Herx reaction

[Lisa35]

How long did it take before you had an herx symptom? Do you find capsules or tablets better? I’m hoping this will work, first week, pray for me please? BTW Crest scleroderma

[Lynne G.SD]

Hi Lisa;
I also have SD with a side dish of Lyme.Some SDers such as Richie never have a herx probably because they do not have an infectious component to the disease.He knows that benzene caused his SD.I,on the other hand had Lyme and 2 micoplasmas and herxed for the best part of 3 years if I total up all the days.It would happen every time I would change antibiotic or raise the dosage.I am in remission for a good 15 years but it took almost 4 to get there

[Kimber3]

Hi lisa,
I too just started AP. I am just finishing my first month. I am definitely herxing.
My muscles are very exhausted. Have a strange rash on my calves. See doctor next week. Anxious to talk with him.
I can make it through a day of work but collapse when I get home.
I was diagnosed with scleroderma 1.5 years ago. Symptoms for six years.
I will pray for you!

[Lisa35]

Thanks Lynne for the info. It’s actually my daughter who have this awful disease. Her symptoms are very mild (Raynaud and hardening of both hands). This is the 3rd week. I guess next we will check for Lyme. Kimber3 I wish the best. She was dx. 3 months ago but symptoms for 4 years. Are you taking capsules or tablets?

[richie]

It is not important if a person with scleroderma herxes or not -Early on its all about how a person feels –such as -did fatigue improve –These days since only a generic is available the main issue is the daily dose –THe other important thing is to stay with the same mfg of minocycline -Pharmacists will tend to give you whatever is on hand –you have to specify you want the same mfg every renewal –Also in my opinion something should be taken for the Raynauds –I was given a calcium channel blocker fairly early on and things improved in about 10 days –Good luck –richie

[Lisa35]

Thanks Richie. Her Rheumatologist felt her Raynauds was to mild to start her on calicum channel blockers. I did request pharmacy to give the same brand, but her AP doctor started her on a low dose Minocycline 50mg twice daily. She never complains about anything so it is really hard to know if it’s working.

[richie]

50 mg 2x daily is a good starting point –hope the goal is 100mg 2x daily —

[JeffN]

My initial dosage was 100mg 2x daily and I did herx. Kimber3 my herx also began with a rash on my calves. It was uncomfortable but from my reading it is part of the process for some. I just hung in there, sometimes it was vexing but I got through it and was well worth the effort. IIRC my herx began around three weeks into AP.

[Kimber3]

Has anyone experienced severe swelling in the lower legs and tightness in chest and back? Does this sound like herxing or part of scleroderma progressing??
Or reaction to the minocycline? Thank you

[richie]

When you say tightness –is it a feeling or has the skin actually tightened on chest and back –also normal color ???? Scleroderma is difficult –when taking minocycline or whatever -as time goes along some symptoms will abate but others may come out –symptoms do not stop all together and not return –its a long process –I am certainly not a doctor but based on my personal experiences -its part of the disease —How long are you taking minocycline for scleroderma ?

[Kimber3]

Thank you Richie for responding. I have been on Mino for a month and a half.
Everything feels tight. Inside and out. No significant color change that I can see. I appreciate your input! I was leaning more towards the same conclusion.

[Lisa35]

Kimber3 are these new symptoms? My daughter toes and fingers swells alot. I usually add apple cider vinegar to her tea for swelling. Have you change your diet at all?

[Lynne G.SD]

Hi my little newbies;
I think that in over 25 years with this disease I have talked to hundreds of people on AP sites and have things pretty well figured out.It helps that I have many years in medicine,mostly animal, and know how things work.

RBFV Reminder:

Community Forum Disclaimer and Guidelines

“The personal opinions expressed on this community forum do not necessarily reflect those of the Foundation. The Foundation does NOT engage in medical advice. It provides information on and advocates for the use of antibiotic protocols to treat rheumatic diseases, prescribed by licensed medical doctors.

It seems like this disease still progresses for months even though you are on AP but don’t panic.It takes time for the meds to take effect,cell by cell.If you look at any traditional med such as MTX,Plaquenil,Cellcept,none of them do anything for several months either.
Whether you take antibiotics to kill micos/bacteria or take it to slowdown and stop Interlukins and Transfer Growth Factor 1B it is the same thing when it comes to results.They will happen but it is you who have to figure out the best protocol unless you have really good AP doctors.

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