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I don't know if any of you have this problem —- yeah, I have a lot of problems :doh:.
:blush: I will be okay. La la la…. [/color]
Last year I found I had developed Raynaud's. It has been bothering me since then
If I lay down, my hands/feet become warm and my nose becomes cold. If I stand up or sit up, my hands get very cold even in the hot summer.
My hands color is purple blue. But if I raise my hands up, they turn normal color.
My hands and face are swollen in the morning after a night of sleep. I can hardly clench my fists tight when I get up. My swollen hands get better in the evening.
I know it's a bad circulation problem. What type of specialist should I go to see for circulation problem. I have been seeing lung doctor. He said it's due to my raynaud's. My echocardiogram is normal.
Thank you for listening.
JB
JB,
I will share with you what Jess' AP doctor/ rheumatologist told us.
First, I need to say that Jess has a prescription for Viagra that she takes “as needed” when she knows she will be really cold.
At Jess' last appointment with Dr. F, in going over the meds she is on, she told him that she takes the Viagra from time to time. He told her that raynaud's is an entire body problem, you may only see it in your hands and feet, but it is affecting the internal organs (heart, lungs, kidney) too. He wants her on the Viagra regularly now.
I do believe he knows what he is talking about and if your raynaud's is bad, I think you need to address it, and not just for comfort. I would think the lung doctor you see should be familiar with the use of Viagra, it is used for PAH and to prevent PAH in scleroderma patients. That is how they were able to justify it to be covered by insurance for Jess.
Talk to your doctors about treating the raynaud's.
Cheryl
Sorry to interrupt this post but, Viagra for Raynaud's? Is it a vasodiallator? What does PAH stand for? I also have Raynaud's and was recently diagnosed with early stage scleroderma. Your daughter was kind enough to respond to me about her AP, and how she's nearly back to normal because of it. I believe she forwarded you my email address to answer some more specific questions about AP. Right now, my insurance won't cover Minocin but, I have an open prescription for generic minocycline, which I figure is better than nothing. I started taking it last week, and have an appointment with a doc familiar with AP early January. Thanks in advance for your help.
Maria:)
Maria,
Yes, Viagra is used for Raynaud's and Pulmonary Arterial Hypertension (PAH) which is a common complication of progressive systemic Scleroderma. But Jess was never diagnosed with PAH, she had beginning lung involvement, but the CT scan of the lungs turned up negative.
Viagra was originally developed as a heart med, the “side effect” for which this drug is now heavily marketed was a side benefit in terms of profits, I'd bet that it wasn't $10 a pill when it was primarily a heart medication. If you do a Google search with the words “viagra” and “raynaud's” you should find some artcles about some clinical trials that showed positive results that were done in Germany a few years back.
I actually asked Dr. F for the viagra for Jess, he said, “I haven't heard of that, but it makes sense!”
Although Dr. F wants Jess on it regularly, she still takes it intermittently, just because she is busy and forgets. It is a fast acting drug that can bring near immediate relief from a raynaud's episode.
And Maria, the beauty of this forum is jumping into a discussion and asking your question, always feel free to chime in, that is how we all learn and support each other.
Regarding the generic Minocycline, JeffN a patient of Dr. T's in Boston has experienced great improvement on generic minocycline. The brand vs. generic is a continuing debate here on the RBF BBOARD. One that is likely not soon to be resolved. One recovered scleroderma patient I know, who is a PhD in Pharmacology, a retired Pharmacologist who spent a long career developing drugs for 'big pharma', he insists that the generics are bio-equivalent. Later I will find an old post of his regarding this issue, hopefully it will put your mind at ease that you can and will recover taking the generic minocycline.
Cheryl
Generic Minocycline is actually quite good. There have been a few patients who reported not responding to generic Mino but it is rare for that to happen. You are mostly likely just fine on generic.:)
Cheryl & John,
Thanks so much for such a warm reception, support, and guidance. I started taking the generic last Tuesday, and it actually made me have a headache for a few days–which I didn't mind because if it means it's working, bring on the headaches!! I was taking 100mg twice daily until Friday, then read some protocol that I'm actually only supposed to take it MWF. I'm waiting for the book I ordered about Scleroderma treatment (Scammel?), which should be here this week. I can't get into a doc open to doing the AP until January so, I figured that taking it ahead of time would do me more harm than good. Should I be taking it daily? Thanks again for your insight.
Maria
Maria,
The study done at Harvard for AP for scleroderma used the dosage of 100 twice a day everyday. From what I have heard and learned, most of the experienced AP Doctors use the daily dosing for scleroderma, not the M-W-F dosing. However, if you are having headaches, you might want to start slowly and bu ld up to the full twice daiky dose, with your docs approval of course!
Cheryl
Hey JB. Have you been tested for hypercoagulation (thick, sticky blood)? A lot of SD people have it and it can be very dangerous leading to stroke. I tested high for it and am trying to treat with blood-thinning supplements, but my Lyme doctor wants me on heparin injections, which I may have to do. Your body has to work extra hard to pump this thick blood — not good, and contributes to these circulatory problems.
Kim,
I had a hypercoagability study done in September, and that is how they found a paraprotein called “MGUS” in my blood. Thus started the chain of testing, and ultimately, my diagnosis. Since I was originally diagnosed with Vascular Thoracic Outlet Syndrome by a vascular specialist in February, they suggested I have those tests done because that can be a cause of swelling in the arms and hands. At that time, I had no skin thickening–just bad swelling, and nerve pain/radiculopathy.
(I still have a population of MGUS proteins laying around in my bone marrow, as determined by a bone marrow aspiration 2 weeks ago) They were concerned about Multiple Myeloma, since it can cause scleroderma-like skin changes. They only found 4.5% of this protein in my marrow so, they basically ruled out Multiple Myeloma for now. I have to continue to be tested every few months, though. I felt like my blood was stagnant, it it would certainly make a lot of sense that it would cause circulatory problems…but, so far, nothing like that has presented itself in my bloodwork.
Did you have hypercoagability study done? What specifically did they find?
Maria:)
Maria – Most SD (scleroderma) patients who post here are on the Harvard Protocol pioneered by Dr. T at Beth Israel hospital. He uses twice daily dosing and generally encourages patients to dose on an empty stomach. There aren't so many SD patients and the disease is pretty threatening so not so many docs have experimented with dosing. If it worked for Dr. T then that is what they will do. Dr. T may or may not believe that the disease is microbial. He never really has taken a position on that. If it is microbial then it isn't terribly different from the other rheumatic diseases and it will respond well to MWF or alternate day dosing. If it truly is an idiopathic, auto-immune disease and if the principle action of Minocycline is anti-inflammatory and/or anti-collagenase then perhaps twice daily dosing is superior. Unfortunately for you, you have to read all you can and then you and doc make your best guess.
However, that said, I have been watching this bulletin board for around 4-1/2 years now. The vast majority of patients, whatever they have, seem to prosper whether or not they dose daily or dose on alternate days. That is, whatever choice you make between the two seems to be a good choice compared to not taking minocycline. So do make up your (and doc's) mind, but don't panic that you won't get it just right whilst you are learning.
Do read both of Henry Scammell's books, the one about arthritis as well as the one about scleroderma. It will be hard for you to get too much information. Also, check out Amy Proal's introduction to the Marshall Protocol at this location: http://bacteriality.com/2008/05/07/mpintro/. The protocol is controversial, or at least Marshall is, but it is chock full of interesting science and it will inform your questions and your quest.
Keep doing what you are doing, staying informed and active in your treatment, and you will do well. I am certain of it.
Regards,
-john
Kim,
I will get this tested. I will call my IU doctor tomorrow, hopefully they can add this one on. Thanks for telling me this. JB
[user=977]mschmidt[/user] wrote:
Kim,
Did you have hypercoagability study done? What specifically did they find?
Maria:)
Maria, The test that I had was the MOCHA Panel and it has four parts:
Fibrinogen Activity, Fragment 1+2, T/AT Complexes, Factor II Activity
I tested high in 3 of the 4.
Hi All–
I came across this excellent newsletter regarding hypercoagulation:
http://www.nutri-linkltd.co.uk/documents/Newsletter-Nattokinase2webprotected.pdf
Interestingly, if your blood is hypercoagulated, it lacks in oxygen; oxygen is needed to kill off bacteria–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Thanks for the article, Trudi. Hemex Labs is the lab that my doctor used. I know hyperocagulation is serious and that I need to do more than I am currently doing. It all gets a little overwhelming.
Hi JB,
If you have a circulation problem, maybe you could try MSM as this acts as a blood thinner as well, as long as you are not taking other blood thinners.
Just a suggestion as I have read it is good for Raynauds…………Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.
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