Home Forums General Discussion Would like to hear from all Dermatomyositis? patients.

This topic contains 10 replies, has 2 voices, and was last updated by  Maz 3 years ago.

Viewing 11 posts - 1 through 11 (of 11 total)
  • Author
    Posts
  • #308260
    Anonymous
    Participant

    ….your successes, failures, length of time; any and everything would be appreciated. Thanks

    #372014
    Maz
    Keymaster

    @daileyaidan wrote:

    ….your successes, failures, length of time; any and everything would be appreciated. Thanks

    Hi Dailyaidan,

    Just thought I’d bump this up for you so that other dermatomyositis patients will hopefully see it to respond.

    If not, just ran a search on dermatomyositis on the forum and it pulled up all past posts with this key word in it. Might take some reading on your part to wade through these past posts, but once you have posted on the open forum a total of 3 times, you should be able to click on any user ID and can select the option to PM (private message) any poster. Most people don’t mind when others PM them, because they don’t necessarily check in to the forum on a regular basis, so should receive an automated message to alert them that a PM has been sent from another registered user.

    Hope this helps in your search and also hope you received the email sent to you with the additional doctor names you requested.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #372015
    Anonymous
    Participant

    Hi dailyaidan: Do you have Dermatomyositis? I hope you are well. This forum has been wonderful for me.

    I was diagnosed in February so this is really new for me. So far things have gone from extremely scary to extremely hopeful. When this all started I was devastated. Was already on Prednisone for 4 or 5 months and having terrible rashes – some weakness but couldn’t tell if it was prednisone or the disease. Going through all the cancer screenings was an ordeal and – although I didn’t really believe I had cancer – I was very freaked out by the looming threat of it all.

    The worst point was in April when I really started to feel weakness that frightened me. It was very different from the vague weakness I was already feeling. I was getting the tiredness from just writing out my bills… typing on the computer! And then hanging clothes in the closet – and then doing my hair. It lasted for about three weeks or more. It was weird because it came on about one to three weeks after I started on doxycycline. And then I started taking neprinol – systemic enzymes – as well- plus a whole bunch of supplements on top of the doxy and prednisone which I was trying to taper down to 9 mgs. I’m not sure what it was – but after about two weeks that weird scary weakness went away. My muscle enzymes also came down (they were elevated but not extremely so). Since then, my muscles seem to gradually be improving. I have not had a real scary episode again, thank GOD! The rash persists and at times is worse than others. I went on Plaquenil and I think I am beginning to see some very modest results. The specialist in Philly tells me I have the form of dermatomyositis that does not include muscle weakness. Let’s hope that is true and continues to be so.

    Now that summer is here I am learning how much the sun really aggravates my rash. It really stinks but it’s a small price to pay and will take it any day rather than have muscle involvement. I have lost some hair – and I have scalp itchiness and numbness that drives me CRAZY! There was a period there I thought I might have ovarian cancer – but since have found out my levels are normal.

    What else can I tell you? I’m not sure. IF you have questions, feel free to ask.

    #372016
    Anonymous
    Participant

    Oh – and one more thing. I have found a doctor in Philly who is willing to include me in a cannabis trial in September if I am not better, Interesting……

    #372017
    Maz
    Keymaster

    Hi Lindilu and Dailyaidan,

    You both might also like to read Karen Neidbalski’s DM remission story here in the Fall 2008 eBulletin (scroll to bottom of link) to find her remission corner story:

    http://www.roadback.org/emailblasts/ebulletin_fall08.html

    Lindilu wrote:

    The worst point was in April when I really started to feel weakness that frightened me. It was very different from the vague weakness I was already feeling. I was getting the tiredness from just writing out my bills… typing on the computer! And then hanging clothes in the closet – and then doing my hair. It lasted for about three weeks or more. It was weird because it came on about one to three weeks after I started on doxycycline.

    Sounds like classic herxing! This is a good thing, as horrible as it can feel, because it means the bugs are being targeted by the doxy and they are doing their job. 🙂 Labs, like muscle enzymes, also herx…when it passes, the symptoms regress and labs typically start to slowly normalize (though one may come before the other).

    Dailyaidan, hope you don’t miss Lindilu’s great post above…just made me think of Nancy’s story and that you both might like to see her pic and read her story.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #372018
    Anonymous
    Participant

    Hi all. I’ve been gone for awhile…feeling pretty good for the most part. I’ve been able to come down to three milligrams of prednisone. While my rash isn’t gone, it is bearable. I was doing so well I stopped the doxy about two months ago and continued to be fine. My muscles seemed to be back to normal an all was well. Then about.two weeks ago I was dropping to 2 1/2 Mgs of prednisone an my skin began to get worse. So I decided to not take any chances and started doxy again. Also going through horrible PRe menopausal issues haven’t helped. So now ..as of today..I am experiencing some weakness and breathlessness that I had back last spring. Trying hard not to get scared but it is freaking me out. I’m hoping like last time it all gets better.

    #372019
    Maz
    Keymaster

    @lindilu wrote:

    Hi all. I’ve been gone for awhile…feeling pretty good for the most part. I’ve been able to come down to three milligrams of prednisone. While my rash isn’t gone, it is bearable. I was doing so well I stopped the doxy about two months ago and continued to be fine. My muscles seemed to be back to normal an all was well. Then about.two weeks ago I was dropping to 2 1/2 Mgs of prednisone an my skin began to get worse. So I decided to not take any chances and started doxy again. Also going through horrible PRe menopausal issues haven’t helped. So now ..as of today..I am experiencing some weakness and breathlessness that I had back last spring. Trying hard not to get scared but it is freaking me out. I’m hoping like last time it all gets better.

    Lindilu, is there a reason that you came off your AP? Most people remain on treatment for life, even a lower maintenance dose, just to maintain remission. Here’s to you regaining your lost ground soon! How do your labs look?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #372020
    Anonymous
    Participant

    hi maz. I guess I thought I was doing so well tjat i eould try going without it and see if it was making any difference. I was already taking Plaquenil and quinacrine and i haveI improved. I’m waiting for my labs to come back. Should be any day now. But in order for me to come off of the prednisone completely I guess I need to stay on doxy. Just hate taking so many pills.

    #372021
    Maz
    Keymaster

    @lindilu wrote:

    hi maz. I guess I thought I was doing so well tjat i eould try going without it and see if it was making any difference. I was already taking Plaquenil and quinacrine and i haveI improved. I’m waiting for my labs to come back. Should be any day now. But in order for me to come off of the prednisone completely I guess I need to stay on doxy. Just hate taking so many pills.

    I see…yes, understand how you feel. Thing is, while you still have symptoms and still on immunosuppressant therapy, it’s better to taper and get off the latter than to risk relapse and a resurgence of the underlying chronic infection(s). Dr. Brown kept his patients on treatment until all labs and symptoms had reverted to normal (and they were off all immunosuppressant drugs) for a good period of time. Most people, however, prefer to remain on therapy for life once a lasting remission is achieved, because it’s just not worth a return of the disease. It can sometimes be tricky to regain lost ground, but easy enough to dial the dose back up if on a low dose maintenance protocol. Doxy is probably the safer drug to be on, so I think if I was in the same boat, I’d get off the pred first, then taper off the quinacrine and plaquenil.

    Perimenopause is also a challenging time for women with rheumatic diseases, because fluctuations in hormones can discombobulate inflammatory pathways and compromise immune system functioning. This is the time of life when most rheumatics experience their first run-in with their disease (also post-partum when hormones crash).

    The thing about autoimmunity is that practitioners are learning that it’s often not just about treating the infectious causes (which absolutely do need addressing), but also bolstering immune function with an individualized diet (70% of immunity is in the gut), balancing hormones (thyroid, adrenals, ovarian), ensuring adequate detoxification, stress management, etc., etc. So, getting the playing field evened out again, so to speak, to enable us to keep the “animals” (pathogens) in their zoo cages. A predisposition to autoimmunity doesn’t just go away…it’s there, even when in remission, and re-infection and other stressors can cause a reactivation. This is why treatment is often for life. A positive way to look at it is that it’s better to be on a maintenance dose of doxy or mino for life than on the usual cocktail.

    I really hope you feel better soon, Lindilu, and best of luck getting off those last few mgs of pred. Interesting that all your meds are anti-protozoal/anti-parasitic ones (except for the pred, of course).

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #372022
    Anonymous
    Participant

    Thanks Maz. I guess I didn’t look at it that way but you make a good point. I have to remind myself sometimes that this may be here to stay. Its so frightening all of the terrible things this disease can bring on. My rashes are still there but not as bad. My hands look like hell. But the scalp tingling has diminished to the point where I only notice it a few times a day. I am taking neprinol because I’m deathly afraid of lung disease…but I have a lot of work to do on my diet. Its just all so exhausting and there are days I still can’t believe I’ve been diagnosed with this. Doxy was helpful in my initial decline of prednisone so I’m back on it and I’ll keep trying to come down. Thanks for being said helpful. You are a gem 🙂

    #372023
    Maz
    Keymaster

    @lindilu wrote:

    Thanks Maz. I guess I didn’t look at it that way but you make a good point. I have to remind myself sometimes that this may be here to stay. Its so frightening all of the terrible things this disease can bring on. My rashes are still there but not as bad. My hands look like hell. But the scalp tingling has diminished to the point where I only notice it a few times a day. I am taking neprinol because I’m deathly afraid of lung disease…but I have a lot of work to do on my diet. Its just all so exhausting and there are days I still can’t believe I’ve been diagnosed with this. Doxy was helpful in my initial decline of prednisone so I’m back on it and I’ll keep trying to come down. Thanks for being said helpful. You are a gem 🙂

    If it helps, at all, Lindilu, you’re not alone. I think every person here has experienced what you’re also feeling and have so honestly expressed above. The uplifting side of this treatment is that there is every hope of turning things around and the best way is to self-advocate and to remain a step ahead…there’s something very empowering about claiming directorship of one’s own life. 🙂

    In addition to Neprinol, have you also looked into the supplements NAC and ALA for your lungs? Anything that is antioxidative and promotes glutathione will help to keep your lungs clear. The lungs of healthy folks are full of glutathione, but when we become unwell, it’s depleted. There are a number of studies about the benefits of antioxidants and also NAC/glutathione for pulmonary diseases. Also, getting your gut in healthy shape should also go a long way to supporting skin healing.

    Stay in touch with us here when you can and hope you feel better soon!

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

Viewing 11 posts - 1 through 11 (of 11 total)

You must be logged in to reply to this topic.