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I’m in remission from Diffuse Scleroderma. In July, I broke a finger in a random accident. My docs ordered a bone density test and were suprised to see that I have osteopenia — only one point away from Osteoporosis. I have never taken steroids, I don’t smoke, I exercise regularly… I’m so bummed by this news. With my lifestyle and age (41) my docs did not expect this outcome. They believe it is related to the autoimmune disease.
Has anyone else on this forum had bone density problems? Do you think it is related to autoimmune disease? How did you opt to treat the problem?
Thanks, KimHi K;
If you read http://www.marshallprotocol.com Dr. Marshall goes into this quite extensively.I have osteoporosis and the only nice thing I can say it that it is reversing with a LOT of exercise.
Lynne GKim,
I’m putting together my own protocol to treat my osteopenia. I exercise, have never smoked or taken steroids but it is still an issue for me. I am taking Vitamin D and strontium. The hip pain I was having resolved within three weeks of starting this. Is it related? I don’t know for sure as I won’t be having another scan for at least a year. I also will probably add in Vit K.
@kowens wrote:
I’m in remission from Diffuse Scleroderma. In July, I broke a finger in a random accident. My docs ordered a bone density test and were suprised to see that I have osteopenia — only one point away from Osteoporosis. I have never taken steroids, I don’t smoke, I exercise regularly… I’m so bummed by this news. With my lifestyle and age (41) my docs did not expect this outcome. They believe it is related to the autoimmune disease.
Has anyone else on this forum had bone density problems? Do you think it is related to autoimmune disease? How did you opt to treat the problem?
Thanks, KimHi Kim,
One person you might like to speak with about this is A Friend, as she has posted quite a bit about acidosis and how an acidic, diseased state in the body can result in the leaching of minerals from our bones to bring the body back into homeostasis. This theory has been blasted by the mainstream for being a bit ‘out there’ and, bascially, quackery, because the body is always seeking homeostasis and you’d be close to death if in a state of acidosis…well comotose, actually. The point being, however, that it is because the body is constantly seeking this homeostasis when stressed by disease that it begins leaching minerals from the bones in an attempt to alkalize and balance the body. The effort is fruitful, but the bones are the collateral damage.
One of the ways that conventional medicine attempts to correct osteopenia or osteoporosis is to simply replace calcium, but the drugs used for this have been found to have their own set of serious issues, including the production of bone spurs, severe reflux, kidney and gall stones, arterial plaques, etc. Why? Well, likely because in order for calcium to be properly metabolized and assimilated by the body, it needs adequate amounts magnesium and Vit D. The miracle of magnesium is that it also reduces body pH and lessens the need for the body to leach calcium from the bones.
A Friend has some wonderful links on all this and, if the search function was working, you’d be able to look it up. Hopefully, she will see your post, though, and be able to fill you in with more detail and resources to research. Otherwise, you could try PMing her.
Hi Kim,
I have full-blown osteoporosis and wish I had it figured out, but I don’t. Mine is probably mostly genetic, but surely being sick didn’t help. I’ve worked hard on gut health for better absorption, exercise and eat well. I have flatly refused to take the prescription osteo drugs and had to endure the wrath of my doctors as they were waving my results in my face. 😡
Take care…..kim
I recently had my L hip resurfaced and prior to the operation my bone density was checked. Yes, my hip was in the osteopenia range. I was shocked about this, as I have been a competitive athelete all my life. So, why the lose in bone density? Was this due to SD? I believe the answer is yes, but in a roun-about way. I believe that those of us with AI’s who are sidelined and unable to keep “pounding” on our joints lose bone density. This makes sense. The same thing happens over time naturally to anyone who essentially doesn’t exercise.
The awesome news for me is that now that AP has worked so well I will restart my running and other pounding type exercising. As a result, my bone density will certainly return to normal naturally.
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"If you need anything to help convince you to stay away from the biphosphonates, read this article from Wednesday’s NY Times
http://www.nytimes.com/2010/11/11/health/11bone.html?ref=healthI was also diagnosed with osteopenia, a little before my RA diagnosis. I was on Fosomax for one year. The more I read the more frightened I became of the drug. And then I read something in Andrew Weil’s book on healthy aging that really spoke to me. He wrote “don’t take strong medicine for mild disease”.
I stopped. My bone health has not improved, but it has stabilized. I am very petite and that is a common marker for thin bones. But that cure is worse than the disease.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Bonnie – you can do much for your bones with good Magnesium supplementation (2 or 3:1 to calcium), a little Vit D and boron; making sure your hormones are sufficient (later down the track investigate bio-identical progesterone) plus some weight bearing exercise. Lynnie
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)Hello Kim,
I read your post, and also Maz’s reply to you on osteopenia and connective tissue diseases, mentioning my own searching/finding in these areas. (It’s a shame we seem to have lost our past messages and cannot use the search feature to find them.) Below is a link that I strongly urge you to read. It is from Mildred Seelig, PhD’s work, and for me it has been an eye opener and stopped the increasing pain in my fascia and bones.
Since I have been correcting (since late 2006) an apparent severe magnesium deficiency and acidosis (even though I’ve had a very rigid healthy diet almost forever), a repeat bone scan in November 2009 showed significant improvement, with magnesium chloride therapy (MagChlor90) and making sure my urine/saliva pH testing stays in a healthy alkaline range. Testing these is sort of a barometer to tell me how my body is doing pH-wise. My PCP tells me to keep on doing what I’m doing.
The importance of magnesium deficiency has not just been researched by her, but by many and I’ve found many papers on this. Am pasting a link and an excerpt from the book about osteopenia, but urge you to click on the link and to begin reading from the top.
[Note: I’m very disappointed… apparently links cannot be made active here in our posts. Hope you can copy/paste the link below into your browser.]
The following is an example of how if magnesium deficiency is present, calcium and vitamin D can become very problematic.
http://www.mgwater.com/Seelig/Magnesium-Deficiency-in-the-Pathogenesis-of-Disease/chapter14.shtml
14.3. Calcemic Therapy for OsteopeniasHope this topic will be helpful to you.
AFI read your post, and also Maz’s reply to you on osteopenia and connective tissue diseases, mentioning my own searching/finding in these areas. (It’s a shame we seem to have lost our past messages and cannot use the search feature to
[Note: I’m very disappointed… apparently links cannot be made active here in our posts. Hope you can copy/paste the link below into your browser.]AF – may we ask for your patience. There are some issues which need fixing and those you mention are among them. It has been a mammoth task moving over 5000 topics and around 50,000 posts (we didnt want to lose these) and lots of technical issues have arisen because of this. The techs are dealing with these on a rolling basis. We hope to have plenty of usability in this Forum over time. Thanks. Lynnie
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)Kim,
Welcome to Road Back. I’ve been an athlete for the last 20 years, and was surprised to find out that I had slight osteopenia as well, when I had a bone density scan 4 months ago. I was diagnosed with Scleroderma in August 2008, and thought that my autoimmunity may have contributed to the bone loss. After a lot of research, as well as talking with my doctors, I think that I better understand how this happened, and what I can do to prevent it from continuing. First, exercises like running (especially long distance running) can really deplete your adrenals, and lead to hormone deficiencies, which contribute to bone loss. (particularily in women, who oftentimes have disrupted/irregular menstrual cycles with high intensity, prolonged aerobic exercise) Second, pounding exercises aren’t the most effective way to build up bone density–WEIGHT BEARING exercise, with large muscle groups is the best way to achieve that–which is why as we age, it’s important to incorporate weight training and/or stabilization exercises involving large muscle groups. (ie. lunges, squats, planks, etc) Third, many people with chronic illnesses have deficiencies in Calcium, Magnesium, Zinc… Supplementation of these, as well as making sure to get these vitamin sources are strongly encouraged. (no, that doesn’t mean you have to drink milk–broccoli has more calcium in it than milk does)
AF is right, paying attention to your diet, and trying to stay as alkaline as possible is another important factor for anyone, to prevent further damage to our bodies, sick or not. In my case, knowing the right combinations of food to eat to keep that balance has been very helpful to not only make me stronger, but recover faster, get off of GERD meds for a year now ( 😀 ), and enjoy overall better health, energy and mental focus.
Maria
I too have osteopenia after just a couple of years of RA. I was only on AP/MP when it happened, so it is not due to steroids or traditional meds. I was extremely low in D, however, and I was also extremely sedentary due to pain. The doctor that was following me when it was discovered said she feels it is due to inflammation. I was very anemic at the time. Anemia is essentially inflamed bone marrow. Obviously that is not good for bones. I have been on mino and also traditional meds this entire year, and I have been supplementing with vitamin D, calcium, magnesium, etc. I have also been much, much more active with some weight baring activities, too. I am hoping it has improved but am not sure when they will test it again. My D level was tested recently and it was 50 compared to 17 when the bone loss was happening.
My mother has had osteopenia for quite a while. She was also very low in D. She took D and calcium, but had to stop the calcium due to gall stones. She kept the D. After a few years she was recently tested again, and the osteopenia is completely reversed. She did not exercise and her overall health is so-so (heavy smoker). THAT is pretty amazing. Her doctor thinks it was strictly the low D levels. It give me hope, too.
I just wanted to let everyone know my good news. Today I had my yearly dreaded bone density test and to my astonishment I have gone from being osteoporotic to osteopenia. Great news for me and a big thankyou to AF who put me onto Magnesium, I have also gone back to my weight training 3 days a week. Its only a small increase but it means so much!.
………..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.Great news Annie! 😀 Lynnie
P.S. You might also want to talk to Dr D/LW about going onto Osteopatite (practitioner only calcium with boron and D3). My D levels have risen markedly on just 1/4 tab per day. They put me onto that.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)@Rockin Annie wrote:
I just wanted to let everyone know my good news. Today I had my yearly dreaded bone density test and to my astonishment I have gone from being osteoporotic to osteopenia. Great news for me and a big thankyou to AF who put me onto Magnesium, I have also gone back to my weight training 3 days a week. Its only a small increase but it means so much!.
………..Annie
OK, Annie, now you’re my new hero! 😀 That is great news.
Take care….kim
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