Help..Urgent.. Itching continuously …rashes

[Wendy]

Spiffy, clear mammogram! It is done digitally so,there are not films. The clinical director of the center was with me the entire time and she called me yesterday AM early to deliver the news: it was very painful, more then in the past….and indeed was stressed to the max….as either the condition or mino seems to have really hurt the connective tissue and muscles. The lines/rash had about completely receded. Have to determine how to increase doseage slowly…Just wrote Phil a response for you to read, also. Thank you for your encouragement and hope you are having a nice week-end wherever you live.
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,

Have you considered asking your doctor to switch you to doxycycline? It’s a lot easier to tolerate than mino. You would probably have little trouble tolerating the full dose of 100 mg twice a day.

Phil

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

[Wendy]

Hi Phil,
Thank you for the suggestion, but I’m completely allergic to even 50 mg. of doxycycline. That was tried a couple of years ago and had to stop that doseage w/in 2 days even though it was not for SS.
Took the 100mg of mino close to 9 PM last nite….still lightheaded and would not get behind wheel of car.
Z pac is about the only drug other than Tylenol body tolerates…Even w/ZPac tolerate the tummy issues for a couple of days, though that is only a drug for 5 days. A very ultra sensitive system have been given…At barely over 100 lbs. wish a lesser doseage would be enough!
Your response is 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,

[Spiffy1]

So so happy for you! It is so nice to have that out of the way. This will reduce your stress level a lot! Mine always really hurt too. They tore a muscle one time and I was sore for 6 months! I am trying the compounded version of minocyclene and I think doing ok. Not far enough along yet to make a decision. Keep plugging along!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[PhilC]

Hi Wendy,

Sometimes an allergic reaction is due to one or more of the “inactive” ingredients and not the active ingredient. It would probably be worthwhile to see an allergist, and get tested for allergies to tetracycline, doxycyline, and minocycline. Even though you’re not allergic to minocycline, it would be useful to include it for comparison sake (i.e., a kind of “control”).

Phil

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

[Wendy]

Hi Phil, thank you for that suggestion!! In the past 8 years have been prescribed mino and never had these reactions, but the regimen was only for a couple of weeks. Also many years ago was on the tetracycline, no reaction other than being careful in the sun. Had not thought of being tested for medication per se…..add that to my to do list this week! Bless you.
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]

Spiffy, in reading the first line of your symptoms, mine are so similar. What is a flare fall?
Yes, very, very thankful for the clear report and indeed that has been a release. I can still see some scarring from the rash or whatever it was.
Does your regular pharmacist make compounded minocycline? Is it in capsule form? My dermatologist had had a pharmacist make up,a compound, Ascend, for an itching irritated ankle area which I have used for some of this other itching 1x a day…has helped a bit.
Thank you and please keep me posted on your improvement.
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,

[Spiffy1]

I am laughing about Flare fall. What I mean is that my first real flare….that I knew something was really not right…happened in the season of fall! Unfortunately I am paying out of pocket to give compounded minocyclene a try. I am not ready to have a final opinion yet. I have had a couple of transient rashes that come and go. Is that from the minocyclene? High histamine foods? Chemical sensitivity? Mold? Hormones? I have no idea. I know they are not bad enough to stop the minocyclene. I am waiting for the full rash on my stomach before saying definitely what’s what. If I can take it, I will petition Aetna to help pay for compounding by getting my doctor to preauthorize saying I am allergic to fillers. I am so unsure of minocyclene at the moment there is no way I would take more than 100 milligrams in a day. I have also been taking it with a little food. I guess I am hoping to fool my very keen immune system. And Aetna will not pay for it, but I would try anyway. A regular pharmacist cannot compound. I use my compounding pharmacist that makes my LDN. She is very caring and as is important to me as my doctor.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[PhilC]

Hi Wendy,

Have you tried any medications for your Raynaud’s?

Phil

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

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