Help – Return of SD

[McManus]

Hello All,

I was diagnosed with diffuse scleroderma and raynauds back in 2000.  I started AP in January 2001 at 100 mgs x 2 per day (Minocin) and over time it worked. For the past couple of years, I have had no SD symptoms, only raynauds.  My rheumy suggested I taper off and take only 100 per day, which I did.  I was fine.  Then I decided I was “well” and stopped taking it altogether.  Dumb, I know. :headbang: Anyway, the skin tightening returned, so I went back on Minocin a couple of months ago- and it's not helping!  Tightening is spreading to belly, arms, shoulders, neck and face. What to do?  Try another antibiotic?  Suggestions welcome!  Thank you all so much.  Blessing to all.

Judy McManus

[JeffN]

I have spoken with a person that went through a similar process. She reduced dosage once and was OK and then reduced or stopped mino altogether. Her SD came back and she got no result when she began again with mino. IIRC she had to add Embrel along with the mino and when she started to respond she was able to wean off the embrel. Her advise to me was “don't monkey with your dosage”. At my last check up my doc said I could reduce to 100mg a day. My current thinking was to continue my present dosage until Jan, at that point I will have been on four years, and then perhaps cut back to 100mg once a day. I am on the fence about this entire issue as I don't want to or have the time to go through this again.  

 

There may be some threads here in the archives about this issue.

[McManus]

Thanks, Jeff.  I have an appointment with the rheum in Sept so I'm gathering “options.”  I will add this idea to the list.  100 mgs 5 days a week was working for me just fine- wish I had stayed with it. Will check out the archives too.

Many thanks and all the best.

[JeffN]

I'm glad to know that the 100mg held things in check for you. I am tempted to reduce to 100mg some time in the future. Presently my thinking is to try a reduction and then just stick that out. I'm 60 now and I am not sure what to do dosage wise. If I were 40 and was feeling well I would probably be tempted to try to get off entirely. At my age I think I will just continue at my present dose or try to reduce to the 100mg a day but not go off entirely. I am not going to decide until at least Jan. As I said I don't want to go back!

Good luck with your quest.

[Steve201]

well..after 10yrs on this stuff..(aka tetracycline)…I'm finally wheening off of it…so…if this stuff comes back…i'll jump back on it….keep us posted….

 

 

Steve

[richie]

Hi-I take 200 mg daily of minocin for over 11 years now -this is after a complete remission after year 6 –Reason ?-over the course of these 11 years and being on this board and networking with folks who have SD –the rate of relapse for people stopping the minocin is frightening –far too many relapses –I dont intend to get off minocin or even reduce the dose —no problems for me being on it —Take enough probiotic and get liver and kidneys blood work yearly —the major problem with a relapse is it is extremely difficult to reverse the progression the second time around !!!!!!! I know personally of four cases where the outcome was the worst outcome !!!!–Makes absolutely no sense to me to “wean” or stop the minocin —
richie

[richie]

Hi–Tightening around the stomach is an indicator of truncal scleroderma which is a marker for full blown diffuse scleroderma and generally a marker for potential kidney problems –I would suggest you not wait until Sept rather try and find someone to administer ivs as mentioned in the RBF protocols first then follow with 200 mgs daily of minocin
Richie

[Parisa]

Judy,

Maybe you should see Dr. S in Ida Grove.  Maybe some IV clindamycin will get the ball rolling again.

[Kim]

Hi Judy,

I totally agree with all of the above.  Hit it hard with the full arsenal…..IVs, maybe adding in additional abx, such as Zithromycin.  If you haven't yet, I've found infrared sauna and Neprinol/Serrakor-NK to be invaluable in helping thin blood and improve circulation for my SD.

Wishing you the best, Judy.

Take care…..kim

[mkbeeliever]

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

Hi-I take 200 mg daily of minocin for over 11 years now -this is after a complete remission after year 6 –Reason ?-over the course of these 11 years and being on this board and networking with folks who have SD –the rate of relapse for people stopping the minocin is frightening –far too many relapses –I dont intend to get off minocin or even reduce the dose —no problems for me being on it —Take enough probiotic and get liver and kidneys blood work yearly —the major problem with a relapse is it is extremely difficult to reverse the progression the second time around !!!!!!! I know personally of four cases where the outcome was the worst outcome !!!!–Makes absolutely no sense to me to “wean” or stop the minocin —
richie

Thanks for this post Richie…Good to know you've been on the full dose for so long.  I won't let my mom stop her mino or go down on her dose.  EVER.  PERIOD.  END OF DISCUSSION.

Regarding the “truncal scleroderma” – Great information!  As for my mom's experience, her trunk did not and has not ever had any skin tightening and she had scleroderma renal crisis.  I know everyone is different and presents differently, but I just wanted to throw that out there just as a FYI.  Please monitor your blood pressure SD people, it's so very important!  If your BP is high (top number especially) get to your dr. ASAP.  Get on an ACE Inhibitor.  Am I prescribing?  Well, sort of I am.  Out of care for all of you!  If only we had known.

Blessings to all,
Michelle

[McManus]

At the mo, my blood work is normal and BP and gastro issues fine.  However, I know first hand how progressive this disease can be, so no messing around.  I'm working to get my appointment asap and will take in your suggestions re IVs, etc.  I really appreciate you guys!!!

P.S. Where do you go to find an infrared sauna?  Did you buy one? Nothing has ever really helped my Raynaud's.

cheers.

 

[Tintap]

Judy
   I was on minocin from 2004 ( which is when I first got RA). I went into remission in the first half of 2005. I was in remission and on mino for a while.
Then in July 2007 I conceived my 2nd child and hence went off mino. I was fine during the pregnancy – but the disease returned with a vengeance after delivery. I went back on mino – but so far no results ( and its been 2 years now).

I am still exploring options – so I guess this means – dont stop something which is helping your disease.

Tintap

[lynnie_sydney]

[user=418]McManus[/user] wrote:

P.S. Where do you go to find an infrared sauna?  Did you buy one? Nothing has ever really helped my Raynaud's.

cheers.

 

Judy – there have been lots of discussions on infrared saunas and what people have purchased/found good. If you type in infrared saunas or even just saunas in the search box, lots of posts should come up. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[mschmidt]

Judy,

This post just scares the living cr!* out of me!!  I agree with everyone–I would look into the possibility of getting clindy iv's if you aren't seeing results with Minocin this time around.  I know of 1 person who has been off all abx for about 7 years, and suffers from digital ulcers and some slight skin tightening.  The question shouldn't be what has happened to others–the question should be what is best for me? I think all of us, individually need to decide what is best.  Personally, I never want to ever return to where I was a year ago, and will stay on abx until I reach complete remission, and make a decision of what drugs I will continue to be on.  Minocin has worked for me thus far, and if I have to take that to stay in remission the rest of my life, then I will.  The clindy iv's every month….well, that's a whole other story, of which I will decide next year. 

Please keep us posted about how you're doing.  I hope you find something that works for you.

Maria

[SusanSD]

So sorry to hear about the return of SD. I just had a “talk” with my rheumy who doesn't believe in AP but prescribes it because he has nothing else to offer. He proclaims I am in remission and basically wonders why I continue to see him. I told him that when I feel I am in remission, I will implement a tapering plan because I want to eventually not have to take Minocin daily. I take 2 100 mg per day, and IV clindy's every 6 months.

In the first year, I had skin tightening in tendons, trunk/chest, face and neck, legs, arms, and in the second year, when I learned about AP, Minocin stopped the skin tightening and reversed everything except my sclerodactyly. I still hope to see improvement in my fingers and that's why I haven't tapered off the protocol. If I see a plateau in symptoms for 6 months, I will conclude that that's the best remission I can get but I will never be off Minocin completely. Hopefully I'll get to the every other day maintenance phase.

It's important to understand that Minocin doesn't eradicate the bugs that cause SD. Thus stopping Minocin could mean that the bacteria could develop a resistance to the Minocin. I would strongly consider taking another antibiotic or switching because of this. There are other classes of drugs besides tetracyclines that target mycoplasma bacteria – speak to a pharmacist and/or doctor.

Good luck!

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