June’s Scleroderma & AP

[June3443]

My older brother (81) has had scleroderma for 40 yrs so I was aware of the disease and symptoms even tho we had been told that siblings did not have scleroderma too. I didn’t realize my early symptoms were connected to SD. I developed an irregular heartbeat in 2001 and prescribed atenolol 12.5 mg to regulate the PVC’s even tho I had low blood pressure. Also about that time I got carpal tunnel symptoms in both thumbs. In April 2009, I had a bad cold/flu and also handled some pesticide. Soon after I had my first Raynauds attack. Then I noticed my face was swelling and I had rosescea. I had red patches under both arms and on face. My feet and hand started swelling and were sore. I asked my primary care dr to test me for SD and by the time they drew my blood, it would hardly come out. Dr changed my med to diltizam which is a vasodilator to help with Raynauds and scheduled me with a rheumy who couldn’t see me for 2 months. My symptoms were getting worse fast so I found RB. I was able to see a derma dr who gave me doxycline and a jell for my face. I dont know if he k ew about the AP or if I just got lucky.

I took the Harvard study to a derma dr at the teaching/research UAMS and ask to try the mino. I quickly saw improvement. At my first rheumy visit I showed him the study. He knew the dr in the research. He didn’t take me off because I told him I was improving. He did baseline testing. I was already getting pulmonary hypertension. I had to have a brace to sleep in at night because my hands would go numb. I had terrible night sweats and then I would freeze and have a Raynauds attack if I went in a store with too cold air conditioning. After my second visit with rhuemy, he said my liver was back to normal. I don’t know what that meant. He was more concerned about treating whatever problems I would develop later instead of finding out how to stop it.

I also had 2 root canals that were not properly completed. I read the thread about dr. Meinig’s writing on root canal coverup. Found a good endo dentist who retreated my teeth; and they were infected. I was determined to rid myself of infection

I continued with minocycline and stopped everything else. Then I gradually added back. Ibuprofen seemed to help also. After about a year, I went from 100 mg 2/day 7 days a week to 100 mg MWF. After 6 mos or so I stopped altogether. I started having hip pain and got a shot for it. That helped for awhile and the the pain returned. I also started having severe muscle spasms in my hands and feet. I started back on the mino about 2 weeks ago and my spasms are gone and hip is better. I had started having intestine problems with constipation. It seems that my intestines are constricting. I usually take miralax and metamucil for that but I got off schedule and created a problem. My last colonscopy showed I had diverticulitis. I am having another tomorrow to see if anything has changed.

I seem to be having extremely sore muscles in the calves of my legs. It seems to be more than just muscle strain. I haven’t done much to make them sore. I don’t know if this is a problem with the medicine since I just got a new prescription of Ranbaxy minocycline or if it something like hexing because I was off the med so long. Right now that is my main complaint which is pretty good.

I plan to get an appoint with Dr.K in Lufkin to follow up in case I need to take another antibotic with the mino..

My sister also had scleroderma. She probably had minor symptoms before she got sick last year. She developed vasculitis neuropathy which I think was caused by her Sjogrens and scleroderma. She was treated with predizone and cytoxin. Her rheumy wouldn’t try the AP. I think the drugs were too high doses. She passed away 1/6/12. She was 76 years old.

[Trudi]

@June3443 wrote:

My sister also had scleroderma. She probably had minor symptoms before she got sick last year. She developed vasculitis neuropathy which I think was caused by her Sjogrens and scleroderma. She was treated with predizone and cytoxin. Her rheumy wouldn’t try the AP. I think the drugs were too high doses. She passed away 1/6/12. She was 76 years old.

My deepest sympathy. I hope you continue to find healing.
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Lynne G.SD]

Hi June;
Now that we can’t get the true minocin it is a real chalenge to find a generic that suits us.My SD came back slowly over 6 months when I was taking APO instead of Steifel.I switched to Teva and got back to normal within days but this situation scared the —- out of me as I ended up at the ER asking for a dose of prednisone to reduce swelling and pain after a decade of normalcy.I have heard that Ranbaxy has not worked for many people but that Teva and Watson mynocyclines do.Keep an eye on your pain level and if it gets bad try switching to see if it helps.
Lynne

[richie]

Hi—Stopping prematurely just invites a set back –one year on minocycline is way too soon to stop IMO—I have had many conversations over the years with Dr T. and the incidence of relapse happens too often in folks who stop minocin completely –thats why I still take 200 mg daily even after about 6 years of complete remission –it now 13 years total in taking minocin with zero side effects –
richie

[June3443]

Thanks for your responses. I will try to find a pharmacy that carries Watson. In the meantime, I am getting better. It could have been some hexing with the muscle pain. The muscle spasms are gone. I noticed some tightness in my thigh and felt lumps under the skin. I remembered a post about collegan in the tissue and deep tissue massages helped. I started massaging and was able to break it up and now my thigh is okay.

Ritchie, good to know that I can stay on the mino and not worry about side effects. That was a concern. I had read that if your skin took on a green tint that vt. C would help.

[kater]

Hello June
so sorry to hear about your sister. My thoughts are with you. With respect to the Vit c there has been some recent discussion on that with respect to SD and you can find that in the search box. I have SD also and after only a couple of months on mino started getting a problem with my teeth going grey. I am on 1000mg of ester c (to protect the stomach) and vitamin k. Both these are supposed to help prevent discolouring of the skin and teeth. The dentist was able to clean my teeth and the vitamins and hitech electric toothbrush seem to be helping. You have to decide what is right for you, but I think it is better to prevent the problem than try to fix it if it occurs. Also the probiotics are essential. I have been doing myofascial release and whole body vibration and collagen and skin tightness are improving (thank you to my friend Minocin also 🙂 )
my best to you
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[June3443]

Thanks. I have been rinsing with hydrogen peroxide and it has kept my teeth white, I guess, because I haven’t had that problem. I intend to keep taking 200 mg/day for awhile and then go to 200/day MWF. I take baking soda if I notice any acid reflux or yeast problems. I do take a probiotic when I can remember. My best to you, too.

[lynnie_sydney]

I intend to keep taking 200 mg/day for awhile and then go to 200/day MWF. I take baking soda if I notice any acid reflux or yeast problems. I do take a probiotic when I can remember.

June – best to make the probiotic a daily must if you are on 200mg/day. An ounce of prevention is soooo much easier than cure – trying to deal with candida once it’s there. Also, I would not be in any hurry to go onto a MWF regime if you are handling the daily dosing okay. Your first post indicated that you had quite a backslide when you dropped it before. Many SDers are on a daily dose for years before they consider a pulsed regime (and some dont). I’d at lesast get Dr K’s input before I made any changes.

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)

[June3443]

Thanks. I’ll do that. I have a hard time working in the mino and the probiotic, but I know what you mean about the yeast. My sister’s mouth was full of blisters and nothing relieved it. So, I will be more diligent. Right now I don’t really have an AP doctor. My primary care doctor is okay with giving me my prescription for mino but don’t think would do more than that. X-ray showed bone spurs on hip and spine but don’t know if that is all of my hip pain. The mino is helping but I still have pain at night when I lay on that side and now have a “catch” in it when I walk. I think the tendons and muscles are tight in tha hip. I am afraid I will get a orthopedic dr that doesn’t understand scleroderma and will wind up with a hip replacement and still have a problem.

I won’t be able to see dr. K until May.

[richie]

Hi–Did you get a definitive diagnosis of scleroderma cause some of your symptoms dont really fit –bone spurs arent in the SD picture and your face swelling also doesnt fit –rather the face tightens and actually shrinks –the lips also shrink –butterfly on the face also appears in other rheumatoid diseases —Have you seen a knowledgable rheumatologist —The volunteers here would gladly givr you some doctors names —
richie

[June3443]

Thanks, Richie,

I was tested by my primary care dr and referred to diagnostic clinic where I saw a rhuematologist. I feel pretty certain about my diagnosis. I did have the drawing of my face and lips but that went away after I started the mino. I still have a slight tingle in my lips. My sister had very little skin involvement with her Sjogrens scleroderma. Hers and mine seem to be more in the vascular system. My brother has the skin involvement..classic drawn face and mouth and hands. The bone spurs aren’t part of the SD but the tightness and drawing of the muscles and tendons are, I believe, since it is improving with the mino.

I am going to see an AP doctor in may to make sure there is not something else that needs to be treated. However, when I am on the mino, I have very few issues.

My family grew up in a rural area with lots of ticks and mosquitoes. I know of several people with Lyme in that area. I also know several others in our sparsely populated county that have scleroderma. I had recurring strep throat for about 3 years until i had my tonsils out at age 16, but I was the only sickly one. I believe there is some common connection with our diseases besides genetics and autoimmune. Just wish more people could be helped.

[Lynne G.SD]

Hi June;
I just saw that you don’t take probiotics on a regular basis.You could really be setting yourself up for trouble.Take a look at this.
http://www.vaxa.com/immune-health-candida-overgrowth.cfm

[June3443]

I will start taking the probiotics on a regular basis. Also, now I wont be afraid to stay on the mino long term. 🙂

[Author]

Posts