SCLERODERMA – help – backslide

[Goodwife]

Hi all,

As you may know, my hubby was dx w/SD Aug 06.  Been on mino and clindy IVs periodically for 19 months, doing GREAT!  Over last month, has been under a wave of continual stress.  Now dealing with small dark spots on tips of fingers (they have returned) usually a precurser to fingertip ulcers.  Very discouraged and anxiety ridden all of a sudden.  Not sure what direction to go.  It seems like also some fatigue back (although could be due to excessive physical work having been done over the last month, too).  Any advice is appreciated.  Also, not quite a month ago, had clindy IV (2 on 1 day) – and mino MWF (usual) – I know that stress is a huge trigger, but I don't know if that is the cause of this resurgence, or what.  help, please.

 

Goodwife

[Lynne G.SD]

Hi Goodwife;
      I had the scare of my life also but things are back to normal now….thank God.I know exactly what caused it.I had to spray fungicide in the greenhouse last March and took the usual precautions but I guess it was not enough.A few weeks later I started to itch,first on my back,then arms,then legs and then everywhere over a period of a month.Then I started to get stiff ligaments,the same as when you go to the gym and have a darn good worout after not doing any exercise for months.I thought I had pulled a groin muscle while climbing up in the rafters of the greenhouse so I just ignored it.Then my neck and arms did the same thing. I started to put two and two together and figured out that the SD was returning when my finger tips started to burn.
        I simply started taking 200mg mino a day and in 3 weeks things were back to normal and I returned to pulsed low dose of 3 antibiotics 2 months later.The nice thing about mino is it's anti collagenese effect and it seemd to just disolve the collagen that was building up again.
        I hope your hubby is on viagra for his fingers.It seems to be the best vasodilator for people with SD.    Lynne

[Goodwife]

Thanks, Lynne.  Glad things are back to normal for you.  We looked into Viagra when things rapidly worsened a few months after dx, but we bypassed it and went on to the mino, combined with the antiinflammatory diet and all the supplements, and within a month his fingers were healed.  It was truly a miracle.  I am very scared right now.  His fingertips are also becoming sensitive, also the precurser for the ulcers.  I'm not sure what to do first.  Increase the mino?  I am really scared.

[richie]

Hi
I am surprised no doctor ever thought to put him on a calcium channel blocker –its almost basic to be prescribed with Raynauds or ulcers –it is one of those adjunct meds to minocin that is so important in treating scleroderma and its related problems
Richie

[Lynne G.SD]

Hi Kid;
     I can imagine how both of you must feel right now.It won't hurt to try mino at 200mg a day.I know that it is fairly immunosuppressive at this dose but it sure beats methotrexate ot some other suppressor.Why don't you give it a try for a couple of weeks to see what happens.I saw results in just that amount of time and then went back to 100mg MWF .metronidazole 100mg evry other day with 50mg Zith every 10 days or so so.

[Kim]

Hey L,

So sorry about this scare for you both.  I've been under a lot of stress lately and the first thing that really started hurting was my fingertips and just barely bumping my fingernails was agony.  In my case, I know I bring a certain amount of stress upon myself at just being frustrated at my limitations.  This cruel disease really wears on you and I absolutely believe that stress plays a huge part as you can never get a break from it.

Natto is also good for circulation if not wanting to get on another prescription med.

In my case, when I can get the stress level down my finger pain is lessened and I can be more active which is crucial for my sanity and I'm sure your husband's.

Sure hope you can turn this around quickly…..kim

[Goodwife]

Richie,

He was on procardia way back when before his dx when the raynauds surfaced and that was his only symptom.  It did nothing for the raynauds.  Even after starting the mino, it did nothing.  We were in july/august heat and it did nothing.  He was frustrated, and shortly after starting the mino, went off the procardia.  That was probably December 06 and he hasn't needed it since.  I will talk with him about going back on it.  Thanks,

Lauren

[Goodwife]

Hi  Lynne,

I will mention to him about trying the 200 mg/day for a few weeks – when he first started mino, he was on it daily about about 6 months, and he really did not feel well on it – once he dropped to MWF, he felt much better.  But since it is a short term  try, I will see if he will do it.  Thank you for your advice. 

L

[Goodwife]

Thanks, Kim – I will look into Natto.  Don't know much about it, other that it is like soybeans(?).  It is very scary to be doing so well and all of a sudden you feel like a truck hit you – I hope things continually improve for you – I didn't know you started on MP.  How is that going?

 

Lauren

[Kim]

Lauren,

I started MP in March after reaching a good state of remission from AP.  Although most of my SD symptoms had either reversed or were at least under control, I knew there was still a lot of infection that had not been reached.  I was concerned that if I got complacent the SD would return with a vengeance so I decided to take it to the next level with MP.  I also strongly suspect I have Lyme due to my numerous tick bites and AP is not enough for Lyme.  To say MP is a rough program is putting it mildly.  I feel worse now than I have in a long long time and some areas of thickened skin that were gone have returned, so I too am backsliding.  Not a comforting feeling which is adding to my stress levels.  They tell people starting MP to expect feeling bad for about 12-18 months which can be a deal breaker for people that cannot be flexible and rest throughout the day as needed.  I truly don't know how people with small children or those that travel for work (like John) manage.  My plan is to re-evaluate after one year and then decide where I am as I can't tolerate losing all the gains I've had on AP.

Good luck to you and your hubby with sorting out his setback….kim

[Goodwife]

Kim,

Thanks for your reply – good luck on MP – It does seem difficult and complicated, but if that is the route you chose, I'm sure one day at a time things will get better.  I will keep you posted on my hubby – I just don't know where to start – I have to sort this all out.  Thanks again

L

[Randy]

Hi Lauren,

No need to freak out.  You know AP works first hand for SD, and Viagra knocks out the Raynauds.  I'm sure this is a very little bump along the way, while your husband continues to feel like a million bucks.

While I was going to my Clindy IV, I was thinking about your post and decided I should add a reply….

Us folks who are just starting AP or have been on AP for a relativiely short time (I'm almost at 6 months on AP) really look to the encouraging posts from SD AP folks who have persisted on AP for over a year and are almost all better, if not all better.

Your hubby is going to be fine, and you'll be providing more encouraging posts very soon.

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"

[Goodwife]

Thanks, Randy.  It's encouraging words like that that make me stop, take a deep breath, and regroup.  You are absolutely right – I do know first hand that AP works – I witnessed it – I guess what is scary is , “why now” and what caused this 'backslide'?  When there are such physical signs as ulcers on fingers, which you look at every single day, probably a hundred times, it is hard not to freak out.  But I am rethinking everything that everyone has told me and trying to figure out which direction to go from here.  Thank you again, and good luck for continued improvements!!

 

L

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