Alternative Treatments?

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Hi everybody! I'm really glad everyone is so welcoming here. I'm a

grandmother suffering from Raynaud's disease. My symptoms have

worsened as I have aged. I often have attacks that can last hours. In

the wintertime, sometimes it's every day. I don't make very much

money, and I am not old enough to get medicare. I have tried every

homeopathic cure, and nothing has helped. I am afraid I may need an

amputation in the future if something doesn't change. I have read a

few articles about using generic Viagra to treat Raynaud's symptoms,

and I was wondering if anyone has had any experience with this. My

primary care doctor is hesitant to prescribe it, as it's an off-label

use of the drug, but I am desperate! If anyone has experience with

this treatment, please reply or message me with any side effects you

experienced, and of course whether it worked! Thank you so much for

any help, this is a difficult thing to live with, and I feel better

knowing I'm not the only one.

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8 Replies

  • Posted

    I have not experienced the treatment you mention, but I have had four flolan infusions which helped a lot and since having a small wrist bone removed it has been better still. Good luck.
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  • Posted

    With Raynauds, when the blood-flow stops it really stops. Your hands will not regain blood flow until YOU warm them up.  Use warm water (not hot).  Do NOT wait for them to warm up themselves.   Personally, I must maintain a temperature higher than 80 degrees F. (27 C.). After 15 minutes without warmng up.. you will start to have damage, after 1 hour you will have permenent damage. It will continue to get worse with the years.
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  • Posted

    Hi. Yes, it get worst as you aged. My advice is to keep a hand warmer with you at all times even during the summer. That is what I do. I have one you recharge with electricity and is not too expensive. ah! don't forget gloves all the time. I have thin, medium , thick, you name it.
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    • Posted

      Tell me about your hand warmer, I'd like one! What make is it/where can you buy them? Are you in the UK? I have terrible Reynauds and gloves don't really help as my hands aren't generating any heat so gloves can't keep the heat in. I buy those little liquid pouches that you boil and they give off heat for an hour or so which is helpful, but you need to wear gloves to keep them in and I get reynauds even indoors. Any tips welcome! I have had this for many years and find statements like "after an hour you will have permanent damage" somewhat alarmist and unhelpful.
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    • Posted

      I Live in USA. I suffer attacks even during summer when I go grocery shopping. I never go anyhwere without this handwarmer. I only have one, but keep switching it between my hands and during winter I put it inside my mittens. It is wonderful.  We bought it online. its name is Energyflux and   it charges via either USB or AC adapter. There is also a new thinner version. I'm getting another one because I use it so much it ran out of battery often.
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    • Posted

      That's fantastic, thank you so much, I will get one or even two (I'm sure Amazon will supply). Today actually feels like winter for the first time this year here in London, so I am already suffering... indoors with the heating and my fingerless gloves on! I do not want to take drugs and have no faith in anything "organic" so need to treat the symptoms, not the cause (whatever that is!).
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  • Posted

    The real name of viagra is Sildenafil and the following excerpt from an authoritative US  source supports the use. You can show your doctor the information and see if they are willing to prescribe. The same source supports the use of some antidepressants ssri (e.g. Fluoxetine) which can help

    Phosphodiesterase type 5 inhibitors — In patients who have obtained some but inadequate benefit from a CCB and who tolerate that therapy, we suggest the addition of a PDE type 5 inhibitor and continue the CCB. In patients who do not benefit from the CCB, we either add a PDE inhibitor or try the PDE inhibitor as an alternative, depending upon the ability to tolerate the medications, if critical ischemia is not present. (See 'Severe symptoms despite oral and topical agents' below.)

    Based upon the available evidence and our clinical experience, we initiate therapy at a low dose (eg, sildenafil 20 mg once or twice daily) and increase the dose to 20 mg three times daily if no benefit is achieved. This dose is similar to that used in patients with pulmonary hypertension. A four- to six-week trial should be adequate to determine whether the combination is of benefit. (See "Pulmonary vascular disease in systemic sclerosis (scleroderma): Treatment", section on 'Phosphodiesterase type 5 inhibitors'.)

    Care must be taken to fully assess cardiopulmonary status (eg, for pulmonary hypertension) before starting combined vasodilation therapy. Systemic blood pressure measurements should be followed serially. When possible, we advise patients to obtain a blood pressure (BP) cuff and to monitor their BP daily at first until dosing is stable and then weekly thereafter, as well as when symptoms of hypotension occur.

    A PDE inhibitor should not be used together with topical nitrates due to the increased risk of hypotension. Other adverse effects that may occur include peripheral edema, palpitations, tachycardia, hearing loss, and visual disturbances.

    The increasing use of these medications in efforts to improve peripheral and pulmonary circulation in several disorders is discussed in separately. (See "Pulmonary vascular disease in systemic sclerosis (scleroderma): Treatment", section on 'Phosphodiesterase type 5 inhibitors' and "Treatment of idiopathic pulmonary fibrosis", section on 'Phosphodiesterase inhibitors'.)

    Efficacy of PDE inhibition — The efficacy of sildenafil, tadalafil, and vardenafil was best examined in a meta-analysis of six randomized controlled trials that included 244 patients with secondary RP [1]. There was a modest but significant benefit of PDE inhibitors on Raynaud’s Condition Score (RCS), as well as on the frequency and duration of RP attacks [1]. PDE inhibitors reduced the frequency of RP attacks by approximately 0.5/day compared with placebo, which is comparable to the reduction reported in another meta-analysis assessing the efficacy of CCBs in systemic sclerosis (SSc)-related RP (0.6/day) [2]. The RCS represents the level of difficulty experienced by the patient each day that is attributed to RP, and is assessed using a visual analog scale. Although the improvement in the RCS was significant, it was not a clinically meaningful difference [3] (see "Initial treatment of the Raynaud phenomenon", section on 'Assessment of the response to therapy') Additional well-designed trials involving more patients are needed to better assess the role and optimal dosing of sildenafil, tadalafil, vardenafil, and other PDE inhibitors in primary and secondary RP.

    sorry it is so long, and technical

    gary

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  • Posted

    My doctor has  me on a pill called nifedipine 90 mg.  It opens the arteries.  It comes in 30mg and 60 mg also.

    For sore fingers, expose them to direct sunlight maybe 10 minutes a day.

    Mary Alice 07882

     

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