Week 3 of full 200mg mino per day…Feeling sick w/ increased muscle weakness

[Wendy]

Hello again, taking that extra 50 mg. about mid day…could not handle the 100 mg. in AM. Could write an hour by hour journal of reactions…w/in 15 min have strong Raynaud’s attack lasting up to an hour, itching all over for hour, followed by queasiness, chills, nausea ( today still nauseous ), weakness in upper thighs such can barely pull myself upstairs lasting through late evening. Hungry every few hours but food does not taste good. Some of the reactions from the ‘what you may experience’ are those to call dr right away….have not done that. Barely functioning and difficult to stand up straight due to muscle weakness. Extreme pain seems to have lodged in r.groin and down upper thigh. Stretches every day for at least 30 min. I feel ok only when lying down. Tomorrow have spot with PT myofascia therapist which will help for maybe a day so am not hobbling as much..Could this possibly be a Herx response to the additional 50? Thanks everyone.

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,

[PhilC]

Wendy wrote:

Could this possibly be a Herx response to the additional 50?

Yes. Here’s an approach I have used in the past which may be helpful:

1. Extra 50 mg is taken once a week on Monday or Friday for one month.
2. Extra 50 mg is taken twice a week on Monday and Friday for one month.
3. Extra 50 mg is taken three times a week (M/W/F) for 3 or 4 months.
4. Extra 50 mg is taken every day.

It would probably be helpful to take a break from the extra 50 mg and begin again next month. Run it by your doctor to see what he or she thinks.

Phil

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

[Linda L]

Wendy,
One of Valium’s side effects is muscle weakness. If you can stop taking it and see if it helps.
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Wendy]

Phil, thank you very much for that regimen…still itching all over from the 50 mg taken at 6AM today….have found a couple of places on body appearing as a rash…new reaction. Will not take the mid day 50 mg., start slowly again and hope taking a Tylenol around noon will help with pain for a few hours.
You are so appreciated.
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]

Linda, yes, I know Valium can cause muscle weakness. The 2 1/2 mg before going to bed is the only drug that actually takes away the nerve and muscle pain. If I take more than that, I feel drugged all the next day. The weakness has increased with each increasing doseage of mino. And now increased itching and a little rash… Thank you so.
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,

[Airen]

I am fairly new to all of this but since I am past my herxing stage and am able to look back you can see more clearly that it definitely looks like you are herxing big time but even more sensitive and should maybe take a slower approach like Phil outlines above. The first 6 months were pure hell for me and I wasn’t sure I was even healing or that the protocol was working…boy am I glad I stuck to it! I am doing wonderfully now! Almost in remission…RF was down to 14.5 at last check and waking with little to no pain and definitely no stiffness. Just go low and slow. I was on the 100 mg. MWF for 4 months before I upped my dose and then on 100 mg twice per day M-F for 4 months before I upped it again to 100 mg every day. That is my current dosage 100 mg twice daily. Had to introduce diflucan recently and feel much better.

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[Wendy]

You are on a good path! My rheum., a scleroderma sprcialist, fully believes the research for Mino and RA is a good proven one. He is not an AP doctor and does not think research is complete enough for total success w/ SS patients yet accomodating since my body seems to be ultra sensitive. Today minus that extra 50mg. Has been rough…from noon on even water tasted terrible, chills, almost a hot flash, was nauseous ..chills even as I write now and do not think it is the nasty stuff going around. Seem to be filled with collagen in some places which myofascia PT worked on today. I was able to work up to 150mg a day in Oct. with maybe a week or so adjustment….nothing like this. I find myself bent over holding onto a grocery cart, struggle to stand up straight….hope not to see anyone I know at times like this.
Thanks so much for your encouragement, Airen.
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]

Phil, it has been a rough 2 mos. + and still have yet to find a solution to Raynauds.
May have to start a new discussion. Having a difficult time with dizziness still most of day and pushing back up to 150 mg. a day. When I start the 4th day of 50 mg. in AM and 100 Mg at night, the itching and rash upper body returns. Additionally, my pulmonary function test indicated a mild inflammation in lungs. I cannot take an immunosuppressant for it since yet another corneal,ulcer in r. Eye erupted early April and seeing Opthamologist every other day due to its seriousness and the neurotrophic cornea….Immunosupresant would damage what healing is taking place. Still much joint & muscle pain entering year 2 of Minocycline… Very frustrated!
Thanks for reading again.
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,

[PhilC]

Hi Wendy,

Did you ever try taking a calcium channel blocker, like nifedipine, for your Raynaud’s?

Phil

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

[sunny22]

Hi Wendy,
I am so sorry for your issues on Mino! I will share with you my experience with it. I do know that the dizziness is a common side effect. It does pass. I had it for about 3 weeks. Try not to let it scare you. Most of the ppl I know who have taken Mino, have experienced the same dizziness. Regarding your other side effects, have you considered being tested for drug induced Lupus(DILE)? I had similar side effects. I found out 5-6 months later that I had DILE. If that is the case with you, there are other alternative abx. Best of luck.
Sunny

[Wendy]

Sunny, thank you…this sustained dizziness now is at 13 mos. 50 mg at 6:30 this AM and still experiencing it all day…Will take the 100mg in about 45 min. And within 15 min. it will be starting at its strong wave. Have not been able to get to the 200 mg. again. Yes, was tested for Lupus 4x….negative. Will be pulling myself upstairs in awhile. This is also 1st year to find slight inflammation in lungs. I see rheum. on June 9th. Knees and ankles are incredibly weak; calves are hurting, plantar fasciitis ….Have not been out of house this day and 1x yesterday. Lightheaded writing this so will sign off for now. Yes, have spoken to pharmacist…of course these are the reactions to get off a drug, but that is not where we are. If a side effect of any drug is dizziness, it stays with me. Sadly I am not able to exercise…just do stretching exercises.
Thanks for any thoughts.
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]

Phil, thank you. Have checked out that channel blocker and it has dizziness as side effect as most do.
Baffled…
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,

[sunny22]

Wendy, I didn’t realize you had been dealing with the dizziness for that long! Be careful about falling. I worry at times about that with Dysautonomia (which I have but it is better since I had a treatment for it). So you have tested negative for DILE (The antibody assay- anti-ssDNA & anti-dsDNA). Sorry to ask so many questions but I was wondering if you had been tested for Lyme and co-infections? Many of your symptoms/dx’s are similar to mine. Also, I find that taking Takesumi, Alka-Seltzer Gold, and Epsom salt baths, etc., etc. can help quite a bit to detox. I am so sorry you have been suffering for so long. Please keep up the fight! You are not alone. Sunny

[Wendy]

HI Sunny,
Has been a rough week!! Thank you again for your questions and answers. Have been tested 3x for Lyme including IGenix Labs….negative for Lyme. Have not been tested for your condition or Lupus generated by AP..My rheumatologist primarily does immunology, not an AP doctor and has been a researcher for many years at Duke, is a Scleroderma specialist. At the moment have another corneal ulcer, can barely see out of r. eye, on antibiotic drops and starting another round of zpac today….dread abdominal discomfort, etc. ….all trying to avoid scraping of cornea….long story.
Sunny, I believe read your journey on Inspire a couple of months ago on a long thread with a researcher adding input. Wonder if anyone has gone into remission on 150 mg a day? There is just no quality of life between weak muscles and dizziness/lightheadedness most of waking hours. Cannot say I’m sold on mino. But this is only choice and have not resources to travel around country for other specialists.
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,

[Maz]

Wendy, have you tried colloidal silver drops for your eyes? In burn wound care, my daughter (registered nurse) uses bandages impregnated with silver nitrate (different formulation but containing silver nanoparticles). It’s an old, very effective remedy. In Europe they coat joint replacements with it. It helps break up biofilm and infections that thrive in them. Might be worth researching as it’s pretty benign and inexpensive to buy colloidal silver over-the-counter in drops, sprays or gel forms. I have used it for many purposes and find it to be very effective. Upsides – benign and no resistant bacterial forms created with its topical use. Here’s a British study for the successful use of silver nitrate (pharma grade) for leg ulcers and it would presumably also work well for SD digital ulcers.

The use of silver nitrate in wound management.

Question for you: are you noticing you get worse with each dose increase and then it winds down before adding the next dose increase?

[Author]

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