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Hi everyone,
I was a runner before scleroderma, and I ran marathons. A few months before I was diagnosed I stopped running. It was just to much. Since being diagnosed I have struggled to run and its been an uphill battle.
Yesterday however I was able to run 5 miles! :DTake that scleroderma! I feel great for having accomplished that. I believe that the minocin is starting to work.:D
I just wanted to share to give hope to the newcomers…..
Take good care of yourselves.
Jennifer
That is so awesome Jennifer! Congratulations! You have no idea how inspirational this post is. I am a runner as well. I do half-marathons. My goal was to do a full marathon when I retired from soccer (I was still playing last summer). My rheumatologist is determined to keep me running. She wants me to send her a picture of me running. In fact, she even got me a referral to get orthotics.
Thank you for sharing your post with us! It is so nice to see you doing so well!
Congratulations! I love reading post like ths! I just got my first round of IVs in the beginning of January and just started talking my Mino this week so hopefully (eventually) I iwll be sharing a post like this!!
Congrats from Florida too! I have always been active and it was hard to not feel so bad for almost a year that I couldn't work out but I too can say AP works cause I have been back to exercising for about 4 weeks now and am beginning to feel good again. Isn't it just the best! I realized I was taking just walking from my car into work for granted and now I try to stop and enjoy the moment. I can walk pain free again (won't be running but that is ok, I'll leave that to you and Mumof3)!
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
Jennifer,
I'm so jealous! Congratulation! Now don't be complaining about feeling sore or achilles tendinitis….
I can now run (well, it might look like I'm running) about 100 yds, but I'm getting there.
Also, I'm only telling a few select friends that I'm secretly training for the Escape From Alcatraz (oops, I mean Scleroderma) Triathlon. Maybe we can train together.
Good going again!
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"Jennifer,
I don't know if you are aware that the Arthritis Foundation sponsors people with AI diseases to run a marathon. You are assigned a personal trainer, and trained for a specific marathon at a specific date and location. All expenses paid, even the trainer. Some of the marathons are overseas. You sound like a perfect candidate for that. I know that the AF gets a bad rap sometimes because of its' support for biologics, and you might have to wear a t-shirt with some kind of ad for Enbrel or some other biologic, I don't know. It's more likely that the shirt would have some logo for the Arthritis Foundation. But I wanted you to be aware of the program since you used to run marathons. All the information is on their official website. They also have scholarship programs.
Randy,
I used to run track as a teenager, low hurdles and sprints. Now, not only do I do a poor imitation of running, my walk could be entered into the 'Ministry of Funny Walks'. I'm going to start back with my warm water therapy next week. I did it 6 yrs ago and it helped tremendously, along with acupuncture. At that time I, too was only able to walk about 100-200 yds. That's pretty much where I'm at now again. Even tho I ran track, or probably because I did, I do not like to run. But I love to walk and hike. You and I need to have a change of attitude; our ambulation is not silly, it's the new smexy. That's right, we're bringing smexy back!:cool::cool::cool:
Jennifer,
Welcome back to your life!!!!
When my RA struck, it hit every joint at once and within 5 mths, I had to quit my job and was housebound. After starting AP and working with a medical doctor to detoxify and build up my body with diet and supplementation, it took 3 mths to return to work and 6 mths to be riding my horses again.
Today, I barely remember I have RA. Very minor joint pain on occasion to remind me I am still a work in progress.
Linda,
I was happy to read about the AF sponsoring runners until you said the runners might have to wear t-shirts with advertising for the drug companies. Then it smelled again of what I have always heard about these foundations. That they are actually fund raisers for the drug companies.
I used to suffer from asthma and the drugs the allergist gave me did nothing to help. One day I wandered into an herb shop run by a husband and wife team who were both certified herbalists. He sold me a product called ALJ which supports the bronchial tubes. I ran it by my GP before taking it. 3 days later I could breathe again deeply. I took that herb for 2 yrs. I was afraid to quit. That was 8 yrs ago.
I haven't taken the ALJ for 6 yrs but my breathing remains good and this summer I was tested for asthma and do not have it.
Of course, I wrote the Allergy and Asthma Association thinking this was great news to share. They never acknowledged me and I wrote several times. I take it they aren't interested in helping us, just selling us drugs.
I haven't cared much for medical associations since.
[user=86]Susan Lyme/RA[/user] wrote:
Then it smelled again of what I have always heard about these foundations. That they are actually fund raisers for the drug companies.
Hi Susan,
I did a quick search for minocycline on the Arthritis Foundation's website, and they mention it a few times. They seem to share the opinion of the ACR, that it is a safe and effective DMARD. They do state Dr. Brown was wrong in why it works, and it works only because of the immune-modulating effects. I don't know how they can be so matter-of-fact, since definitive proof does not exist either way. They also had an interesting article about how infection might cause RA and said people who grow up in too clean of an envrionment are at higher risk for RA because their immune systems are “bored”. Anyway, it was an interesting read:
http://www.arthritis.org/can-germs-prevent-arthritis.php
Yes, drug companies do sponsor the Arthritis Foundation, as do makers of various supplements and others. Maybe I am naive, but I think their intentions are good, and just like RB, they need money to survive. At least they recognize AP as an effective treatment, which is more than you will get out of most rheumies.
Glad to hear you are feeling good !
Joe
Hello all you runners, walkers, hikers, and those who are on their way.
Just to add my small testimonial (to give hope to the newcomers) that 10 months after being unable to run, and 8 months on AP I am now jogging again too. Wouldn't quite call it running yet, but I am more than happy being able to jog with no pain, as that also includes dancing round the kitchen with 2 dogs and a budgie ! 😉
(I'll probably skip the marathons & triathlons though !)
Take care,
Katie 😀
[user=20]Joe M[/user] wrote:
They seem to share the opinion of the ACR, that it is a safe and effective DMARD. They do state Dr. Brown was wrong in why it works, and it works only because of the immune-modulating effects. I don't know how they can be so matter-of-fact, since definitive proof does not exist either way.
JoeI'm really bothered by this. If it “modulates the immune system,” and they are not sure exactly how, then why on earth is it okay for dermatologists to prescribe it as a treatment for acne without revealing that, along with its implications, to the patients? The fact is, if it is truly “modulating the immune system,” then patients should know about that when they take it. Most acne patients think mino (or other ABXs that they are given) kills bacteria in the skin, and that is the reason they take it. If it doesn't really do this, or it does something else, then that should be clear to patients. They should know that they are influencing their immune system, perhaps suppressing it.
It seems like the dermatology field of medicine missed the memo about how their drug works.
edited to add! :roll-laugh:
(Sorry to rant on your super positive thread, Jennifer! I'm really impressed that you are running again. Good for you! I hope you enjoy every minute of it!)I completely agree Tiff. Although most teens with bad acne probably would modify the heck out their immune systems to get rid of the acne if given the choice.
http://dermatology.about.com/cs/antibiotics/a/acneabx.htm
It seems there is more than just killing bacteria in getting rid of acne…
Joe,
Thanks for the well wishes.
There is a book titled “The Truth about Drug Companies” It is written by Marcia Angell MD. She is the former editor in chief for The New England Journal of Medicine.
She exposes the scams these companies commit every day, including the fact they spend precious little of their resources on R&D (research & development) but a gross majority on marketing.
They are far from poor and the dollars you donate to the fund associations are not all devoted to research and certainly not one dime on research that will not make enormous profitable returns to the drug companies.
If you take the time to read this book, you will walk away disgusted and you will understand much better why an inexpensive treatment like minocycline is pooh-poohed by the doctors.
http://www.amazon.com/gp/reader/0375760946/ref=sib_dp_pop_fc?ie=UTF8&p=S001#reader-link
Susan
Hi Susan,
Nobody said the drug companies are perfect. Dr. Angell resigned from the NEJM over a dispute about one of their sponsorships. One could say she has an axe to grind. She is also a big opponent of alternative medicine. Much of what is discussed on this website would certainly be considered alternative (not AP, which is proven).
If the Arthritis Foundation went away all those dollars would not magically flow into more useful research, or what we consider to be more useful research. I think on balance they do more good than bad. I prefer to believe their intentions are good, but I realize not everyone agrees.
Joe
Hi
Great news Jennifer –I note with interest the doseage of Minocin- the fact you are taking Norvasc for the Raynauds –the generic of zestril as an ACE inhibitor and nexium for the reflux –I still take virtually the same meds and now I am completely in remission and I have no doubt you will be there also –Best
richie
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