Calcinosis

[Maz]

Nancy, Cheryl will know for sure…but I recently rechecked something about “manuka honey” being helpful for digital ulcer healing, too. If you put that in the search engine, it might be an additional resource for you.

Peace, Maz

[ideamktg]

Thanks so much, Maz.  Amazing stuff.  I shall give it a try.  Nancy Blake

SD(CREST),mino.2yrs. 

[Goodwife]

maz,

After reading your post about the manuka honey, I googled it and was amazed (if it is true) the improvements in the pictures of healing sores, ulcers, etc.  I ordered some – probably too good to be true – do you have any experience or knowledge of it working this well?

 

thanks for the info.

[Goodwife]

Nancy,

I believe Cheryl's daughter used nitro bid paste, as well as viagra (not together, I'm sure) – not sure what she is currently doing, or if she still has issues with ulcers.  My hubby could not tolerate the n itro at all.  Gave him intense headaches.  Haven't tried the viagra, am going to try this manuka honey – I can only hope it works as well as stated on the website.

[Maz]

[user=44]Goodwife[/user] wrote:

After reading your post about the manuka honey, I googled it and was amazed (if it is true) the improvements in the pictures of healing sores, ulcers, etc.  I ordered some – probably too good to be true – do you have any experience or knowledge of it working this well?

Hi Goodwife….I wish I could tell you I knew more about it. I just remembered someone on the BB mentioning manuka honey, after Lynne posted about it recently in the context of nasal infections, and I did a BB search. It had been discussed before and I was just shocked I'd remembered that little tidbit. Hey…maybe my brain cells are regenerating at last!! :roll-laugh: 

I really would like to know how you get on with the manuka honey for your hubby, though, now that you've gone ahead and ordered some. It does seem like it might be a nice, gentle alternative, with lots of amazing properties. Certainly worth a try!

Peace, Maz

[A Friend]

[user=145]ndpblake[/user] wrote:

…I mentioned that calcinosis was just a nuisance problem, however, I have changed my mind.  I have been searching for that topic in both the old and new RBF messages. I am sure it is there, but cannot find. 

Does Cheryl or anyone remember, or know of any treatment? 

Nancy Blake – Sclero., mino. 2 yrs.
 

Nancy,

I recently posted some information about calcinosis from a very interesting paper I found.  I especially remember it discussing the importance of magnesium and B vitamins, and also discussed some hazards of Vitamin D.  It was facinating how the deficiency/absence of magnesium may actually cause calcinosis. 

This is the link to my posted message on this BB:

http://www.rbfbb.org/view_topic.php?id=1302&forum_id=1&highlight=calcinosis

AF

[Cheryl F]

Hi Nancy, Great to hear from you!

Boy, I have a vague recollection about calcinosis, but I cannot remember any specific remedy that might address it.  I do recall hearing/reading that the body dissolves the calcium deposits over time with AP, I don't think that it is AP directly affecting the calcium deposit, but it might be, we know that there seems to be a relationship between calcium and mino, being that the mino apparently binds to the minerals.

Jess did use the NitroBid Paste, but that was for the Raynauds, not calcinosis.  She only had calcinosis one time and that resolved with the AP.

I don't know what  supplements your doctor recommended, but at one point, Jess used Bromalaine which is known to potentiate the antibiotic and may also have anti-fibrotic actions.  We also used Nattokinase and Lumbrokinase which can help to increase circulation and are also beleived to be anti-fibrotic. 

I wish I had something more specific that I had come across that acddresses calcinosis.  I know just about everything for Raynauds, Jess started using Viagra last fall and she loves that.  She rarely takes it, but on a cold day when the swim team has their workout in the ocean, it comes in really handy!

Cheryl

[awesomemb]

:)I have severe calcinosis but no ulcers. I went to Dr. T in Boston last month. He said Mino will soften the deposits and then it will bind to them and discard them out the urine. It will take a long time he said, but I have noticed my small superficial ones have improved. I take 75mgx2 daily. 😀 Regards, MB

[ideamktg]

Thanks to all of you  again for all of your suggestions. They are a great help.

Nancy Blake, SD,minocycline-2rs.

[Goodwife]

I am confused!  I think I am confusing ulcers w/calcinosis(?)  My hubby's fingers are still an issue – dark spot on fingertip, cracked skin around it – not necessarily an open wound, but maybe considered just under the surface of skin.  Not sure what calcinosis is???  Can someone explain – I googled it but it seems like calcium lumps on or under skin (?)

[MaryP]

I have calcinosis and “ulcers”.  The calcinosis I had on my elbow looked like a whitehead pimple.  It has disappeared within the past month.  YAY.  I also have pesky calcinoisis on my ear!  It started right after diagnosis and was on both ears, but one was ok-ish after a year or so.   This is different as it is hard and flakes off like protruding grains of sand.  The area is quite tender, but I just now noticed that the currently affected ear is mucho better…..no protruding sand!  Another YAY.  I'm hopeful this is clearing up too.  I initially had been told that not much could be done for it.  As it was more of an annoyance to me than anything, I didn't pursue treatment further.

The doc said that my ulcers (on my pinky fingers, middle knuckle area) are stage 1 ulcers;  skin change with no open wound.  They can be very tender, especially after a bath.  I soak them in hydrogen peroxide and then put anti-bacterial gel on them,  band aid them during the day, and leave them uncovered at night.  The tenderness disappears until my next bath and I repeat the routine as needed.  The frequency of tenderness have lessened greatly these past few months.  I'm thrilled they have never progressed further. 

Oh, oddly, right after I was diagnosed, I could not wear pierced earrings…gold, platinum, etc.  Nothing.  My lobes would become inflamed and weepy.  Calcinosis followed shortly thereafter.  Coincidence?  I never thought much of it as I figured I had bigger fish to fry than my lack of accessories.  🙂

[Goodwife]

Mary,

Thanks for your reply!  I now know my hubby does not have calcinosis – your 'ulcers' seem VERY similar to his.  He follows the same routine – peroxide, antibacterial ointment – does not cover them, though – maybe he should try that at night – I am hoping this manuka honey makes a difference – I am anxious to get it – should have it next week and will post on our findings.  THanks a lot!

 

 

[ideamktg]

I went to the hospital in December, 08, with pneumonia and minor heart problems which has turned into PAH (Pulmonary Arterial Hypertension).  I was given many anti-biotics, and came home with another prescription for an anti-biotic.  I went in the hospital with extremely painful calcinosis on two fingers.  Within a month they were healed.  I have to think it was the antibiotics because before they just got worse and worse, never healling.

I used to think why bother me with calcinosis – I have other SD problems,  but these became very bothersome.  I am so happy that I now can use my fingers.  One was on the index finger, and I never realised how often one uses the index finger!

____________________

Nancy Blake, SD (CREST) 9 yrs.

[lynnie_sydney]

Nancy – I found this post of Cheryl's back in October 08. Best, Lynnie

Hi Nancy, Great to hear from you!

Boy, I have a vague recollection about calcinosis, but I cannot remember any specific remedy that might address it.  I do recall hearing/reading that the body dissolves the calcium deposits over time with AP, I don't think that it is AP directly affecting the calcium deposit, but it might be, we know that there seems to be a relationship between calcium and mino, being that the mino apparently binds to the minerals.

Jess did use the NitroBid Paste, but that was for the Raynauds, not calcinosis.  She only had calcinosis one time and that resolved with the AP.

I don't know what  supplements your doctor recommended, but at one point, Jess used Bromalaine which is known to potentiate the antibiotic and may also have anti-fibrotic actions.  We also used Nattokinase and Lumbrokinase which can help to increase circulation and are also beleived to be anti-fibrotic. 

I wish I had something more specific that I had come across that acddresses calcinosis.  I know just about everything for Raynauds, Jess started using Viagra last fall and she loves that.  She rarely takes it, but on a cold day when the swim team has their workout in the ocean, it comes in really handy!

Cheryl

 
[/color]

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)

[ideamktg]

Yes, thank you for reminding me about Cheryl's message.  As I said, miraculously, the two terrible fingers have healed since I was in the hosspital in Dec. with pneumonia.  I don't know what anti-biotics they gave me, but I had several, and then they began to heal.  I don't remember that there was much healing on minocycline, but maybe.

I'll keep Cheryl's message because I have another forming on the other hand which is not bothersome, but probably will be.  They take a long, long time before they become more than a nuisance.

I am in the process of being on a drug research medicine for PAH (Pulmonary Arterial Hypertension), caused by Scleroderma, and I have to be on the way to Sarasota (3 times this week).  They are very careful about all the specifics.  I even have to wear the same shoes for the walking test.

Thank you for your interest and help.

___________

Nancy Blake, sd(CREST) 9 years

[Author]

Posts