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Has anyone had extreme itching with Minocycline? I’ve been on it for 3 months and this just started this month. I’m taking 50mg twice daily. I have Diffused Scleroderma, interstitial lung disease, chronic Lyme and Raynaud’s. I feel terrible so far and my body aches so bad. Anyone have this experience? Trying to determine if it’s just my skin maybe loosing so it’s itching or if it’s an allergic reaction? This is my 2nd try with Mino as the first time I felt terrible and after 2 weeks I stopped. I really want to stay on it due to it being antifibrotic. I stopped taking Cellcept after 4 years due to my lungs being stable. They have since gotten slightly worse, so I need this to work. I am scared, hurting and confused. Just wondering if anyone has had previous experiences?
Hi,
Yes, others have definitely experienced that. I don’t have scleroderma, but I also had some itching. The dry air during the winter definitely made it worse. Dr. Trentham, who is retired now, thought that the itching might be part of the healing process.
I suspect that the itching is probably a type of allergic reaction, but not to the minocycline. Rather, it may be a response (one response) of the immune system to the dead and dying bacteria.
For body aches, like joint pain and sore muscles, I took an NSAID (ibuprofen) for a few years. However, lately I’ve been using MSM as a very safe alternative to NSAIDs. Doing so allows me to take etodolac (Lodine), an NSAID, occasionally instead of every day.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil, thank you for your reply. I get that the skin would be dry after all it is an acne medicine. I think your right it might be an allergic reaction. It is deep itching from within like I literally had to take my boots off at a stop light and itch them and it still didn’t stop. Mostly my feet and hands, but all over really. I get extremely sob and lethargic too. More so than usual. I feel so alone as my provider that gives me the mino is basically mia in this whole process. She has no experience with a scleroderma patient and is only doing what I ask her to. She sees me every 4 weeks and mostly discuss my thyroid meds, which my levels are still not right. If I go off the mino my only option is to try doxycycline or go back in the Cellcept which I was on for 4 years prior. I am currently taking azithromycin on the days I’m off mino because I’ve found it helps with this phlegm I have that makes me cough constantly. I have already broke 2 ribs from coughing and the azithromycin helps tremendously! I suppose I could continue the mino and take Benadryl, but wondering if I’m doing damage if I’m truly allergic??
Hi DMW;
I have been on AP for over 20 years and have experienced just about everything there is.Can’t chat now as I am running out the door.Itching from head to toe when my skin was hardening and then the same as it loosened.Doc told me it was caused by the nerves in the skin.Pressure on them when tightening but they eventually got used to it.The loosening gave them wiggle room so it started all over again.Chat later.I forgot to mention that a former member who had scleroderma wrote that he got some relief from a lotion called Sarna. There are several kinds of Sarna lotion that you can learn about at sarnalotion.com.
These older discussions are likely to be helpful:
https://www.roadback.org/forums/topic/help-with-itching/
https://www.roadback.org/forums/topic/dosage-amount-of-minocycline/Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi there,
Have you considered a telemed appt with an AP doc to consult on this issue? Perhaps it may help to untangle your concerns? Dr. F., in AZ, is an experienced AP doc who came out of retirement to offer telemed AP consults during the pandemic, for instance.
The itching that can accompany SD has been reported numerous times on the forum, and while it’s sensible to rule out allergy, it seems that it’s part of the neuro symptoms SDers have shared due to skin tightening/loosening, as Lynne shared above.
There are some commonly used supplements among rheumatic patients for lung protection and to help break up scar tissue that you might like to research, including N-AC (n-acetylcysteine) and systemic enzymes, like serapeptase and nattokinase.
Phil, thanks for all the info and links. They were really helpful. Where can I get the MSM? Lynne, it would be great to hear more of your experiences. Maz, can you give me Dr F in AZ. contact info. I would like to see if I could talk to him. Thank you all for your feedback. Much appreciated!
Phil, Maz, can you give me Dr F in AZ. contact info. I would like to see if I could talk to him.
Sure thing! Will send you a PM (private message).
Hi DMW,
The intractable itching of scleroderma can drive you mad. Scratching is almost useless – more a psychological comfort – but I have found sunburn sprays with lidocaine can help. Sometimes I used Benadryl but only at bedtime as I can’t fight the drowsiness it causes during the daytime. My itching problems didn’t correlate with tightening or loosening of skin but, since so much of scleroderma involves the skin, I felt it could be the minocycline’s positive effects on the skin or, possibly MAST cell activation which sometimes accompanies scleroderma. In any event, it does get better in time.Many scleroderma AP users stay on Cellcept to protect the lungs from further fibrosis until it’s stabilized to the point the doctor feels the anti-fibrotic properties of minocycline are enough. You don’t want to risk progression as I’m not sure existing lung fibrosis can be reversed although some on AP have found PFT scores improved. Do a search for Cellcept in the search box and you’ll find posts from sclero AP users who used Cellcept as a bridge during the transition to AP. My pulmonologist was pleased to find I was also using Azithromycin along with mino as he prescribed zith to his cystic fibrosis patients for its lung-protective properties. The combination of minocycline and Azithromycin should serve you well but it’s worth talking to your doctor about restarting Cellcept in the interim.
Kelly
(Hi Maz, Lynne, Phil!)Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsThank you for your encouragement. I will talk to my pulmonologist and rheumatologist in April when I have my pft and ct scan. I did slightly progress at my last ones in Nov, but she didn’t suggest going back on at that time. She did mention Ofev but not now I guess. I’m going to start back up with the Minocycline on Monday and I’m already on azithromycin since Jan 1st. I definitely see a difference with my coughing and phlegm when I miss doses of azithromycin, so I know it’s working. I was just worried about the mino reaction. Thanks again!!
Always welcome 💖
Keeping my fingers crossed you do well with the mino, too.
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
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