Raynauds…does it get better or go away with AP?

[Anonymous]

Hello, any of you with Scleroderma and experience Raynauds, does it ever go away or get better with AP? I am on month 8 of AP and doing great. Raynauds was not my first sympton with scleroderma, actually didn’t start experiencing it till after starting AP. It hasn’t gotten any worse and I have never had any sores on my hands or toes but it is a nuisance as I am cold natured anyway. Will I always deal with this?

Thanks.

[richie]

Hi The AP improves the Raynauds –my internist added a calcium channel blocker that really helped tremendously –within one week I was able to get rid ofm the gloves and woolen socks !!!
richie

[gbaker]

Hi. Just to let you know that I have SD and also am doing very well on AP but the reynauds has been a bloody pest. My AP doc has changed my anti biotics hoping it will help but so it hasn’t. I will ask about calcium blockers. Thanks Ritchie.

[Anonymous]

Thanks for the replies. I can not take channel blockers as I take meds for my heart that would interfer. Doctor prescribed the cream but its a pest to use as I am always washing my hands. Was hoping with time the Raynauds would go away as has this disease progression 😉

[Maz]

@forgiven wrote:

Thanks for the replies. I can not take channel blockers as I take meds for my heart that would interfer. Doctor prescribed the cream but its a pest to use as I am always washing my hands. Was hoping with time the Raynauds would go away as has this disease progression 😉

Forgiven, are you taking systemic (not proteolytic) enzymes? There is some evidence to suggest that the sticky blood (hypercoagulation) that many SDers have to deal with may exacerbate the vasospasm that leads to Raynauds. These do thin the blood so one has to be careful to check with doc for interactions/contraindications, but many find systemic enzymes to really help Raynauds, reducing inflammation and for breaking down scar tissue (serrapeptase). Can take several months to kick in.

There are other methods for improving circulation (e.g. fIR sauna and chelation), but that is worth checking first because it’s so simple and inexpensive to do, relatively speaking, and you’re teetering on the verge of remission. Just thought to mention this in case it’s of interest in your researches.

[Trudi]

@forgiven wrote:

I can not take channel blockers

Magnesium is known as a “natural channel blocker”. I use magnesium oil and apply it topically. This might be of help.
Take care,
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?

[RevereRosie]

I have Scleroderma and my Dermatologist also said I have Raynauds. My feet and hands get cold yet the rest of my body is still going through “forever menopause”. I live in Florida, so the use of a heated pool is helpful to exercise in.

I’m been on AP for almost a month and so far, I’m still in pain in my wrist and discomfort all over. I’m waiting for the day that I can say, I’m free of pain.

Rosie

[lynnie_sydney]

Hi Rosie – please remember that this is a slow road to greater wellbeing. A month is no time at all in this approach. Have you read some of the testimonials of those with SD? May help for you to get a sense of timeframes for noticing improvements, which differ between individuals but is almost always longterm.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Anonymous]

Rosie, you are on the right path with AP. I started it soon after my diagnosis and it took 4 months to notice. It is slow but it will happen, be patient! I am here if you have any questions!! I am now pain free and hope to be in remission soon! I see changes every week that is exciting. Good luck to you!

[Anonymous]

Maz, excuse my ignorance but can you explain what systemic (proteolytic) enzymes are? I am interest in this and thanks! 😀

[Maz]

@forgiven wrote:

Maz, excuse my ignorance but can you explain what systemic (proteolytic) enzymes are? I am interest in this and thanks! 😀

Yes, there are two types of enzymes that are often discussed here – systemic and proteolytic enzymes. Proteolytic are used to break down proteins in the gut with digestion and usually taken with food. Systemic enzymes are different, as described in link below and taken on an empty stomach so that they perform different actions systemically (not to break down foods).

http://www.livestrong.com/article/363986-difference-between-proteolytic-enzymes-systemic-enzymes/

This link is to a site that is selling an expensive product (I have no affiliation with this product), but their blurb on how systemic enzymes work is helpful (taken on empty stomach or proteolytic enzymes become digestive enzymes):

http://www.neprinol.com/

http://www.swnutra.com/neprinol/pulmonary-fibrosis

Forgiven, if you type in “sytemic enzymes” in google and key words, like “circulation” or Raynaud’s” then you should find lots of things pop up for you to research. It’s important to be discerning about products, so you could start a new thread and ask people which brand they use. One that contains enzymes like serrapeptase or nattokinase, for example would likely be helpful. Some can potentiate the actions of abx, so be careful to research these, too. Also, these can thin the blood very effectively, so if a person is already on a prescription blood thinner, they need to ask about this supp and be carefully monitored by their doctor.

Lots of past discussions on the forum, too, if you want to use the search box at the top of the General Discussion area here. 🙂

[Anonymous]

thanks Maz. I am on a blood thinnner, that is why I can not take a channel blocker for the Raynauds 😥

[RevereRosie]

@lynnie_sydney wrote:

Hi Rosie – please remember that this is a slow road to greater wellbeing. A month is no time at all in this approach. Have you read some of the testimonials of those with SD? May help for you to get a sense of timeframes for noticing improvements, which differ between individuals but is almost always longterm.

Bless you, I needed the reminder. The pain in my wrist is so bad that some days I can’t take it anymore. I’m trying hard to be patient.

[RevereRosie]

@forgiven wrote:

Rosie, you are on the right path with AP. I started it soon after my diagnosis and it took 4 months to notice. It is slow but it will happen, be patient! I am here if you have any questions!! I am now pain free and hope to be in remission soon! I see changes every week that is exciting. Good luck to you!

Forgiven,

Thank you for your input. I knew it was a slow process but I was hoping for some signs of relief. I’ll try to be more patient. Thanks again. Rosie

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