Raynaud’s. Her doctor suggested Viagra. How do you treat Raynaud’s? Anyone use Viagra? Replies would be appreciated.

    The only thing that has worked for me for 15 years is keeping your core warm. All the drugs did nothing or worse for me. The center of your chest is where the cold sensors are for Raynaud’s to be triggered. If the core gets chilled the body sends a signal to clamp down on the blood vessels to keep the blood around the major organs thus causing a vasospasm (vessels tightening) and the result is Raynaud’s.

    Keep the core warm amd you will reduce the episodes. Layers, layers, layers. Undershirt, thermal underwear, vest etc.

    Donna S
    Ottawa, Ont. Canada
    Scleroderma, Lupus, Mixed connective tissue disease. 1995
    1998 Antibiotic Protocol

    #354392
    gordbentley
    Participant

    ummm wouldnt taking viarga do something else to you as well?? lmao i dunno if that would be a positive side effect at certain times?? lets say strolling through your local grocery store. sorry but i had to crack a joke on this one ๐Ÿ˜†

    #354393
    Parisa
    Participant

    My husband tried Viagra and all it did for him was give him a real bad backache that lasted 4 hours. Then he tried the Cialis and he had a backache that lasted 3 days. However, that was his personal experience and if you have bad Raynaud’s you’re pretty willing to try anything.

    The best thing for him was to keep his hands as warm as possible which meant the constant wearing of gloves. I’m glad to say that the Raynaud’s is pretty much a thing of the past except for in really cold weather.

    #354394
    aynurrzepa
    Participant

    @Randy wrote:

    We should just all move to the Caribbean.

    Randy

    Or you should just come to Dubai! ๐Ÿ˜‰ And yes, layers – they are really fashionable anyway ๐Ÿ˜€

    I never took calcium channel blokers but if I woudl need I would probably take Adalat/Nifedipine. I read both viagra, levitra have potentially serious side effects. So does diltiazem. I am sure Adalat also has the side effects but probably not as bad as the other ones…

    Check this link out

    http://www.yourlawyer.com/practice_areas/defective_drugs

    #354395
    Kim
    Participant

    So as not to disappoint Randy……………yes, yes, yes, I think saunas should be mandatory for anyone with Raynaud’s. ๐Ÿ˜‰ Thinning blood and improving circulation is the goal and saunas are the best tool I’ve found. The disposable hand warmers are great to carry in your car and purse.

    Take care…..kim

    #354396
    richie
    Participant

    Hi–As Donna mentioned –the most important thing is to keep your core warm —-dont permit yourself to get “cold ” –Viagra has proven to be an effective treatment for Raynauds –I still use Adalat XR with great success –the Raynaids is basically non-existent now -even in winter –As to that equine thing I understand the side effects are a craving for oats and an uncontrollable urge to run around a track lol —
    richie

    #354397
    MINOCINMAN
    Participant

    @richie wrote:

    Hi–As Donna mentioned –the most important thing is to keep your core warm —-dont permit yourself to get “cold ” –Viagra has proven to be an effective treatment for Raynauds –I still use Adalat XR with great success –the Raynaids is basically non-existent now -even in winter –As to that equine thing I understand the side effects are a craving for oats and an uncontrollable urge to run around a track lol —
    richie

    Richie: Where do you get it, dosage, frequency, cost? Do you take it only in winter?

    #354398
    Anonymous
    Participant

    Richie,
    Yes, I do crave oats. haha

    I spend several hours a day outside caring for my horses. I do keep my core warm with layers but that doesn’t help me.
    My savior is battery heated gloves made for motorcycle riding. They are expensive at $180 but I could not care for my horses w/o them. I have to take them off to do some things and when my hands get too cold I can put them back on for instant warmth.
    I buy them at http://www.adventureag.com
    Teresa
    currently looking for an AP doc
    still on pred and enbrel

    #354399
    Jan Lucinda1
    Participant

    tjesse-
    You should post a picture of your horses. Would be nice to see them.

    Jan

    #354400
    JOJO19551
    Participant

    I have a infrared sauna and I also take grapeseed extract, 50mg for every 50 lbs you weigh. I work in a large doctor group and 3 of my physicians and 3 of my nurses take grapeseed extract for thei Raynaud’s. I swear by it. JoAnn

    #354401
    mschmidt
    Participant

    I’m a little delayed in responding to this post but, I’m going to mention another option, that I’m sure many here will squirm and question. I have Lyme Disease and SD so, I can appreciate the concern about putting another “toxin” in the body. I did A LOT of research on this for months before feeling comfortable enough to pursue it as an option, as well as had extensive conversations with top SD doctors and LLMD’s. There have been numerous studies on the use of Botox injections in the hands and feet to help ward off the symptoms of Raynauds. I agree with what everyone else has said as ways to treat it as well, and have tried several, and can appreciate the success everyone has had with different ways to treat Raynauds. This was a very personal decision for me, and the only doctor that was concerned about Botox was my LLMD, who said that putting a toxin in my body to circulate through my bloodstream wasn’t recommened. After doing research, I found out that when botox is injecting into an area of the body, it doesn’t “disperse” throughout the body–it stays in the area where it’s injected. So, the logic behind using it for Raynauds is that it actually stops the spasming that leads to Raynauds. I was very skeptical but, made an appointment with a top Midwest Plastic & Reconstructive surgeon, specializing in micro-hand surgery (specifically Digital Sympathectomy, for severe cases of Raynauds that lead to digital ulcerations and gangrene). He’s a miracle worker, with saving very deformed and ulcerated fingers of SD patients. I got injected 5 times on the palm of each hand, as well as at the top of each foot. I have to say, it has been life-changing for me the last week. Do my hands still get cold? Yes but, they don’t turn pale white, and the capillary fill happens so quickly that you can’t even tell I have Raynauds anymore. I also have slight contractures in both hands, and I’m able to stretch my fingers better–even can crack my knuckles, which is making it easier for me to do my hand exercises. My doc feels it’s a good preventative for me, since I’ve never had ulcerations of any kind but, also is very beneficial to those who experience ulcerations.

    I know there’s a lot of controversy about Botox in general but, both Dr. F. and my local Rheumy approved it, and I know once my LLMD sees that I’m fine, he will be less concerned. It’s been bitterly cold the last few days, and I’ve been able to be outside for the first time in 2 years without having a Raynauds flare–only wearing thin gloves! Now, this has been MY experience but, I wanted to share with everyone. I feel great, and one of the only reminders that has made me self-conscious in the wintertime is hiding my hands in public because my hands were ghastly white. Now, I have the confidence to not have to worry about that anymore. And, it’s covered 100% by insurance, if the doctor writes a letter of necessity to the insurance company. It was approved by the FDA for Raynauds secondary to AI disease last year. Do your research, and see if it’s something that appeals to you. I personally don’t want to take another medication, and have tried all the natural supplements out there, without success.

    Just a thought, and I’m more than happy to discuss with anyone about my experience.

    Maria

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