Aknemin vs Generic Watson + my experience so far

[kwlile]

I’m mostly a lurker on this forum, but very appreciative of all the information supplied on here. Back in January, 2012, my rheumy clinicially diagnosed me with Systemic Scleroderma, based on the changes in my skin on the backs of my hands, which had thickened and tightened. My symptoms also include/have included subcutaneous tightening in various parts of my legs and arms, neck/face area, tightness, swelling and burning in my hands and burning/tenderness in my feet, as well as Raynauds in my hands and feet. I had one finger ulcer last summer due to an ischemic finger from crushing it in a drawer, with no tissue loss.
My rheumy could only offer me Methotextrate, and I politely said “no thank you”. So I found a nurse practioner at a functional wellness clinic 2 1/2 hours away, (who happens to use AP on herself for RA), who has administered two rounds of IV Clindamycin, and prescribed 100 mg. 2 X day of Mincocycline. We have been consulting some with Dr. S as well.
After reading many accounts of how Minocin was necessary over the generic version, and reading that Aknemin had worked well for some, I ordered it from an online pharmacy in Canada. Right after ordering it, I spoke to Dr. S in Iowa, who told me that the generics worked just as well, but since I had already ordered it, I decided to try it. To make a long story a little shorter, I’ve experimented with using the Aknemin as well as the Generic Watson, and have found that for me, whenever I use the Aknemin, I start to regress. My skin begins tightening in new places, and gets worse in places where it was already tight. Within a week or two of getting back on the Watson generic, I experience significant loosening of my skin, and also have noticed loosening after my IVs. But I think I would be further along in my progress right now had I taken the generic Watson the entire time.
I am actually doing pretty well right now – within the last week, my thigh area and backs of my knees have loosened to the degree that it feels pretty normal putting on pants, whereas before, it was painful and quite a struggle. I have experienced significant loosening in my arms as well.
Nevertheless, I am going to see Dr. F in Riverside in early July for a full work up, so that he can take over my treatment program and consult with my Nurse Practioner here. I want to make sure I’m doing everything possible to reverse this disease before it gets any worse.
Unfortunately, my husband, who is a physician, thinks AP is equivalent to snake oil, so his constant battle with me has been a bit difficult to bare at times, to say the least. But I am staying true to myself and my body, and will do what I feel is best for me. I’m sure that once I’m in remission, he will most likely say I never had SD to begin with (because he’s still in a bit of denial right now that I have it) or find some way to repudiate the fact that AP did it, but I won’t care, as long as the symptoms are gone!! 😛

[Maz]

@kwlile wrote:

Unfortunately, my husband, who is a physician, thinks AP is equivalent to snake oil, so his constant battle with me has been a bit difficult to bare at times, to say the least. But I am staying true to myself and my body, and will do what I feel is best for me. I’m sure that once I’m in remission, he will most likely say I never had SD to begin with (because he’s still in a bit of denial right now that I have it) or find some way to repudiate the fact that AP did it, but I won’t care, as long as the symptoms are gone!! 😛

Wow, Kwlile, you’re a courageous woman! I felt so inspired by your desire to get well, whatever it takes. Thanks so much for sharing your story here and very glad you came out of lurker status. Your experience with the Aknemin brand of Mino as opposed to the Watson generic is also important info. Although everyone’s experience is probably somewhat unique in this context, for someone else who is struggling and wondering what is working or not, this may be critical info to them.

So wonderful to hear how much reversal in symptoms you’re experiencing. Your nurse practitioner sounds wonderful…would it be a certain special lady out in CO by any chance ❓

There is a great story in The New Arthritis Breakthough of a lady who was dx’d with SD by a physician and, when she went back to show him her progress, he obviously didn’t remember her and said that whoever dx’d her in the first place must have been wrong! She took great pleasure in telling him that he was the one who had dx’d her.

A warm welcome to you and hope you come back and let us know how your Dr. F. appt goes!

[Parisa]

Kwlile,

Thank you for taking the time to post your experience with Aknemin. It could be the helpful information that someone needs to turn around what seems to be an impossible situation.

I’m sorry your husband isn’t supportive. It’s hard enough to battle a disease like scleroderma but to have someone doubt your condition and treatment choices is very difficult. You are obviously very determined and I’m sure you will be posting your remission story in the future.

[kwlile]

Thank you Maz and Parisa for welcoming me to the board! It has been difficult fighting with my husband about my treatment while I’m trying to battle this terrible disease. Those who have supportive spouses are very fortunate, because it is difficult not being able to really talk to your own spouse about how you feel.
Maz, my nurse practioner is a very special lady in Golden, Colorado- initials LH. Is that who you are thinking about?

I will let you know how my appt with Dr. F goes – I am very excited about it! I don’t think my former rhuemy had much experience with SD and am anxious to hear what he has to say.

Cheers-
Kristin

[Maz]

@kwlile wrote:

Thank you Maz and Parisa for welcoming me to the board! It has been difficult fighting with my husband about my treatment while I’m trying to battle this terrible disease. Those who have supportive spouses are very fortunate, because it is difficult not being able to really talk to your own spouse about how you feel.
Maz, my nurse practioner is a very special lady in Golden, Colorado- initials LH. Is that who you are thinking about?

I will let you know how my appt with Dr. F goes – I am very excited about it! I don’t think my former rhuemy had much experience with SD and am anxious to hear what he has to say.

Cheers-
Kristin

Kristin, so sorry to hear you’re having trouble getting your DH on board with your treatment choice. It can be hard for spouses to understand all the complex feeling we are feeling as the rheumatic sufferer. It’s scary for them, too. My husband is the self-admitted kind of guy who just goes to the doc and takes whatever the doc says without question. So, for him, it’s been a real journey watching me research everything to the endth degree, but today he actually asks me what I think about different health issues, as he’s seen me get better over time. In my first year, I asked him if he’d support me, even if he didn’t understand my choices, and when he said yes, I asked him to read the Henry Scammell book. After he read it (and he didn’t understand a lot, so it gave us a chance to discuss it), he could see why I wanted to go this route, even if he wouldn’t choose it, himself. Since then, he acts as a kind of devil’s advocate when I want to try something new…supporting me and interested, while also giving me other angles to look at with any given therapy. It was challenging in the beginning, though, so I can empathize with your feelings right now, as I’m sure many of here can. In case you haven’t found these links on the main website yet, there are some articles on coping that may also help to read through:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/9.html

Yes, I know your nurse practitioner and she is wonderful. We’ve connected a number of times and I know she is dedicated to helping her rheumatic patients. You’ve found a real gem there. 🙂

Very excited to hear about your trip to see Dr. F, too. Please come back and let us know how you get on! Sending all good wishes for your trip and Riverside experience.

[mary77]

I am hoping either Kristin or Maz could PM me the name and number for the wonderful nurse practitioner in Golden, CO. I am always looking for a supportive medical person near me…I have RA (Lyme induced). Thanks for any help!
Mary

[Maz]

@mary77 wrote:

I am hoping either Kristin or Maz could PM me the name and number for the wonderful nurse practitioner in Golden, CO.

Hi Mary!

Will send a PM with this NP’s contact info. 🙂

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