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Cheryl,
What I am interested to know is while people on AP, they still can develop digital ulcers?
Scary
:sick:
Insurance wouldn't pay for my husband's Viagra but we would have paid out of pocket if it had worked. Unfortunately, it gave him bad back pain. Would your primary be willing to give you a sample just to see if it might work? If the Viagra works, look into Cialis as it works for three days unlike the 4 hour (?) window period of Viagra. Luckily, my husband's fingers aren't as bad this year as they were last. The doctors at the wound center didn't know what to do with him.
Hopefully, you'll be able to get Viagra and Resvatio and now that we're heading into Spring that should help some also.
Hi –
I've had the worst ulcers this year and last – the whole time I've been on AP. I think that there are some of us with damage from scleroderma due to the fact that we had the disease for awhile, possibly on other treatments before knowing anything about AP. My fingers continued to stiffen and curl after I started AP. I am considering the IV AP, but would prefer not to have to go to Iowa or California for treatment.
I've just head about Manuka Honey, an ancient remedy for healing ulcers and burns:
http://www.medicalnewstoday.com/articles/86527.php
I'm going to order it – I have nothing to lose at this point!
I am considering the IV AP, but would prefer not to have to go to Iowa or California for treatment.
Margaret,
We live in PA, and were considering going to Iowa for the IVs. The trip was huge and daunting – I stumbled on info regarding ACAM – American College for the Advancement of Medicine – you will find docs from all over who practice “integrative medicine” – thinking outside the box, and a lot of them do these types of treatments – unconventional according to the mainstream! I spoke with an office assistant of a doc in either N. Carolina or S. Carol. (whose office did treat with abx – IV and oral) and she said that chances are if a doc was listed on the ACAM site, that they did IVs. You may want to check to see if someone in your area or at least closer than Iowa would work. Good Luck!
Margaret,
A friend's daughter from a local support group with Lyme just told me about this product, the EPRT, a type of TENS unit. She says that she held off buying the machine but her daughter has seen some amazing results. Supposedly, other patients from her doctor's office have seen similar results. The second site lists an article about wound care and this system. I can't promise that it does what it says but you can look into it. I'm considering it for my husband but after two and a half years of him being ill we no longer rush into anything. We'll see if the positive reviews continue from the people at the support group.
http://www.eprttechnologies.com/
http://www.thrisoint.com/articles/24_6_1202-1209Boks_paper.pdf
Go to http://www.hyperhidrosis-usa.com/raynauds This guy is in San Antonio and did this surgery on me. I still get ulcers but the pain is much less. I was about to lose a finger when he operated on me. The operation was a piece of cake. I also use the nitrobid. Good stuff.
Blessings!
Hi – How do you apply the NitroBid? I understand that it may be too intense to go right on the ulcer. Mine are on the middle joints of both middle fingers. I've been bandaging them, and would need to continue to do this, at least during the day.
I was approved for revatio (viagra) but am afraid to take it. Speciality pharmacist told me about the side affects: headache, nose bleeds, dizziness, dtomach aches, but it can cause vision problems including possible blindness!
Also, I'm already on Traaclear for pulmonary hypertension and there are no studies on patients who take both traaclear and ravatio. These ulcers are a challenge, but blindness would be a nightmare!
Thanks,
Margaret
consider laser light therapy – safe 5 min. treatments/FDA approved & insurance approved–for open wounds, pain & inflammation.
Used & recommended especially for open wounds by my Occup Therapist (Verdugo Hospital in La Canada/So. Cal. A former patient donated equip. but my therapist does not know who else has this equip. Dr. Gitlin in Huntington Beach uses it also
but I have no further referrals.I plan on trying it in near future for swollen hand.
Hi Richie,
I take a tremendous amount of medication. Don't think one is specifically a calcium channel blocker. What would brand name be?
Traclear is supposed to help with the ulcers, but hasn't helped one bit. I've started using the nitrobid paste. My insurance approved, and I was sent a bottle of revatio from Acredo (speciality pharmacy) but I'm hesitant to take it because of all the side affects. I have more than enough challenges with scleroderma. My fingers and now three ulcers and a fourth on my ankle continue to be a wreck.
Thanks,
Margaret
Hi MArgaret,
Just saw your message. I am new to this BB, anyways I have scleroderma as wee. I have had issues with ulcers on my knuckles. Two things seem to have helped me. First seeing a wound sugeon, they use special dressing to help cover the ulcer and also in healing. Alevynn and duoderm were 2 products.
Second is taking something for Raynauds, that is the key, to keep circulation going.. I hope this helps.nmb
I have been told that penicillin based antibiotics should not be taken with the cycline type antibiotics and interfer with each other. I believe the cycline (minocycline etc.) have to do with the ability of the bacteria to reproduce while the pencillin destroys. I am new to the AP but would advice you to do a search on the 2 types of antibiotics and check to see if this is true. Good luck.
Hi Dee
You are correct –minocycline and penicillin family meds are generally not taken together due to the fact that the tetracycline for some reason cancels out the effectiveness of the penicillin type drug in some cases–To Margaret –a calcium channel blocker aids in circulation –tracleer really isnt for that –I had bad Raynauds and my internist gave me a calcium channel blocker which helped tremendously –name of adalat xr —ulcers come from the Raynauds effect of damaging small blood vessels which impair circulation needed for healing —
Richie
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