Help..Urgent.. Itching continuously …rashes

[Wendy]

Has anyone on minocycline been known to have broken out in a rash/stinging momentarily/itching on breasts? The backs of my legs look like measles. Yes, I am going in for a mammogram…I will not search Internet and become more anxious than I am now….walked this with a tiny calcification a decade ago…no rash…My rheum. Suggested to lower doseage by 50 mg. which was done on Thursday last week and see PMC since he, rheum. is out of town this week.
The ‘breakout ‘on breasts appeared last Tuesday night…lines are fading a teeny bit. Between 2 PT therapies a week working on joints and muscles…pectoral muscles ache sometimes and know are all part of the connective tissue. Even back to 150mg, still lightheaded, weak in every way. Fingertips are sore and nails show enough nourishment not being received….did buy low dose biotin 3 1/2 weeks ago…about same time moved up to 200mg each day of mino. Praying this is an extreme drug reaction. Temps are too cold now to even walk out the door….direction from Rheum over 2 years ago. Thank you

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,

Not all rashes are a serious problem. I’ve had rashes from both doxy and mino, and didn’t consider them to be a problem since they were localized and didn’t spread. The itching can, of course, be annoying. I’ve had a small rash on the top of my right foot for a long time. It started when I was on doxy and tried to increase my dose to 200 mg per day. Occasionally that rash returns, and that spot on my foot becomes very itchy. When that happens I apply hydrocortisone cream to it and that calms things down for a while.

Based on your description of what’s happening to you, it sounds to me like you may have gotten ahead of yourself. In other words, it appears that you increased your dose too rapidly, and your body is having a difficult time dealing with that. It may be necessary to reduce your dose, allow some time for things to settle down, and then begin increasing your dose again, but at a slower rate.

Phil

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

[Spiffy1]

Wendy, I know how scary it is wondering about rashes especially in that location. We always think the worst. It seems to be a very common place for rashes to develop from food intolerances as well as medications. I have had several rashes appear there, and good mammograms. However, I broke completely out in a rash all over that area after my last mammogram. The doctor thought it might have been from the cleaning solution they use for the plates. I do not look forward to my next one.

So, Phil, do you think I should start out with 25 milligrams and build up? My doctor is going to do what I feel comfortable with, I am sure, because this is a guessing game for all of us. I had even thought to get some more plain cellulose and let my husband decide what to give me…that way my mind will not play tricks on me! I would not know if I were getting medicine or not. I am afraid my nerves are going to make me get a rash! Please forgive me, but this could potentially be a game changer!

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

[Wendy]

Hi Phil, thank you for your experiences and comforting words! Each body is different,yet how much time did it take your rash to go away? It has been a little over a week since dropping the mid day 50mg. When AM dose taken,within 10 min. The lightheadedness begins, another 5 min or so the itching sets in…still itching all over. The strange looking rash has not spread,is bilateral with the R. Breast area fewer spots. The evening dose of 100mg.has much less itching so am not itching if waking up at night to take the Levothyroxin and Tylenol.
Has anyone tried gravioli to build immune system? A friend suggested it to me.
So thankful for your reply!!
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]

Oh, thank you, too! I wrote a reply to Phil a few seconds ago so hope you’ll read it. Have little recollection of rashes or hives…only poison ivy once…and this does not look at all like that…It is bilateral,under and to side of nipple and a couple of lines further to side of breast. So very sorry to read of your experiences! I’m worn out, wiped out!! Going to call pharmacist in a few minutes….will get back to you. Thank you so much!!

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,

Wendy wrote:

Each body is different,yet how much time did it take your rash to go away?

A long time. It would mostly go away and then come back months later. That happened several times.

Wendy wrote:

It has been a little over a week since dropping the mid day 50mg. When AM dose taken,within 10 min. The lightheadedness begins, another 5 min or so the itching sets in…still itching all over.

Is all that itching from a 50 mg dose taken in the morning? Are you taking that on an empty stomach?

What kind of minocycline are you taking? What do the pills look like, and what is written on them?

Phil

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

[Wendy]

Hi Phil,
Activis, formerly Watson is the brand of the yellow 50 mg capsule taken in early AM with a slice of dry bread. The capsule reads DAN 5694. Yes, it is the AM capsule and most likely taking another 50mg mid day for those 2 weeks+ a couple of days. Very light itching started in Jan when doseage was increased to 150 mg. The intense itching has been the past couple of weeks and the rash/ markings appeared the final night of the 2 weeks+ a couple of days of the 200 mg. a day. Little itching is from the 100mg. at night but then headed to bed w/ 2 1/2 mg. of Valium. W/o AM 50 mg this AM…less itching, yet Tylenol probably has helped, too! took 1/4 of tsp of children’s Benedryl a little while ago…good grief can already feel tiredness!Legs walking in house feel as if going to buckle under me. The PA suggesting the Benedryl has little idea how sensitive I am to drugs period! Would not put self behind wheel of car now….hope this answer is clear…other brand then Activis has made me nauseous. Thanks for reading.
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,

Wendy wrote:

took 1/4 of tsp of children’s Benedryl a little while ago…good grief can already feel tiredness!Legs walking in house feel as if going to buckle under me. The PA suggesting the Benedryl has little idea how sensitive I am to drugs period!

If you take it every day there’s a good chance that you will quickly develop a tolerance to the sedative effects. I started with half a tablet (12.5 mg) taken with breakfast, and increased it to a full tablet after about a week. By the third week I could take a whole tablet (25 mg) and experience very little drowsiness. Now I can take a whole tablet on an empty stomach without any problems.

Phil

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

[Linda L]

When I get a rash/itching on the inner part of my foot it means that I have forgotten to take probiotics. Tea tree oil like the one for a mosquito bite helps me a lot.

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

[Spiffy1]

Please give us an update when you can.

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

[Wendy]

Phil… Have a question… Is the itching caused by internal healing or Combo reaction to mino?
In 10 1/2 months on the minocycline, my body continues to have the weakness, lightheadedness effects that have not gone away. Have my doubts that staying with the Benedryl would improve. For how long have you been taking Benadryl for itching? Have to work on taxes, feel loopy enough and do not want to spend hours per day sleeping…
Thank 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, the mammogram will be next week. Have on my own reduced to 100mg at nite until I know the rash is just a rash….Tis fading a tiny bit. Just sent Phil,a message so you may want to read it.
Thank you so much.
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]

How about the spots on the back of your legs? I feel this is a systemic issue…not a breast issue. I do feel like it is an allergic reaction to something. Because it is fading a bit with a reduced dose it makes me wonder if you …like me…could be allergic to a filler. Or perhaps the minocyclene. I have yet to try it again. I am so afraid I will not be able to take it anymore. I am already allergic to penicillin, cephalosporins, and sulfa. The fact that I have been able to take it for 2 years is a miracle. I am going to get brave and try it. I am also waiting for my Cyrex Array 10 panel to come back. Curious to other foods I may be reacting to. Remember no deodorant or anything the day of your mammogram. Ask for a lead apron and thyroid shield. They will try to talk you out of them but I never let them.

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,

Wendy wrote:

Is the itching caused by internal healing or Combo reaction to mino?

I’m not certain, but I suspect that it is a kind of die-off reaction. Lots of people on antibiotic therapy experience itching, and people with scleroderma tend to be particularly troubled by it, based on what people on here have reported.

Wendy wrote:

In 10 1/2 months on the minocycline, my body continues to have the weakness, lightheadedness effects that have not gone away.

Unfortunately, I suspect that your recovery is likely to be a long, slow process. The reason is that you were on immunosuppressive therapy for several years. As a result, your bacterial load is probably quite high.

Wendy wrote:

For how long have you been taking Benadryl for itching?

For more than a year, but not for itching. I take it for indoor allergies.

Wendy wrote:

Have my doubts that staying with the Benedryl would improve.

Since you were strongly affected by a tiny dose, you probably shouldn’t bother with it — unless you are very patient and can start at a very tiny dose and slowly work your way up to the full dose.

This may be a better option for you: Sarna Sensitive Anti-Itch Lotion

Phil

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

[Wendy]

Phil, cellcept time frame was a total of 24 months with the remissions in between. Not sure how long you think long and slow might be….especially having to be barely functioning with the intermittent lightheadedness/ dizziness/Raynauds. Lowered my dosage again to just 100 mg at night from 22nd to now, rash is gone…mammogram is clear! Now how to again build up to the 50 AM. Had the pulmonary testing on 29th and did not take the night doseage on 28th….quite a difference…no dizziness, some aches stopped, etc….and symptoms have returned rebuilding the dosage. Today starts month 11! Frustrated and worn out. Thanks so much
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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