Home Forums General Discussion Raynaud's syndrome or scleroderma

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  • #299893
    cheryls
    Participant

    I've have RA and recently came down with Raynaud's in my fingers.  Just curious if anyone else is dealing with Raynaud's.  Also I'm having numbness/tingling on the top and side of one of my feet, not in the joint.  No redness or swelling but quite painful to the touch.  Is this a scleroderma type symptom?  Not due to see dr. for a while.  Otherwise I've been on minocin for 1-1/2 years and in last 6 months RA syptoms have really diminished wonderfully.  Thanks for any input anyone has.

    #309777
    Kim
    Participant

    Hey Cheryl,

    That's how mine started.  First diagnosed with RA, carpal tunnel in both wrists, then Raynaud's hit.  After that I noticed many areas of thickened skin around my knees, thighs and arms.  Also noticed my forehead wasn't moving (like Botox) and my scalp wasn't moving either.  I've had good improvement, but am hoping for more.

    Good idea to pay attention to your symptoms because you may want to adjust your abx or do a kick-start with Clindy IVs.

    Good luck to you………Kim

    #309778
    cheryls
    Participant

    Kim,

    Thanks for the info.  My heart sank as I read it though.  I was somehow hoping that these newest symptoms wouldn't be related to the RA.  What are Clindy's IV?  I'm not familar with what that is.  Also you list SD, Thyroid after your name, what does that mean?   I also have hypothyroidism, and have had it for 18+ years and take synthroid for that.  I guess I will watch symptoms closer and get in sooner to see my dr.  I did just have a bunch of blood work done, no results yet, because of some other wierd syptoms I've had.  Can you tell me the time frame you experience the symptoms in your case?

    Thanks again.

    Cheryl

    #309779
    DianeWI
    Participant

    Hi Cheryl,

    I don't live too far from you I'm thinking.  I'm in west central Wisconsin.

    The Raynauds that I have started when I was a child.  I actually think I was born with it.  But around age 36 I started with the severe burning, not just in the hands and feet, but all over.   My legs are the worst.  Arms can get bad but usually I can keep the arms warmer easier then the legs.  My legs can get so severe that I can hardly move them.  But with the help of Verapamil, I am warmer.   I was doing Hepparin shots but after a time that didn't seem to be doing the job either.

    I'm not doing the Clindo I.V.'s anymore but while I was on it, I did feel more in control of the Raynauds.  Dr. W. doesn't want to do the I.V.s on me anymore.  Dr. S. would!

    Do you see Dr. S. in Iowa?  I have seen him only as a second opinion.  I usually head for Wisconsin Dells which is a 2 1/2 hr. hike for me.

    Diane

    #309780
    Goodwife
    Participant

    Hi,

    Raynauds was my hubby's first symptom and then later diagnosed with scleroderma.  I think Raynauds can be associated with either Scleroderma (SD) or RA or lupus, etc.  He did not have the tingling numb feeling you describe, however.

    #309781
    Kim
    Participant

    Good news Cheryl, if it turns out to be SD you are catching it early and should have excellent results, especially since you're already taking Minocin.  As for the Raynaud's, do the souls of your feet turn white then red when you take a shower?  The reason I list 'thyroid' in my dx is because it was a result of the autoimmune stuff.  The IVs people refer to are a second antibiotic, Clindamycin (sp), that have been very effective to use periodically along with the Minocin for people that need a 'boost'.  Another abx combo is Minocin and Azithromycin (sp).  The tough part is you kind of have to figure out what the best dose and combo is for you, because people respond differently and sometimes what once worked is no longer having the desired results so things have to be adjusted.

    Good luck with this…..Kim

    #309782
    cheryls
    Participant

    Thanks Diane, I do live just outside of the Mpls. area and see Dr. K in Woodbury.  I wonder if he would be closer than Wisc. Dells for you?  You can let me know if you want his info.

    The new tingling/numbness in my foot also has a burning feeling.  I was hoping it was due to a particular pair of shoes, but its been almost 3 weeks and I have avoided those so am guessing not due to the shoes.

    The Raynaud's in my fingertips is always triggered by cold and goes away as fast as it comes, so far……..and that's the only place if get that.

    #309783
    cheryls
    Participant

    Kim,

    I haven't noticed Raynaud's my feet, but will sure check in the shower tomorrow morning, especially since they are always cold anyway here in MN. 

    When I started on the minocin I herxed pretty good for quite a while and haven't been the best at taking the full 200 mg. 3xweek.  I'm going to make a better effort at it now though. 

    The RA in my wrists, where after the initial palindromic rounds it finally settled, have been so great for so many months now that until the last couple weeks I thought it was a mircle cure.  I guess you must never get over RA completely.  I still feel taking the minocin was a better course for me or I would have been on Methotrextate years earlier per my rheumy, who said starting the minocin I would be going in reverse in terms of pain etc. 

    Thanks for the encouragement. My best to you as well.

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