Scared — I found new patches on Ryan

[luvmywonderfulkids]

Ryan has been on AP since May of last year and in June we went and saw Dr. S for 5 days of clindy IV's. He is also on ceftin and flagyl for lyme. A few days ago I noticed 2 small white patches on the back of his right knee. Sure looks like SD patches to me and I am so scared. How can this be? Has anyone else on AP experienced new patches after so much time? I don't know what to do and any help would be appreciated. Is it better to pulse the mino at this point? It seems that all the new meds might have brought this on — does that seem possible?

Sue — Ryan's Mom

[Parisa]

Sue,

Sorry, you are having this scare.  Is he on the generic minocin then?

Parisa

[luvmywonderfulkids]

Yes, it is generic — do you think we should see if we can get the real minocin? We started pulsing it after asking Dr. S what he thought — just to see if that will help.

[Parisa]

Some people seem to do fine with the generic, others don't.  If it looks like he's still getting patches, I would seriously look into the name brand.

[luvmywonderfulkids]

Does anyone have any idea if the Clindy IV's could have brought out the new patches. I am so very worried and I don't know what to do. This is Ryan's current protocol:

Current daily protocol: 100mg mino + 500mg Ceftin + 1,000,000u Nystatin, all BID + 250mg Flagyl TID + supplements

But this week week we started pulsing the mino to see if there would be any difference. Any words of wisdom/ideas/suggestions would really, really be appreciated. Thank you.

Sue — Ryan's Mom

[richie]

Hi—firstly dont be discouraged –new symptoms popped up with me for at least two years after starting minocin –I am not a doctor but I have faced many problems over the first few years and have overcome them all —
Step one

I personally would not cut back the minocycline now –this makes no sense to me to cut the dose when there is something going on —

I would definitely look to get the brand –if cost prohibitive in the US -try Canada

I would check with your local pharmacist to make certain there is no interaction between the meds being taken

This is a long term disease with problems sometimes arising –very often just keeping a steady course without changing anything is the way to go —
richie

 

[Maz]

[user=16]richie[/user] wrote:

I personally would not cut back the minocycline now –this makes no sense to me to cut the dose when there is something going on —

I would definitely look to get the brand –if cost prohibitive in the US -try Canada

 

Hi Sue,

Just came across your post and I had the same thoughts as Richie and Parisa…so I'll third those.

Any changes in protocol can elicit herxing and worsening of existing symptoms for a while and Ryan has had some big changes to his protocol, including IV clindy and adding ceftin and flagyl to his mino. As he has Lyme, there may be some herxing and it won't necessarily be the kind of herxing RAers talk about, but worsening of his own unique symptom complex. As described in the following article on the main site, folk may experience a worsening or breakout of new skin lesions:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

“Jarisch-Herxheimer Reaction

Although RA is discussed in particular, patients with other inflammatory rheumatic diseases will recognize many issues mentioned here.

The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms.”

I can understand why you'd want to lower Ryan's mino dose as he's on the other two abx, as well, now, but the other two abx are intended to target his particular pathogen load…a good thing….but minocycyline also has the added benefit of modulating disease symptoms, in addition to its anti-bacterial props. Therefore, if it were me, I'd stay on the Harvard Protocol until I was well into remission from scleroderma for a good period of time before considering loweing to a pulsed dose. Of course, that is just me, but unless a person can't handle the higher dosing (too much inflam) then I'd stick with the higher dose. With SD, I'd also go for the brand…not because generics don't work….but because I'd want to ensure optimal results as quickly as possible without waiting to figure out if a particular generic was as effective as another. I know Minocin can be cost-prohibitive, but $165 for 100 count of Steifel brand mino from Canada isn't as bad as the cost for brand Minocin here in the US, which is about 5 or 6 times more expensive. Some folk can and do get the US Wyeth/Triax brand covered by insurance if they plead the reflux card, which isn't as far-fetched as it may seem for those with SD.

Hang in there, Sue…Richie has been around the block with SD and knows what he's talking about from personal experience. I'm just seconding that experience vicariously, going by what others have shared in the past here.

Peace, Maz

[luvmywonderfulkids]

Thank you, thank you, thank you — I feel so much better. I have been so scared that maybe we made the wrong choice. Ryan is really feeling quite good although his feet seem to be bothering him more when he stands a lot.

Sue

[Kim]

[user=1274]luvmywonderfulkids[/user] wrote:

Ryan has been on AP since May of last year and in June we went and saw Dr. S for 5 days of clindy IV's. He is also on ceftin and flagyl for lyme. A few days ago I noticed 2 small white patches on the back of his right knee. Sure looks like SD patches to me and I am so scared. How can this be? Has anyone else on AP experienced new patches after so much time? I don't know what to do and any help would be appreciated. Is it better to pulse the mino at this point? It seems that all the new meds might have brought this on — does that seem possible?

Sue — Ryan's Mom

Sue, Sorry I'm late jumping in here, but I wanted to add that early on when I was still trying to get a diagnosis I had a large patch around my kneecap that had lost all pigment, was totally white with very thin skin.  It was like the tissue underneath that patch had just dissolved.  Not one doctor could explain it, but now 5 years later it's normal.  The bizarre symptoms in this disease can make you crazy.  As long as Ryan is feeling better, I'd go with that and keep on course. 😉

Take care…..kim

[luvmywonderfulkids]

Thanks Kim. We have put him back on mino 2x/day and I am going to check into getting a script for minocin vs. generic. I was just so worried that a new one would show up after all this time. The other three (ankle, top of  foot and chest) are almost gone so finding a brand new one was very concerning.

Did Dr. C put you on ceftin for a period of time and did you notice any results from that? Ryan has been on it since June and we started flagyl as well so we were thinking of removing the ceftin. He said to keep him on each medication for a month and then move on to the next.

Sue

[Kim]

[user=1274]luvmywonderfulkids[/user] wrote:

Thanks Kim. We have put him back on mino 2x/day and I am going to check into getting a script for minocin vs. generic. I was just so worried that a new one would show up after all this time. The other three (ankle, top of  foot and chest) are almost gone so finding a brand new one was very concerning.

Did Dr. C put you on ceftin for a period of time and did you notice any results from that? Ryan has been on it since June and we started flagyl as well so we were thinking of removing the ceftin. He said to keep him on each medication for a month and then move on to the next.

Sue

Yes, I've been through Dr. C.'s whole list, including Ceftin.  It's really irrelevant what specific antibiotic worked best for me because we all have our own custom mixed bag of infections which may require a different protocol for Ryan.  Dr. C. says if it's still working after a month to continue; if not, move on down the list.

Thrilled to hear things seem to be heading in the right direction and let that poor boy get back to more normal things. 😕

Take care…..kim

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