Question for Susan/SD

[GayG]

Susan, I recently read a post where you had reviewed an article written by Dr. Mayes on “Minocycline is not effective in systemic sclerosis”…..can you tell me how I can get a copy to review?  thks! Gay

 

[SusanSD]

Okay I think I have figured out how you can get the article for free with some time and effort, I originally got it through my university's library databases.

Go to this link: http://www.medical-journals.com/index.php

Register (free), then when you're logged in, click on USA and Canada up on top. You'll see areas of medical practice and their related journals. Scroll down to Rheumatology. There you'll find Arthritis and Rheumatism. Look for past issues, 2004, February, Vol. 50 (issue no. 2), pages 553-557.

Pay attention to Table 2's data and remember that the lower the Modified Rodnan skin thickness score, the better (softer).

Hope this works for you – let me know if it doesn't.

[GayG]

Thank you Susan, got it and am reading it now….I have an appt. with her at the end of this month (March 28th)..she had mentioned to me before that she had done a study that showed that Minocin didn't work but I've never seen the article before ….

Oh well, all I can say is the proof is in the pudding and the skin on my upper thighs is starting to loosen up and on my cheeks and I'm hoping the rest will follow…and I haven't taken a diuretic in quite a while now so don't think I need those any more and am back to traveling again for the first time in over a year (will be gone next week for spring break)…so I will just have those improvements to show and can only say to her …..You will never convince me that this doesn't work!  thanks! Gay

 

[SusanSD]

I didn't realize you were seeing Mayes and she's okay with minocycline (after doing this study)?

I am glad you will be showing her real clinical improvements because she obviously didn't want to acknowledge that the minocycline was helping in this study. Here is just a sample of my critique of her study:

Point 3:  Using another study?s data for this study?s control group is unfortunate
 
            A serious methodological flaw of this study was its choice of using the D-Penicillamine (D-Pen) study?s data for this study?s control group. D-Penicillamine was once thought to help skin soften in systemic sclerosis. In the D-Pen trial, they compared low dose (control) to high dose (experimental) D-Pen and found no significant differences between the two groups. There very well could have been improved skin scores as a result of the D-Pen, albeit modest improvements, and therefore, any improvements from the minocycline completers would be masked by comparing to the D-Pen completers.  
            The fact that the minocycline group?s (ITT and subgroups) MRSS skin scores were significantly worse from the D-Pen?s skin scores (p[/i] = .005) at the beginning of the study underscores our point that the D-Pen group was not equivalent to the minocycline group. Merely using change scores within the groups does not negate the fact that the two groups differed on an important variable, the primary outcome measure.
            In fact, a better control group would have been the 14 minocycline noncompleters. Unfortunately, the researchers failed to realize this and did not report any analyses. However, when we examine their data, we find that the minocycline completers? skin scores dramatically improved with a mean change of -7.3 (SD = 3.96), whereas the minocycline noncompleters? change scores are -0.2 (SD = 8.39). A t-test reveals that the change in scores from the minocycline completers is significantly better than the change scores from the minocycline noncompleters (p[/i] = .0043)[/b]. Furthermore, when we calculate an effect size to determine the size of difference, we obtain Cohen?s d[/i] = 1.16, which is deemed a very large effect, and interpreted to mean an easily visible difference [/b]by Cohen (1988).
 
Point 4: Researchers overlooked >30% MRSS improvement in minocycline completers
 
            The researchers originally wanted to determine if minocycline would improve skin thickness by ? 30%, ?a level of improvement unlikely to occur in the natural history of the disease as determined by recent controlled trials? (Mayes et al., p. 553). However, they only compared the skin scores of the 31 minocycline participants (including noncompleters) to the skin scores of the 68 D-Pen participants.
To investigate the effect of minocycline for one year on skin thickness, you could compare the 17 minocycline completers? mean MRSS at the beginning of the study to their mean MRSS one year later. When we look at those numbers in Table 2 (p. 555), we find the unit change in MRSS for the minocycline completers is -7.3 (original MRSS was 21.9 and MRSS at end of study was 14.6). Not only is this change statistically significant (p [/i]< .0001) and overlooked by the researchers, this means that for those who took minocycline daily for a year, they had on average, a[/b] 33% improvement in skin thickness[/b], which as the researchers have already pointed out, is unlikely to occur naturally.

[GayG]

Well that is very interesting and not surprising…she doesn't promote mino at all…I only went to see her because my rheumatologist here really wanted me to…..I told her I was on minocin and she knew she wasn't going to talk me out of it…..she told me about this study that she did and it proved that mino wasn't effective in SD..but now I see the other side to the story….she recommended that I take cellcept and prednisone…Prednisone I wouldn't touch with a 10 foot pole…I did get on cellcept but had to get off after getting that nasty upper respiratory infection…got back on then had to get off again because I got a “white tongue” (thrush I guess because I got some bad probiotics that didn't work (have better ones now, I didn't know how important it was that they be intera coated).  SO I don't know if I'm going back on the cellcept or not….I'm starting to improve so I haven't decided yet…I hope she doesn't claim my improvement is due to the cellcept…if she does I'll have to ask then why isn't cellcept alone saving any patients?  Gay

[Cheryl F]

Gay,

You are not the only patient of Dr. M on Minocin, I know of at least five now including you.  One that I know of gets the RX from her dentist.

Cheryl

[GayG]

That doesn't surprise me at all, she has a lot of knowledge about SD adn it makes my Dr. feel a lot better if I see her too….I guess she just toerates us, that's probably why she told me “I know I'm not going to be able to talk you out of taking minocin”….I've talked to the patient that you're referring to that gets her meds from the dentist and she loves going to her.  

[marg]

Susan, stats was my worst course in undergrad. days. This is just to say I am grateful and glad that someone capable is analysing this data. I believe this kind of calm, clinical work will benefit the cause! Thanks!!

[Cheryl F]

I did a search to find this post yesterday so I could send it on to an individual who is considering AP for a diagnosis of SD. This person saw one of the national SD specialists and asked about AP. They were told that AP was proven
to be no more effective than placebo. So I sent Susan's analysis for their consideration. It is just so maddening that these docs say such things. If you even barely read the study, you can see, THERE WAS NO PLACEBO GROUP! They will say anything to stop people from considering AP.

I thought some of our newer partipants might want to see this thread.

Cheryl

[Cheryl F]

I did a search to find this post yesterday so I could send it on to an individual who is considering AP for a diagnosis of SD. This person saw one of the national SD specialists and asked about AP. They were told that AP was proven
to be no more effective than placebo. So I sent Susan's analysis for their consideration. It is just so maddening that these docs say such things. If you even barely read the study, you can see, THERE WAS NO PLACEBO GROUP! They will say anything to stop people from considering AP.

I thought some of our newer partipants might want to see this thread.

Cheryl

[Randy]

Gay,

If I recall, you sent out a post not long ago that said you were doing great on AP, etc, etc (I guess I'll have to relook at it).  I hope you are still doing well and getting better every day.

For those of us who are some months behind you, can you please provide an update on how you are doing?  And why are you going on cellcept now?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Cheryl F]

Randy,

Here is the link to Gay's recent update, she is doing wonderful!

http://www.rbfbb.org/view_topic.php?id=1142&forum_id=1&jump_to=8727#p8727

 

[Cheryl F]

[user=223]Randy[/user] wrote:

 And why are you going on cellcept now?

Randy,

If you look further up in this thread, you see that Gay said she did Cellcept for a bit, I am pretty sure that was over a year ago, not now.  She mentions that she went off it. 

Cheryl

[Randy]

Cheryl,

Thanks for the link to Gay's story.  I had just finished reading it, and you're right, Gay is doing great!

Her story about rafting down the Guadalupe reminds me of doing the same thing during my younger bachelor days when I got set up to go canoeing with a blind date. Yes, a word to the wise – do NOT go canoeing with some one on a blind date.

Basically, we were totally out of synch in that canoe and as a result we weren't getting along very well.  Solely by luck we too, made it through all the “rapids” until the very last ripple. Then we capsized!  We both rolled around a bit trying to get under control and get out feet under us. Finally, further downstream, she stood up, as the river was only about two feet deep at that point.  Needless to say, she was dazed. She also had no idea that her bikini top was off and no where to be found….for a while.  Well, she was pretty scratched up, as you can imagine.  To make a long story short,  the blind date turned out to be a pretty good time for all concerned.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[GayG]

Randy, thank you so much for that bllind date story….got a good laugh out of that…..and yes I did try cellcept back when I was really sick…..during that time I had two of the worst upper respiratory infections ever (I was so sick with those upper respiratory infections….that was the first time I actually cried since all of this started….SO I decided to get off of it and to not try it again because I was starting to see improvements without it…..AND THank you to Cheryl for sharing my story with you.,…..I am doing terrific….I still have some skin involvement on my lower arms and fingers but if all keeps going like it is that will be the next to start softening up, everything else pretty much has…still a little bit on my upper and lower legs but that's getting better too…..I've never felt better in my life…but of course I'm taking better care of myself too…I eat better and I exercise a lot (walking and I use the workout machines at the gym)….I've also noticed that slowly over time my pulse rate is returning to normal…..normal pulse rate now is in the high 70's to mid 80's and with exercise it gets in the 90's…..which is a huge improvement from what it was.  I really hope to get off of at least the Cardia someday…they probably won't ever let me get off the Lisinopril but if I can improve enough to get off the Cardia that would be great.  I take those to control blood pressure and heart rate that was all cause by the SD, I never had high blood pressure before….

I leave Monday to drive to Houston…I have an appointment with Dr. M there (she is a scleroderma research specialist from what I was told and I guess she's devoted her career to finding a cure).  She tells me that these remissions are spontaneous and would have happened anyway but when I see her I'm going to have to ask her “then how do you explain that I started improving “exactly” when I was told that I would (around 6 mos) and just got better and better from there (just like I was told it would happen)….I was also told it could take up to two years to get a complete remission and it looks like that's going to be right on time too…..AND I'm going to ask her “if I were your only child would you treat me then”?…….I'm also going to tell her “what does it hurt to at least offer Minocin, you don't have ANYTHING else to offer in it's place, not one damn thing so what would it hurt..it saved my life and it will save someone else”…. ….It probably won't do any good but at least I will be able to get that off my chest…..I won't be seeing her anymore after this anyway….I'm only going this time because I want her to see how far I've come since the last time I saw her and I'm curious to see what she'll say…..Blessing and healing…..it's a long road back for sure but SO worth it…..Gay

 

 

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