Month 8 of mino…think I'm moving backwards….

[Wendy]

Beginning month two of the 150 mg per day dosage of minocycline…knee and ankle joint so painful am hobbling,much weaker….hurts to peel a potato,feel as if I need more oxygen though breathing ok and deep breathing to expand lungs…very tight muscles in rib cage and neck…skin is so tight at hips there is nothing to squeeze together…still lightheaded at different times during day, Raynauds has really set in even though keeping temp at 72*, noting a bit of bladder leakage, now indigestion beginning though taking probiotic….some tooth discoloration…still itching…cracked skin at fingertips, using liquid bandage…This downward slide began about 2 1/2 weeks into the 150mg doseage. Have felt so weak have not even thanked the three people who responded to my last ‘report’. Have my annual physical this Wed. 7th and had a metabolic panel taken for the appt Friday. On the positive last week I walked on the treadmill for 1/2 mi. Slowly at PT and was exhausted. My Rheum appt. is in early January.
Thanks for reading all this. Maz, I recall you said may get worse before better. Never had some of these symptoms on Cellcept and of course know they are 2 very different approaches. Very little quality of life now …

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Maz]

Wendy, very sorry to hear you are feeling so rough. I recall talking by phone? I can remember some of your backstory but not all as it’s been a while. Yes, cellcept is a very different type of drug approach for treating SD and it can help to suppress symptoms, but may also be a problem with chronic Herpes Zoster. How is your corneal ulcer doing? Did you ever try something like colloidal silver drops?

If you are up to answering, could you reply to the following?

Are you gradually increasing your mino to the 100mg twice daily dose?

Did you doc only test your metabolic panel?

Have you been tested recently for: CRP or SED rate, complete blood count, Thyroid labs (TSH, Free T3 and Free T4), Vit D, Iron panel (including ferritin), B12?

When was you last thyroid panel run? Are you also dealing with Hashimoto’s autoimmune thyroid disease?

It would be good to know what your thyroid and inflammation labs are showing, because if a person has inflammation, they quite often won’t be converting levothyroxine adequately to the active T3 hormone. If not inflammation, then deficiencies in ferritin (stored iron), Vit D3 and B12 can also prevent proper conversion. This can (a) make it very difficult to get well again on AP and (b) create symptoms that are very similar to rheumatic disease.

It’s hard to know what is happening and we are not docs here, but, from personal experience, asking your doc to run these labs can provide some clues if your thyroid is slowing progress.

We can’t know if what you’re experiencing is disease regression or a herx, but there have been SD patients here who have felt significantly worse in their first year. Slowing down SD can be like slowing down a freight train, but once that freight train does slow down, improvements arrive in small increments. You could try PMing GayG who had a similar time of it in her first year, or you could search her past posts to read about her journey on AP in the early days. She later wrote to tell us she had recovered, felt she was in remission, and was enjoying life to the full.

Have you tried contacting Dr. S. in Iowa for any insights? It’s hard to know if he would suggest lowering your dose back a step, or whether to increase it by a step up to the full 100mg twice daily. Some people are more sensitive than others to AP and might even find they feel better if their doc suggests a week’s washout.

Any chance your generic brand was changed recently? Another reason that people relapse is when their pharmacy changes generics and one generic may work less efficiently than another or cause sensitivities that weren’t experienced before.

Also, have you considered traveling to see an experienced AP doc or asking your prescribing doc to consult with one?

[Wendy]

Hi Maz,
I am hoping you received my long answer to your questions the afternoon of your response to me, since I do not see it on the main site. My physical with my primary care doctor last week and lab results are very normal. My heart rate was higher but I’m not exercising other than stretching for about 20+ minutes a day.An EKG was normal and he wants me to check my blood pressure about four times a week and keep a record as I tend to have white coat syndrome in his office! He had not checked iron or B12 levels with the lab work, but I can ask the rheumatologist to do that when I see him on January 3. The level of continuous pain is probably about 7 to 8 out of 10, and it is mostly now in hip flexors, knees, calves, and ankles. The skin is so tight at the hips there are actually stretch marks now. With the lightheadedness I cannot imagine what 100 mg in the a.m. would do. My ophthalmologist/surgeon is surprised the body is even tolerating 150 mg a day…. Saw him on Monday and will see him again on December 29. Question, what time of day are patients taking the mino… If it is meant to be every 12 hours I am not doing that. It is usually about 6 AM for the 50 mg and 9:30 PM for the hundred milligram. What did you mean with the terminology a week’s washout? It is the weakness, as in picking up to bed pillows are heavy, and walking two or three aisles in the grocery store wipes me out that is so wearing. Of course with the cold weather upon us right now Raynauds is taking its toll on my fingertips…a first…even inside my house! Have been using liquid bandage that minimally helps. Too weak to research the two individuals you mentioned in your response to me. It appears as if there will not be Christmas cards sent or decorations in my home this year unless there is some improvement. Yes, it could be worse and am thankful for all advice.. Most Sincerely, Wendy
PS Hoping you are doing well

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Lynne G.SD]

Hi Wendy;
This disease sure is a bummer and it seems that most of us on AP have to figure out what works best.I started off on 200mg mino a day away from food.after a few months of misery I started taking it with food,breakfast of toast,coffee,banana or other fruit and it worked marvelously.Richie,on the other hand can take it without food with no problems.
You are way too early in the game to see improvement yet.I had to wait at least 6 months just to get over the brain fog and have a little less pain.It took a good couple of years to feel well and close to four to have full dexterety in my hands.The one really good thing about AP is that it knocks out the calcium deposits relatively fast,about 5 months for me.
One thing about mino….it does not kill off any bacteria on it’s own.It only weakens them and it is your immune system that does the killing.Cellcept suppresses it so it will probably take much longer to see a benefit from AP. That is if you have bacteria which I suspect we all do in the beginning.
The other way mino works is that it controls Interlukins,SD’s are IL1 and IL6.It also controls Transfer growth factor 1_B which causes the fibrosis.On top of that it activates our CB1 and 2 receptors so all in all it works very much like this new med Resunab that is being touted as the miracle drug for SD.Compared to what that will cost ,mino is cheap

[richie]

Lets try and do something about the Raynauds –speak to your primary care doctor about a calcium channel blocker –I take Adalat xl –I too had bad Raynauds and this really helped within two weeks of starting –#2 –It is very important to keep your body core warm ALWAYS—keep a sweater on all the time —Remember with Raynauds blood leaves the extremities to go to your core to help warm it. Gloves of course –and low insulated socks under your regular foot covering —-I have it much easier –comes cold weather I use my 40 below socks from wigwam –heavy wool –a bit costly but they last forever !!!!!!!!!!!!!!!!!!

[Wendy]

Richie, thank you for your suggestions. Have tried calcium channel blockers…3 different ones. Body is so ultra sensitive could not take. About 1 1/2 years ago the rheumatologist placed me on a beta blocker and could never get beyond 3.25 mg in early evening…felt drugged for a full year but it helped a very mild cardio dysfunction discovered in an echo cardiogram…now cleared. It did not do much if anything for Raynauds . Yes, I wear gloves,sweater and warm up fleece jacket in house at 72* but am allergic to wool directly on my skin. At the moment all 10 of my fingertips look like wrinkled raisins and four of the fingers have tiny Skin cuts at base of fingernails. Yes I have my fingers bandaged first with liquid Band-Aid and then a regular Band-Aid on top of that. Where do you find low insulated socks? My weight is at 106 lbs.and am not gaining, though eating nutritionally.
The rheumatologist has strongly urged me to stay indoors when the temps are in the 30s or below. Add this to having to tape my eye about 4 hrs. a day for the neurotrophic cornea. It has been a very rough few weeks with such very stiff joints and muscles and the extra tight skin. Yesterday we had a brief few hour warm up to about 72° before it dropped back to the 30s last night ….what a difference that made! I will ask the rheumatologist about the calcium channel blocker you are taking when I see him on January 3. Scleroderma is his specialty and though not an AP doctor, he has received many national awards for his research. Thank you again and I will watch for your suggestions. Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Wendy]

HI Lynn, your response is appreciated so very much. In Jan. I will begin month nine and seemingly feel physically weaker every few days. I have to bring the laundry basket down the stairs step by step and can barely pick it up. Folding sheets wipes me out as well as changing linens on the bed. What are interleukins? I will save your response and show it to my rheumatologist on January 3. With my vision compromised in my right eye, it is difficult to read research. In a.m., I take the 50 mg with a piece of gluten-free bread and at night it is not necessary to take any extra food when taking the 100mg pill. Lightheadedness names throughout the day and evening intermittently. My hands are more swollen than usual though They do not look that way. I keep doing stretching exercises during the day. Thank U for any additional suggestions… So very grateful!
Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Lynne G.SD]

Hi Wendy;
Calcium chanelblockers did not work for me either.Even at low dose my blood pressure dropped way too much and I was so dizzy that I would almost faint.When I found my AP doc. she suggested I try an ARB because it is much easier on the body,olmesartan did the trick and now I only take 20mg in the winter.Summer is the time I have the worst Raynaud’s.My body is nice and warm but if a slight breeze hits my neck or spine my hands turn white all over if I forget to take it so then I take 120mg,no problem as it does not make my blood pressure any lower than 6-7 points

[Maz]

Wendy, are you keeping your magnesium spaced two or three hours away from your mino dose? Minerals can impede absorption of mino (and other tetracyclines), binding to them in the gut and rendering the abx less able to do its job.

Has your doc suggested viagara for your Raynaud’s? Before it was marketed for male “performance,” it was actually developed for folks with circulatory issues. Clearly it’s not for anyone with heart issues, but some SD patients have found it helps with Raynaud’s symptoms.

Systemic enzymes (serrapeptase, nattokinase, etc) are also very helpful in breaking down fibrin in the blood and also breaking up scar tissue, if taken consistently on an empty stomach and other blood thinners aren’t being used. SD patients can have “sticky” blood and systemic enzymes can improve circulation. Perhaps Lynne can share more on this for you.

People who experience digital ulcers have also shared they have found pure Manuka honey, applied to the fingers,to help with sealing the ulcers/fissures and that applying it at night and wearing clean, white cotton gloves (its sticky) is the best way to use it. Manuka honey has wonderful natural healing properties, as well as some antimicrobial and anti-fungal properties. You might be able to find it at a local health store or online. Alternatively, doctors sometimes prescribe nitrobid paste for digital ulcers.

[Wendy]

HI Maz and thank you again and again. Yes, magnesium and other supplements are usually taken more then 4 hrs. After the AM mino.just talked to Whole Foods, they do carry Manuka honey and was shocked at the pricing. Online from Swanson supplements and others pricing is very similar. I keep forgetting to add onto my profile that 81mg of low dose aspirin is taken as well. My rheumatology appointment has been moved to early February as the doctor is going to be out of the office for the original January 3 date. Having not heard of the systemic enzymes mentioned, are those prescribed?
Here it is close to 4:30 PM and I’m still having waves of lightheadedness from the 50 mg pill around five or 5:30 AM. My PC physician A couple of weeks ago thought there was a possibility I could have hypoglycemia when I seemingly need to eat every three hours or so and protein seems to help more than fruit. Meat, which I know can be inflammatory seems to feel my stomach and relieves dizziness more than chicken or fish….try to eat that at least 2x a week. Still so very weak behind knees and those same joint and muscle groups even though stretching 30 min a day.
Merry Christmas?
Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Wendy]

HI Lynne, thank you again for helping out. Both beta blockers and calcium channel blocker’s make me incredibly dizzy and weak on top of the other weakness From the SS or mino. I tend to have big-time white coat syndrome with my primary care physician so low blood pressure is not the issue. My blood pressure cuff has been calibrated with theirs at the office and there are just a few percentage points apart, so when I’m home my blood pressure is normal. When I see the rheum. I’ll ask about tha ARB and whatever it is you take. Blood flow is seemingly an issue now this winter.. My fingernails are cracked, breaking while keeping them short. And now with those tiny cuts and redness at my nail beds in the skin, it is aching hands painful fingertips. I’ll buy the Minuka honey Maz mentioned after Christmas. Trying to stay out of crowds and naturally stores are mobbed. Thank you for all your advice!
Have a Merry Christmas with friends and family if possible.
Sincerely
Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

[Lynne G.SD]

Hi Wendy;
My AP doctor is not really AP trained.She is an environmental/holistic doctor who accidentally got into AP after being just about bed bound for a couple years with Lyme.She is a dietary specialist and always has been right.She says that SDers need loads of protein so don’t worry about meat and bring on the eggs, just not too much beef.I had to avoid all legumes and grains and what a difference that made.Even now if I have a lentil salad I am in deep dodo.

[PhilC]

Hi Lynne,

Lynne G.SD wrote:

olmesartan did the trick and now I only take 20mg in the winter.Summer is the time I have the worst Raynaud’s.My body is nice and warm but if a slight breeze hits my neck or spine my hands turn white all over if I forget to take it so then I take 120mg,no problem as it does not make my blood pressure any lower than 6-7 points

Do you take 20 mg of olmesartan or 120 mg?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Lynne G.SD]

Hi Phil;
In the winter I only take 20mg.When it very hot in the summer I take 120.In the winter I have no problem as I have a coat on.It is now -20C and I just went out to put logs in the boiler for the greenhouse,no hat,no gloves and spent 10 minutes out with no problem what so ever because my back was covered.

[Wendy]

Hi Lynne,
Would you please be so kind as to share with me any reaction that you might’ve had to olmesartan? Have just left a message with my rheum. Nurse line. My appointment has been postponed by the office until February 9, Raynauds now is really very uncomfortable on all my fingertips and of course my feet are cold too. Earlier you had mentioned that it had taken probably four years for you to be totally feeling pretty normal. I’m not sure I can last four more years… Have a grandson in Florida who I would really like to see while he’s still a little child!
Also, I am really noticing the beginnings of the gray blue discoloration of the enamel on my front teeth and do not think there’s anything to restore enamel. Thanks so very much.
Happy new year,
Wendy

Systemic Scleroderma, Raynauds, Shingles 3x in right eye
Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

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