Home Forums General Discussion RA and Connective Tissue problems(Dermatomyositis)

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  • #301360
    Eva Holloway
    Participant

    For about three months now I have notice that I have very little upper body strength. I have been exercising three times a week on a friends equipment and doing other exercises at home but I can not get any stronger. I am using a cane to get around. I had to order a wheelchair for longer trips.

    I have been on Biaxin (500 mgx 2 day) since January and on Nizoral (200mg x1 day)since March. I am doing a lot better with my RA, but it doesn't seem to touch the connective tissue problem (DM).

    Anyone has Dermatomyositis and what are they doing for it?  😕

     

    Thank you,

    Eva

    Eva Holloway

    #321031
    Maz
    Keymaster

    Hi Eva,

    I was recently speaking with Karen N., who had both Lupus and Dermatomyositis. She has been in remission for 5 years. Her updated story will be in the upcoming eBulletin. However, you can read her testimonial here:

    https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/267.html

     [/i]

    Here are some further discussion threads on a number of pages that mention dermatomyositis that you may find interesting to read through. Some threads may have more info than others, but you should be able to figure out who has dermatomyositis from these discussions so you can contact them in private messages.

    http://www.rbfbb.org/search.php?s=1&q=dermatomyositis

    If you'd like to sign up for the quarterly eBulletin, just go to the main http://www.roadback.org webpage and you will see a subscription box on the right hand side to add your email address. When the eBulletin is published, you should then receive your copy by email.

    So sorry to hear you are struggling. Biaxin also helped my RA when I was on it in the first year, but it might be worth discussing adding in a second antibiotic with your physician, like minocycline to speed things along. As you will read in Karen N's story, she also found diet/juicing to be very helpful.

    Wishing you all the best in your searches for answers.

    Peace, Maz

     

    #321032
    Eva Holloway
    Participant

    My doctor gove me mino but I take it on the weekends, one tablet a day. She never told me how to take my meds, Nizoral is an antifungal antibiotic and I take that daily right now with the Biaxin.

    Thank you for answering my e-mail so prompt. 😀

     

    Eva

     

     

    Eva Holloway

    #321033
    Maz
    Keymaster

    Hi Eva,

    Interesting…I haven't heard of the 100mg once a day on weekends only minocycline protocol. A common protocol, when folk are doing pulsed dosing, is to do 100mg once or twice daily on Mon, Wed and Fri…or alternate day dosing. This promotes tolerable herxing levels while keep the rising and falling blood serum levels of antibiotic a little more constant.

    Also, the biaxin dose you are taking is quite high. This was the dose I took for Lyme, which calls for quite heavy doses/combos.

    This is just my fellow patient speculation, but you could be experiencing hypersensitivity issues. You can read about this here:

    https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210

    Also, are you taking a good probiotic for gut health while on antibiotics? This is really important when on AP to help avoid an overgrowth of candida (yeast/fungus issues).

    Would you like a listing of AP docs? If so, let me know and I will send you a private message with physician contact information.

    Peace, Maz

    #321034
    Eva Holloway
    Participant

    Hi Maz,

     

    I have an AP doctor in Lufkin, her name is DR RK, her story is on the RB, her mom had the arthritis and you probably read her story too.

    I was put on Biaxin twice a day because I started out with the most severe sinus infection, caused by: Enbrel, Cellcept and Prednison. I had this infection for  6 months and was very ill by the time I went to Dr. K. Not only this I had a fungal infection in my sinus caveties I also had it on my hands from using my kleenex and getting the stuff on my hands, and I am still wotking on getting rid of this.

    By the way besides the Dermatomyositis I have severe RA now for three years.  Before that my RA was mild and I handled it was regular antibiotics from my Allergist wo took care of my regular sinus problems, bronchitis and pneumonia. I have had sinus problems since 1970 when I moved to Colorado Springs, CO. After I moved to Houston in 1979 I still had the same problems, but then I also added vasomotor allergies to my problem, caused by pollution in and around Houston from the refineries.

    Should I talk to Dr. K. about how to pulse the three antibiotics I take. 😕

    Tank you for your help.

    Eva

     
    edited to remove doctor's full name as per RBF policy

    Eva Holloway

    #321035
    Parisa
    Participant

    Hi Eva,

    It sounds like you are in good hands with Dr. K.  My husband has dermatomyositis and the ride has been very bumpy.  His dermatomyositis is caused by Lyme and babesiosis so I think it would be a good idea to at least get tested for Lyme disease.  I wish I could separate out whether it is the Lyme or the babesia which is causing his myositis but it isn't that clear in my mind as both diseases cause  muscle issues. 

    Liesl (?) used to post about her success with doxycycline I believe.  Doxy wasn't enough for my husband.  He has been on quite an extensive list of oral and IV antibiotics and IVIG.  The IVIG and IV antibiotics are what have started to really turn things around for him.  IVIG is expensive and hard to get authorized so I hesitate to mention it at times.  On the other hand, when things get really bad it can also make the difference between using a powered wheelchair and walking so people should be aware of it as an option if it needs to be pursued.

     

    In general for myositis, you need a muscle biopsy and/or EMG done to show the myositis.  If these tests show myositis, the tricky part is getting the IVIG without having to do high dose prednisone or cytoxan.  My husband had done the prednisone and cytoxan previously so we had already hopped through that nasty hurdle.  However, I think there are creative ways to get past that step such as someone wanting to preserve their fertility, being immune compromised and unable to tolerate immune suppression, etc.

    It sounds like you maybe you need to add in another antibiotic.  Flagyl (IV but oral works well too) was a good antibiotic for him.

    Keep us posted and let us know how you are doing.

    Parisa

    #321036
    Maz
    Keymaster

    [user=236]Eva Holloway[/user] wrote:

    Should I talk to Dr. K. about how to pulse the three antibiotics I take. 😕

     

    Hi Eva,

    You could talk with Dr K about this, but she's one of the best AP docs down south, so you're in good hands with her. 😉 It sounds like you haven't been on AP for very long? She may be starting you out low and slow to help you to avoid a big herx. So next time she sees you, she may even change your minocycline dose and schedule. The early days on AP can be rough with some worsening, so keeping your herxing within tolerable limits may be her prime goal for now and possibly to gauge your sensitivity reactions with just the weekend dosing. Wouldn't hurt to ask her about her rationale, which I'm sure will make good sense, just so you can be an active partner in the decisions you'll be making with her about your protocol as it evolves over time.

    Nasal fungal infections were mentioned here recently on the BB when Lynne_G posted an interesting news article about the topic and the use of Manuka honey to help clear these types of infections. If you type in manuka honey in the search box above, you should find the discussion thread quite easily.

    Peace, Maz

    #321037
    Eva Holloway
    Participant

    Maz,

    I am going to invest in the manuka honey, but I am not sure about the nasel rinse with it, I tried the nepi pot and feel like I am drowning. I could always make a drink with warm water, lemon and peppers. Sounds good. Maybe that will help.

    Anytrhing is better than nothing.

    I bought some wrist weights so I can do my exercise better. Just wearing the weights for a short period each day may help with the muscle strengthening?:roll-laugh:

     

    Thanks,

    Eva

    Eva Holloway

    #321038
    Eva Holloway
    Participant

    My rheumy asked me to have the EMG daone, but I had such a bad experience with a similar test that I didn't get it done. I have been through Prednison and cytoxan and that actually failed with me. I am doing better with the AP but still very weak. I have had e-mail conversations with Liesl and I am familiar with her story. She and Cathy T. and Teresa M. have so much encourage me. It helps to have people that have been through this.

    I am going to try the manuka honey some else has been talking about. I think a lot of my problems has also been from the sinus infection that has been hanging around for eons.

    I may think about the EMG and ask Dr. K about it.

    Thank you for your help, 😀

    Eva

     

     

    Eva Holloway

    #321039
    Maz
    Keymaster

    Hi Eva,

    Good luck with the manuka honey. I hope it works for you and please do come back and let us know how you do with it.

    Sounds like a very good idea to ask Dr K about whether it's necessary to have the EMG done. She may have an entirely different perspective, seeing this type as test as possibly just being useful to get a baseline to watch your improvements as you progress on AP. Your rheumy may be wanting to get a baseline for different reasons…to get a baseline in order to drug manage you and watch for disease progression. Either way, it may be useful as a baseline, but the reasons may be entirely different.

    It's great you're getting such great support from others with dermatomyositis, Eva. It really does help to know others have gone before and done well on AP. Keeps the spirits up when just starting out on our road back. 😀 

    Hang in there!

    Peace, Maz

    #321040
    Eva Holloway
    Participant

    Seen the pulmonary doctor today and he checked my lungs and told me that they sounded the best in the last three years and I dont have to come back till next year in May. Great for the lungs. :blush: :roll-laugh:

    Had the LEAP test done today to find out what I am allergic too. I do know I have several allergies but Dr. K. thinks I need to know all of it. 😀 She put me already on gluten-free food and I have been sticken with it.

    Now to find out about the dermatomyositis and how to get that out of my system, or at least get the inflamation out of my hands and go into remission.

    Bless you all,

    Eva

     

    Eva Holloway

    #321041
    lynnie_sydney
    Participant

    Eva – I just came upon this recent AP testimonial on the http://www.rheumatic.org site by a dermatomyositis patient (medical histories section). There are also several other dermatomyositis stories on that same page, all pretty recent ones. Lynnie

    http://www.rheumatic.org/tracy.htm

    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)

    #321042
    Kim
    Participant

    [user=236]Eva Holloway[/user] wrote:

    I am going to invest in the manuka honey, but I am not sure about the nasel rinse with it, I tried the nepi pot and feel like I am drowning. I could always make a drink with warm water, lemon and peppers. Sounds good. Maybe that will help.

    Hey Eva,  You said you feel like you're drowning with the Neti pot.  Rather than the neti pot, I use the squeeze bottle you can get in the drug store for sinus rinse.  I fill it with the premixed packets and warm water and use it in the shower.  I bend over and squirt half the bottle in one nostril then the other half in the other nostril.  The steam from the shower already has your sinuses loosened up and I've found this way to be less messy.  If I feel the slightest hint of a cold, I use it and never get the cold.  I bought one for my husband and he's hooked now too.

    #321043
    Eva Holloway
    Participant

    :blush: well I got my manuka honey, hope it will help. It tasts nice so I am going to use it  every day hoping it will help.

    :X The weather here in Houston has turned cold and I can really tell it. I went to Las Vegas last week and used the jaccuzi at my son's house and it sure did mess up my skin. It is getting better now, but my skin felt like it was burning for several days.

    I have an appointment with my doctor on Monday and will bring this up. I am so glad there are great people out, there like all of you that help other people.

    Thank you,

    Eva:blush:

    Eva Holloway

    #321044
    Maz
    Keymaster

    [user=236]Eva Holloway[/user] wrote:

    :blush: well I got my manuka honey, hope it will help. It tasts nice so I am going to use it  every day hoping it will help.

     

    Hi Eva,

    Please let us know how you get on with the manuka honey! Hope it works and does the trick for you!

    Did you catch the Road Back's Fall eBulletin? If not, here is a link where you can read about Karen N. and her remission update from Lupus and Dermatomyositis. It's right at the end in the Remission Corner section.

    https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

    Hope your burning skin feels better soon!

    Peace, Maz

Viewing 15 posts - 1 through 15 (of 24 total)

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