New To this site – Connective tissue disease & minocycline

[Jo2626]

Hello,

Joined the site today.

In January 2012 my husband and I developed what we thought was a bad stomach virus. His went away after 48 hours but mine manifested into much more- I developed joint pain, muscle weakness, livedo ( blotchy skin), chest pain, neuropathy, ear popping, and a feeling like something was constantly stuck in my throat.

I went to several doctors and finally was tested for antibodies – I tested highly positive for centromere b and aps antibodies. Also very high CRP level. On May 13 2012 I was diagnoses with connective tissue disease.

I asked my Rheumy if we could try minocycline for 2 months. I was on it 2 months to the day but did not notice any changes bad or good. Now she wants me on plaquenil.

My question – has anyone been cured of limited scleroderma ( what she thinks it’s evolving into) ?
Should I be on mino longer? Does plaquenil help?
Also, I live in upstate Ny – any good docs around?

I’m only 24 I hope my life isn’t goin to spiral downhill further 🙁

[Cheryl F]

Jo:

Welcome to the RBF Discussion Forum. I am so glad you found us.

I want to answer your questions first.

You wrote: “has anyone been cured of limited scleroderma?”
I would NEVER use the term cure, but I will say that I know MANY people with both Limited and Diffuse Scleroderma who have experienced full and long term remission from antibiotic therapy. My daughter was diagnosed with Limited Systemic Scleroderma in 2006, she was 16 at the time. Her condition included severe Raynauds, extreme fatigue, heart palpatations, and shortness of breath which was subsequently confirmed as lung involvement with her DLCO of 61%.

Here is a link to her RBF testimonial:

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/489.html

Here is a link to an article that was in the September 2009 Issue of “Scleroderma Voice” the magazine of the Sclerdoerma Foundation:

http://www.scleroderma.org/pdf/News/2009/swimming9-09.pdf

As is mentioned in the Scleroderma Voice article, she not only fully recovered, she regained her lung function and went on to compete in and win a national title in NCAA Swimming competition. She is still doing well, she has since concluded her swimming career and has started running for fitness, last spring she did a 1/2 marathon, she is fully recovered.

“Should I be on mino longer?”
YES DEFINITELY!

Does plaquenil help?
Possibly, but it would not be the first thing I would go to.

She is very near your current age, she would be happy to speak with you if that would be of any help or support. You can message her on FaceBook if you like, or let me know and I can send you a personal message on this system with her personal email address. The address shown on the testimonial is now not functional as she graduated from that school over a year ago.

Good luck!

Cheryl Ferguson

[Jo2626]

Thanks a lot- I will private message you now

[Jo2626]

Couldn’t figure out how to private message you but I did reach out to your daughter via fb.

[Jo2626]

Still have no heard back from your daughter. Does anyone else have success stories they can share?

[Cheryl F]

Jo:

Send me an email at @ cheryl@roadback.org and I will give you Jess’ new email address.

I know she got your FB message and replied so there must be a glitch in that system too.

Cheryl

[Zoe]

Hi Jo, Wish,wish, wish I had known about AP in my 20’s. I am now 42 and have been doing AP for 2 years for MCTD. to make a
long story short I have been taking plaquenil and doxy and ran out of plaquenil about a month ago and now have some skin
thickening and neck and foot pain returning. I would give it a try. I still get angry when I think about the Dr.’s I went to
and they never mentioned this treatment. Always saying we will wait till you have organ involvement and then treat you.
Good luck.

[Jo2626]

Thanks just emailed you Cheryl.

[Cheryl F]

I got your email and replied, let me know if for some reason you don’t receive my email.

Cheryl

[Anonymous]

Hi Jo,

I would like to connect with you.
After seeing 3 rheumatologists and 4 other specialists, ANA 1.80 but negative for all the rest of ANA panel
my last rheumi believes that it is UCTD.
I will start the mino today. I am going through a lot, a lot of stress now as I was also diagnosed with brain aneurysms
5 months ago.

Please let me know if you started again the mino. My symptoms are: Burning of nose, pain in the eyes, severe fatigue,
tightness of chest. No skin rashes.

Thank you!!!

[June3443]

liztexas who posted above has recently started on minocycline 100 mg once a day, but is experiencing extreme nausea. This is one of her symptoms before starting on the mino. She took a zpak and improved about 80 %. After that Her rhuematologist agreed to let her try the mino. She has been very sick and trying to find out what is wrong with her for about 4 months.

I have been corresponding with her and suggested she post here. I told her she might try reducing her dose to 50 mg. I think she has contacted her doctor to ask about that.

Maybe someone here could offer some help or suggestions.

[Maz]

@liztexas wrote:

Hi Jo,
I would like to connect with you.
After seeing 3 rheumatologists and 4 other specialists, ANA 1.80 but negative for all the rest of ANA panel
my last rheumi believes that it is UCTD.
I will start the mino today. I am going through a lot, a lot of stress now as I was also diagnosed with brain aneurysms
5 months ago.

Please let me know if you started again the mino. My symptoms are: Burning of nose, pain in the eyes, severe fatigue,
tightness of chest. No skin rashes.

Hi Liz,

June has asked us to respond to you. I had read your post last week, but as you seemed to be responding to Jo and asking her a question directly, felt you were looking for answers from her specifically. 😉 Do hope you will feel welcome here…we try and make sure no post is left behind, especially from newcomers, but sometimes it happens. 😳

Please know you are most welcome to post a new discussion thread if you would like to ask questions here, as they can be easily missed when inserted in another discussion and a pertinent subject header can often attract more attention. That said, I can see why you posted on this thread, because of your suspected UCTD and just beginning minocycline.

June says above you are experiencing nausea with your minocycline doses. This can be averted by eating a small snack with the dose, just nothing with minerals that can bind to the tetracycline and render it useless in the gut. This is because the tetras are so chelative. Usually a little food, like a few crackers (gluten-free if you are watching your diet) or an apple or apple sauce will do the trick. The nausea will often pass as the body adjusts.

Have you been treated for your brain aneurysms, surgically or with blood pressure meds or in some other way? If by blood pressure meds and your symptoms began after starting them, is there any chance you may be reacting to such a drug? Some BP and heart meds can cause a drug-induced autoimmune response that clears when the drug is switched out or stopped (but these should never be stopped cold turkey). This is just a fellow-patient thought, Liz, that may be completely moot or, if it rings any bells, to ask your doc about.

Rheumatic diseases can sometimes present with a muddy picture. Sjogren’s, just as an example, can appear with similar symptoms to the ones you’re describing, because it can cause mucous membranes to stop producing lubrication (e.g. tears and saliva) and can also produce inflammation of blood vessels, called vasculitis. This can lead to a number of cascading symptoms, like light sensitivity, indigestion, mouth ulcers, etc). Sjogren’s can be primary or secondary and, when it presents as a number of symptoms, it’s dubbed Sjogren’s “Syndrome.”

Many of symptoms overlap with other AI diseases, so it’s not necessarily just one or another. The fact that medicine calls it, “Undifferentiated,” means that they don’t really know what it is, because there are overlaps with other rheumatic diseases (e.g. lupus and sjogren’s or rheumatoid arthritis and lupus) and no one clear-cut presentation. Sometimes a more definitive diagnosis can be made further down the road as labs and symptoms become more apparent. However, hopefully as you’ve started AP so quickly, things will turn around quickly for you.

When you received your positive ANA result, were you told which pattern showed up? E.g. homogeneous, speckled, nucleolar?). FYI, the actual pattern can be helpful as it may indicate which rheumatic disease is presenting in a more primary way.

Glad to hear you’ve begun your road back, Liz, and hang in there! This forum is such a friendly one and do hope you will feel welcomed.

[June3443]

Thank you, Maz. I will email Lixtexas to make sure she reads this post.

[Anonymous]

Hi Maz,

Thank you so much for your very detailed e-mail.
I started vomitting yesterday so I HAD TO stop the mino. The Z-pack that I took for 5 days was azothromicin and it greatly reduced my naisea, it was not mino. I am waiting for my Rheumi to see if he agrees to switch me to 50mg.

I have not had my aneurysms treated yet(endovascular surgery) for the following reason: After surgery, I will be put on aspirin fir life because of a tent placement in one of them. With all the nausea going on for 4 months, I don’t think my stomach can take it and I am putting a hold on it. Aneurysms is not something that can be fixed with meds.

My ANA has been back one time 1.80 nucleolar and another time 1.80 speckeld. ALL the other bloodwork of the full
ana panel including Sjrojens comes completely negative!! My concern is that I might have something that is not auto-immune and doctors have not been able to figure out. My symptoms for 5 months:severe fatigue, nausea, chest tightness, eye pain
and burning of nose and joint pain. I am going through a lot and my family is very sad to see me this way(my husband and 2 kids ages 9 and 12). I was a perfectly healthy person 6 months ago and got bombarded with all these issues in addition to the sad news of the aneurysms.
June has been a big support to me and has become my on-line mom!!

When I tried the mino I tried eating snacks and did not help. The stomach issues lasted the whole day, not just immediately after taking the mino. I feel soooo frustrated that I have been ill for 5 months and I even quit working. Thankfully I do not have to work, but that is defintely the life and energy I want to raise my kids. Beleieve me, it is deeply sad what I am going through and I feel bad that I keep postponing my brain surgery because I feel soooo weak and sick

I was hoping Jo would answer my post , but she has not so I am glad you posted your reply.

Thank you!!

[Maz]

@liztexas wrote:

Thank you so much for your very detailed e-mail.
I started vomitting yesterday so I HAD TO stop the mino. The Z-pack that I took for 5 days was azothromicin and it greatly reduced my naisea, it was not mino. I am waiting for my Rheumi to see if he agrees to switch me to 50mg.

I have not had my aneurysms treated yet(endovascular surgery) for the following reason: After surgery, I will be put on aspirin fir life because of a tent placement in one of them. With all the nausea going on for 4 months, I don’t think my stomach can take it and I am putting a hold on it. Aneurysms is not something that can be fixed with meds.

My ANA has been back one time 1.80 nucleolar and another time 1.80 speckeld. ALL the other bloodwork of the full
ana panel including Sjrojens comes completely negative!! My concern is that I might have something that is not auto-immune and doctors have not been able to figure out. My symptoms for 5 months:severe fatigue, nausea, chest tightness, eye pain
and burning of nose and joint pain.

Hi Liz,

Thanks for elaborating on your situation. I can understand your profound worry and sadness. Many of us here have experienced the same feelings upon diagnosis and we can all probably equate to varying degrees. You’ve found a place of friendship, hope and support.

I had a thought about minocycline that you may want to check with your doctor before starting at a lower dose. Minocycline can, in some cases, cause what is called “benign intracranial hypertension.” Although minocycline is given to stroke victims after the event because of its neuro-protective properties and also to MSers for a similar reason, it may actually be more beneficial to you to delay starting minocycline until you have proceeded with the surgery to treat your brain aneurysms.

http://www.medsafe.govt.nz/Profs/PUarticles/bih.htm

This side-effect is a rare one and, when it occurs, it usually passes as the body adjusts to the minocycline, but it is one that you may wish to side-step just for the time being as you may not wish to risk any increase in brain pressure. Instead you might want to consider starting on a different class of antibiotic, such as a macrolide (e.g. azithromycin or biaxin). Some of the nausea you’re experiencing may be due to the brain aneurysms, especially if this was occurring prior to use of mino, but until the aneurysms are treated, you may not be able to discern what is a transient drug side-effect and what is not.

Just for possible interest, ANA can be positive in perfectly healthy people, especially in low levels, but usually when it is positive alongside rheumatic symptoms, it is taken as an indicator of underlying autoimmunity, even when other markers have not yet shown up. In other words, labs are supportive of a diagnosis, but not definitive in the absence of disease, but do support a diagnosis when symptoms are present. There is a really good website, called Lab Tests Online that gives a good description of the ANA test and what the different patterns can indicate:

http://labtestsonline.org/understanding/analytes/ana/tab/test

As just a fellow-patient suggestion, it is probably wise to discuss any risk of “benign intracranial hypertension” with your doctor with minocycline, considering your condition, Liz. It may be something that is not important, but it may also be something of which your rxing doctor is unaware and he may prefer you not to be on it for the time being. It wouldn’t mean you couldn’t go on it post-surgery and recovery, but it may just be ramping up your risks at this stage unnecessarily when a different class of abx may do you well until it would be safer to go on it. Mioncycline is a pretty benign antibiotic, used for kids every day for teen acne, but I just got this nagging feeling that I should mention this potential side-effect to you, given your current concerns about the aneurysms.

Is your current doctor open to abx therapy? If not and you are able to travel to Lufkin (presumably you are in TX?), there is a really good AP doc there.

Hope something here helps, Liz! 🙂

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