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I will be seeing Dr. S very soon regarding dermatomyositis. I would really appreciate any feedback from patients with DM who have been treated by Dr. S. I am getting a little nervous and could use some encouragement. Not interested in hearing negative stories at this point because I am keeping a positive attitude, but positive outcome stories would be very helpful.
Thanks. 🙂
Dianne,
Unfortunately, dermatomyositis isn’t as common as some of the other autoimmune conditions, so you might not get too many responses. My husband did not treat with Dr. S so I can’t impart any experience regarding him but I can tell you that my husband has recovered from a very serious case of DM with pulmonary fibrosis and has been in remisison for several years now. It is possible to recover from this disease!
Thank you Parisa. I’m early in the disease.
How long did it take before your husband saw improvement? Did he just do oral antibiotics or did he also do IV?
Thanks again. It can be pretty lonely with a rare condition. I’m sure you’re more aware of that than I, though. 🙂
Dianne
When my husband first became sick, he saw an AP doctor who wanted him to go on Cytoxan and unfortunately did not start him on oral antibiotics. After about a year into the disease we put two and two together and figured out that he had Lyme disease. We saw a Lyme disease specialist and he started out on oral antibiotics. The oral antibiotics were not enough for him as his disease had spiraled to a point where he was just getting worse and worse (although the oral antibiotics did help to stop thep progression in his lungs). After about a year of orals, he switched to IV antibiotics and to IVIg. That was the winning combination for him and after several months his condition started to improve by leaps and bounds. It completely surprised the rheumatologist who had prescribed the IVIg and assured us it wouldn’t work without methotrexate or some other form of immune suppression. My husband had already tried Cytoxan with no results (he finally stopped refusing the Cytoxan as he was afraid of what was happening in his lungs) and prednisone which had given him some relief in the beginning of the disease (superman energy!) but later on lead to pneumonia, cataracts, osteopenia…..We always felt that if he had received oral antibiotics in the begining of the disease and not put on the steroids and immune suppressing drugs that his recovery might have been alot easier.
Eva, another DM sufferer, has done quite well with oral antibiotics and LDN (Low dose naltrexone) so IVs aren’t always necessary.
dianne2,
I have dermatomyositis now for 7 years and on the beginning I was on methrotrexate, Imuran, cytoxan, Enbrel, Remicade, plus Cellcept and Prednison. None of that helped.It caused a lot of lung problems and ostepinia. When my pulmonary doctor started me on Biaxin, (because of a sinus infection) I realized it was helping me so I thought out an AP doctor here in Texas. She has been helping me and occasionally changing my antibiotics.
When I started with DM I was so sick with my lung that they really didn’t give me a good chance of living long. I am at the present time on 100 mg Minocin MWF and also 300 mg of clindamycin Mon-through Sat. I also take NAC and Alpha Lipoic Acid which helped with the healing of my lung. I now have a normal pulmonary function test. It was a hard road to go, but you have to be your own investigator what medicine is good for you plus what supplements will help.
I have heard Dr. S is very good and maybe it will be the help you need to start your treatment with AP or even further it.
I am also taking low dose Naltrexon (LDN) and it has helped with the pain and even swelling. I sleep well all night. Some people have a hard time with LDN because it causes insomnia on the beginning and then sometimes vivid dreams; I did too but I stuck with it and it has really helped me. Several times I had to stop because of surgeries or dental procedures. I did lower it from 4.5 mg to 3 mg which seemed to help more and gave me a more restful night.
Yes, you may hear negative things from people but as long as you are willing to work on your health with a good doctor and friends you will get well. Are you seeing another doctor besides Dr. S? I don’t know how far he is away from where you live, my doctor lives about 125 miles from my home and at this time I see here about every three months. I see my pulmonary every six months, so I feel that I am in good hands.
Wishing you the best and let us know how things going after the IV.
EvaEva Holloway
Eva, actually Dr. S is 800 miles away. My PCP is willing to prescribe for me as Dr. S suggests, and I work for a clinic which is equipped to do IV antibiotic treatments and they are willing to do that for me according to a plan laid out by Dr. S.
There are a couple of doctors I know in the area that I am considering talking to about visiting with Dr. S in Iowa to train and offer the service here. It’s a long shot, but this country needs more AP doctors.
I’ve been taking 100 mg. Minocycline twice a day M, W and F since May. Other than some OTC anti inflammatories and the occasional Tramadol, that’s it. I’m hoping that works in my favor with knocking this thing out.
I absolutely refuse to turn off my immune system. I saw a rheumy once and he claimed there was nothing wrong with me. I did have a punch biopsy of a red bump on my finger, which the pathologist is sure is DM. That particular pathologist studied DM. I have since had some classic DM symptoms, after staring with way too much antibiotics (Mino 100 mg twice a day every day plus Flagyl every day (ugh).
I may have taken an extra mino capsule a few days ago, and now I have a couple of rashes on my leg which are similar to the rashes I had all over my body after the mino/flagyl fiasco. I hope the IV abx I will be doing in Iowa don’t cause a herx from hell.
My only other symptoms are painful neck muscles for the past two months and swollen, inflammed wrists and knuckles. The initial symtoms, red papules all over my hands and painful tender cuticles, have subsided greatly. I just realized that the red knuckles I had are looking normal again too. One knuckle in particular. Both my dermatologist, who diagnosed the dermatomyositis, and the rheumy who said I do not have dm showed me the same book with the same pic of a hand of someone with DM with severely red knuckles which looked just like mine, only worse. Also, I just remembered that I had swollen sinuses (swollen bags under my eyes, which I’ve never had before) for a few months which seem to have gotten back to normal. Oh, and brain fog and fatigue.
So that’s odd. My initial symptoms have greatly improved, but now I’m having the neck muscle pain and the joint inflammation in my hands which are completely new symptoms (well, I was having some joint inflammation, but not this bad and I just thought I had garden variety arthritis), but it has progressed way too fast and isn’t like arthritis in that it is sore to the touch at the joints, outwardly.
I’m leaving for Iowa a week from tomorrow. The Bible tells us to go to the elders of the church and have them annoint your head with oil when you’re sick. My church will be doing that for me Sunday.
dianne2
my hands are still having some problems on occasion, they used to be very red and swollen and the cuticles were raw, my fingernails even looked different. Now the swelling is gone, with some red knuckles sometimes. My wrists are okay now. After my last surgery in May (appendicitis) my left wrist started to hurt again, I think it had something to do with the surgery and the inflammation of the appendix. I do not take any pain medication, I do use some pain patches prescribed from the doctor, but I use them very seldom. I think I have used a total of 5 Tylenol after my last surgery, that’s been it.
Since you started in May with your antibiotics and now feel worse you may have a herx from the antibiotics fighting the bugs, That sometimes happens and even after the IV’s it may still hurt. AP is not a fast cure treatment, it will be awhile. At least you are getting treatment soon, as I said I took all the stuff that turned my immune system against me, so now it will take longer to get well. Make sure that you don’t get it in your lungs.
I also have issues with my neck and left arm sometimes, specially if the weather changes. I found a massage therapist that works with me to relax those muscles. I use Blue-Emu to rub into sore spots.
Glad you found a doctor that will do your IV’s when you need them.
We also have our Elders annointe anyone that needs it for healing. It is a blessing.
EvaEva Holloway
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