swelling

[charli]

Anyone here have nose swelling with scleroderma?  My nose is extremely swollen and it is really depressing me.   My face has been puffy for a long time, along with mouth tightening but my nose has just recently started swelling and I hate it!!!

I don't have a diagnosis of scleroderma yet, but have positive scl 70 antibodies.  I've tried a little minocin but cannot get yeast issues under control.  I think the yeast has been a problem of mine for awhile now even before I found out about the positive antibiodies.  I believe I have been tested for celiac.

How will I ever take the antibotics?  Any thoughts or suggestions?

Thanks,

Charli

[Maz]

[user=1799]charli[/user] wrote:

Anyone here have nose swelling with scleroderma?  My nose is extremely swollen and it is really depressing me.   My face has been puffy for a long time, along with mouth tightening but my nose has just recently started swelling and I hate it!!!

I don't have a diagnosis of scleroderma yet, but have positive scl 70 antibodies.  I've tried a little minocin but cannot get yeast issues under control.  I think the yeast has been a problem of mine for awhile now even before I found out about the positive antibiodies.  I believe I have been tested for celiac.

How will I ever take the antibotics?  Any thoughts or suggestions?

Hi Charli,

Sorry to hear you've got a candida problem you're trying to get sorted out. Are you working with an experienced AP physician?

Yeast is a problem that can be treated at the same time as taking AP, if necessary, because scleroderma is not one of those diseases you will want to wait on to start AP. 😉 In fact, it does appear (though this is an old study) that minocycline has some anti-candida properties, though I will admit I haven't done a great deal of research on the topic:

The effect of minocycline on Candida albicans

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC478100/

This more recent study from Brazil in relation to treating periodontal disease with minocycline seems to indicate that the concentrations of minocycline are important in candida albicans inhibition:

http://www.scielo.br/scielo.php?pid=S1806-83242006000300004&script=sci_arttext

In the conclusions section, it says: “[font=””]Ninety six percent of the Candida spp. isolates were inhibited by concentrations up to 16 

[Kim]

Hey Charli,

I will never understand why rheumatologists tell suspected cases of SD to “wait and see” before giving a diagnosis.  My guess is that they know they have nothing good to offer and  the insurance implications once you have a diagnosis can be very unfair.  When my rheumy told me we should wait and see how this progresses I told him that couldn't even make sense to him.  Once I went home and studied how fast SD does it's damage, I was furious and went to Plan B.  Plan B was basically going solo with AP and the help of my PCP writing prescriptions.  Later I traveled to an experienced AP doc.

Granted most SD people are on 200 mg daily Minocin, but I felt awful on that dose and couldn't keep the yeast under control.  I did quite well on 200 mg Mon/Wed/Fri, so you'll have to see what dose will yield results.

Edema was a huge problem for me before I knew that my blood was like thick sludge.  Frequent use of an infrared sauna and enzymes have thinned my blood enough to circulate more normally.  I didn't have kidney, heart or lung issues, but I'm sure you know you need to be monitored.

Hang in there, Charli, you are going through the worst part.  Learn all you can and insist on treating the way that makes sense to you.  I do not hesitate to say no to procedures that just make the doctor's job easier for them if it is damaging to me.  Always know your options, even if that means telling the doctor you want time to think it over and get back to him.

Take care…….kim

[charli]

Maz and Kim-

Thank you both for your replies!  You guys are the best!

Maz,

I am not working with an experienced doctor at this time.  I am hoping to go see Dr. S.  sometime soon.  As a matter of fact I emailed him last week and he responded to me!!  He said he thinks my symptoms are consistant with scleroderma and he would definately recommend clindy IV's.  I asked alot of questions and he wants me to call him for a consult.  I wasnt sure if he wanted me to call for an appt to consult with him or if he would consult with me over the phone until I can hopefully travel to see him. I am hoping to get to talk to him about what I could be doing in the mean time.

Thank you for the info on the anti yeast properties of the minocin.  I know I need to invest in a better probiotic, the one I take is not very expensive.  I sometimes wonder if I am not sensitive to the minocin, when I try to take it, I feel almost instantly worse.  I feel like I get hot, dizzy, and my pain goes up!  What do you think, do you think maybe I should try doxy?

Also, I know you said you take PB8 from vitacost.  Is there just one kind of PB8 or different kinds? It seems like I looked and there was several different kinds.  Was not sure which to order.

Thanks again Maz for all your help.  Please know that I really appreciate all your advice. 

Happy New Year!

Sincerely,

Charli

 

 

 

[charli]

Hey Kim!

I know what you mean about doctors not wanting to throw out a diagnosis of scleroderma, yet, I can't find one that offers any suggestions about my symptoms.  I mean to me who has positive scl 70 antibodies, weird face swelling, tight mouth, swelling and painful legs, neck pain, etc., and does not have scleroderma?!!

You said that you also had edema, did your face swell up?   Honestly my face is looking really weird, especially since my nose has become huge.  My eyes are really looking sunk in, too.  I am feeling like a freak and very depressed about this whole face stuff!!

I am hoping to get the neprinol you are talking about.  Is this something your doc recommended?  Should I talk to my doctor about this first?  Also, I am wondering if there is only one kind of neprinol at vitacost? How much do you take a day?  I was thinking about buying a smaller, more affordable bottle at first to make sure I can tolerate it.  I am sensitive to just about everything anymore.

Thanks for all your help!

Sincerely,

Charli

 

 

[mkbeeliever]

[user=1799]charli[/user] wrote:

I am hoping to go see Dr. S.  sometime soon.  As a matter of fact I emailed him last week and he responded to me!! 

As Kimmy would say, Dr. S is a prince of a guy.  I have corresponded with him a dozen times via email.  He's amazing and so compassionate!  I am seriously contemplating a trip to Ida Grove with my mom.  Not anytime soon though, I will wait for the “thaw!” 

Blessings,
Michelle

[Kim]

[user=1799]charli[/user] wrote:

Hey Kim!

I know what you mean about doctors not wanting to throw out a diagnosis of scleroderma, yet, I can't find one that offers any suggestions about my symptoms.  I mean to me who has positive scl 70 antibodies, weird face swelling, tight mouth, swelling and painful legs, neck pain, etc., and does not have scleroderma?!!

You said that you also had edema, did your face swell up?   Honestly my face is looking really weird, especially since my nose has become huge.  My eyes are really looking sunk in, too.  I am feeling like a freak and very depressed about this whole face stuff!!

I am hoping to get the neprinol you are talking about.  Is this something your doc recommended?  Should I talk to my doctor about this first?  Also, I am wondering if there is only one kind of neprinol at vitacost? How much do you take a day?  I was thinking about buying a smaller, more affordable bottle at first to make sure I can tolerate it.  I am sensitive to just about everything anymore.

Hey Charli,

My swelling was more in my hands, legs and feet, and knees.  Not as much in my face, but I did have (and still do) more sunken eyes.  Remember, it's a connective tissue disease so anything could happen.

Of course, you should always ask your doctor before taking something, but don't be surprised if he's clueless about enzymes.  My super-smart LLMD didn't know about Neprinol, but he did prescribe Creon which is on the same track and he's the one that ordered the hypercoagulation test.  Most doctors wouldn't ever think to test for hypercoagulation, but it is a life-threatening situation which greatly increases your risk for stroke.  You get a double whammy with SD because your blood vessels get a buildup of extra collagen making them narrower, and then you get this thick pudding-like blood trying to circulate……well, you get the picture.

We've had lots of Neprinol discussions on the board so you can use the “search” feature if you care to read back.

Take care…….kim

p.s. you can read my testimonial from the Home section to see my winding road back to somewhat of a normal life. 😕

[Maz]

[user=1799]charli[/user] wrote:

I am hoping to go see Dr. S.  sometime soon. 

I asked alot of questions and he wants me to call him for a consult.

I sometimes wonder if I am not sensitive to the minocin, when I try to take it, I feel almost instantly worse.  I feel like I get hot, dizzy, and my pain goes up!  What do you think, do you think maybe I should try doxy?

Also, I know you said you take PB8 from vitacost.  Is there just one kind of PB8 or different kinds? It seems like I looked and there was several different kinds.  Was not sure which to order.

Hi Charli,

That's fantastic that you are going to see Dr S soon. He is a gem of a guy, from what I understand, and will get you on track with your AP and hopefully will help sort out IVs you can have from home with a home infusion service, if needed. I'm not sure what he meant about the phone consult either, but I'm sure if you put a call in asking to schedule a phone consult, he'll get back to you on that when he can and you can ask him all the questions in your list. Just be sure to write everything down that's on your mind so you can make the most of the time on the phone with him.

Not all scleroderma patients experience a herxheimer reaction, but certainly those with overlaps of other rheumatics diseases can and do, especially if there is an inflammatory component. This is just surmise on my part, but it's possible you are herxing when you take your mino (fever and increase in symptoms is common while herxing, as well as a transient temperature/fever). This isn't a bad thing, because it's telling you it's working. However, if you are sensitive, you might want to ask Dr S about starting low and slow on the protocol and working up to your optimal dose. If you have been taking 100mg caps right off the bat, this might be too much for you, for starters. Everyone is unique, so it's always better to start on a low dose and then dial it up from there to tolerance over time. Hypersensitivity issues can be just as bad as the actual disease itself and it can then be harder to distinguish between herxing, hypersensitivity and disease progression, itself. So maybe you could ask Dr S if you could start on 50mg on a Mon, Wed, Fri and see how that works for a few weeks? If okay, then you could start dialing the dose up from there.

I have found PB8 probiotics in vegatarian capsules to work great for me and I take 8 capsules a day, which seems to be my optimal dose. I worked up in dose to bowel tolerance (too many = constipation and too little = loose stools while on antibiotics). I use the vegetarian caps, because the regular capsules are made from gelatin derived from animals and just prefer not to add any foreign proteins into the mix. Some folk are actually more sensitive to regular gelatin caps. I am not sure if I am or not, but it was just one thing not to have to think about. 😉 Here is the direct link to the ones I use:

http://www.vitacost.com/Nutrition-Now-PB-8-Pro-Biotic-Acidophilus?csrc=GPF-027917003573

Perhaps others can chime in here to share their preferred brand of probiotic for you or you can try using the search box above to look for other threads were this is discussed. Some people like to rotate their probiotics or their physician has recommended a particular brand. All this is fine and whatever works for someone is best, as everyone's gut flora/fauna balance will be unique. I've just found PB8 works for me.  Occasionally, I  have run out (now I buy 5 or 6 bottles at a time) and have tried other brands, but none seem to be as good for me. I like this brand, because it doesn't need refridgerating while sealed and I only put it in the fridge when opened.

Be sure when you start your antibiotics again to keep your probiotics spaced well away from your antibiotics. I always leave a good window of at least 2 hours either side of my antibiotic dose.

There is a ton of info on the main site under the Education tab that should help with some of your questions, too. I'd highly recommend reading both the Historical and Current Protocols in the Physician Packets, as well as the brochure info on herxes below:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

Hope the info here will help you to formulate some questions for Dr S! Look forward to hearing how your phone consult goes when you have it!

Peace, Maz

[mschmidt]

Charli,

I'm so sorry to hear that you are having issues with swelling.  I certainly can relate to that!  I typed a long-winded message to you but, accidentally closed out of it and lost it:angry:  So, I'm going to attempt to recall it in my mind.  I went through 17 doctors over the course of a year, did countless unneccesary testing (one of which was a bone marrow aspiration–no fun when I was emaciated at 105 lbs), and was told I probably had cancer, but they weren't 100%. I was even told I DEFINITELY did not have Scleroderma or Lyme Disease because my bloodwork didn't show anything other than a slightly elevated ANA (1:80). (Go figure, I have both!!) I was frustrated, and decided to take matters into my own hands, before the doctors killed me (or let me die).  I demanded all of my medical records from them so I could read what they really thought I had.  I found that one of the docs wrote in February of 2009 (6 months from the onset of my symptoms, before any terrible swelling and skin tightness, or lower body symptoms) that he suspected I had an autoimmune disorder.  I sure wish he would have told me that instead of telling me NOTHING was wrong with me.  I finally landed in front of a rheumatologist in October of 2009, who told me I had Scleroderma, that there was nothing she could do for me until my organs started failing…there were good drugs to help me then!  She prescribed prednisone, and told me to get myself into a clinical research study on SD.  When I checked it out, and the drugs they were using, I never did go for the consult with the researcher.  I also never took the prednisone.  Did I mention that at the first visit she also told me I had about 3 years to live?? Nice bedside manner on a first visit!!

Most of my body was affected by SD by the time I started taking Minocin in December of 2008.  My hands, arms, knees, feet, chest, neck and face were swollen.  My face was actually the last thing to swell, and I didn't even notice it looking different until I saw a photo of myself at a friend's wedding.  I had no wrinkles, was swollen and tight around my eyes, my cheeks were high and prominent, I was swollen and tight around my nose, my lips, and especially noticed above my upper lip, and my facial expressions were weird and not me at all.  I hated looking in the mirror, was depressed, didn't go out in public, and felt like a freak.  I say these things because I know how aweful it feels–I've been there.

Now, here's the good news…AP works!! Within 48 hours of taking Minocin, I was dizzy, had vertigo, nausea, and felt tired.  2 weeks into it, all that went away, and so did some joint pain, swelling, and tightness.  I decided to see Dr. S in Iowa early January 2009, and did the clindamycin iv's.  Day 2 of the series I landed in the ER with sever PCP's and heart palpitations but, felt like a champ afterwards.  I wish I could say that wonderful feeling lasted but, it didn't.  I found out Dr. F in California was covered under my insurance so, I made the trekk out there in March.  I've been getting iv's for 5 days, every fourth week since then.  March-May was BRUTAL–you could NOT convince me I was herxing because it felt like I was progressing rapidly in my disease.  It was so bad that I could actually smell bacteria coming out of my pores, and had terrible body odor.  It was disgusting but, comforting at the same time because I knew that the treatments were drawing poison out of my body.  June came, and all the herxing and pain vanished away.  So did the swelling, joint pain, tightness, etc.  I found it fascinating that on day 1 of my iv series, I could feel the clindamycin go directly to my face and hands–the worst tightening on my body affected by SD.  That has gotten less and less, and now I just feel really good.  In fact, most days I don't even notice I'm sick anymore!  If it wasn't for my slight hand contractures, I would technically be “normal.” (or as normal as I can be since I've never been normal:D)

I know this is redundant, since I posted a pic of myself smiling a few weeks back but, I wanted you to see how happy I am to smile again. (I've attached my photo to this post)  I didn't appreciate my looks before SD hit but, I certainly do now.  My dimples are coming back, and I find myself in front of the mirror a lot lately–watching my face come back to life.  All I can say is SD is so unpredictable, and can progress so quickly…you want to start treatment as early as you possibly can because it can do SO much damage to your body.  There are ways to work up to the recommended dosage, and you absolutely need a good AP doctor to help you do that.  The only docs I see regularly are Dr. F, my LLMD, and my IM medicine doctor, who is no longer a skeptic about whether AP works. (he's fascinated by my progress)  Please don't take the “wait and see” approach because you don't want to experience what SD can potentially do to you.  Looking back, I'm sure there was an easier, less painful way for me to have approached AP but, given who I am, and how competitive I am, I took the all or nothing approach and never looked back.  Luckily, those painful episodes are only a memory now.

I will end my long winded message with one more piece of advice:  Visit this board often, ask lots of questions and know that EVERY SINGLE PERSON on this board is here to offer love, support, courage, strength, and their own personal experiences to you at any time.  If it wasn't for this board, I'm not sure I'd be here to talk about my recovery.  AP works, and you also need to tell yourself you're in a mode of healing, not in the mode of being sick.  As far as your yeast issues goes, a good AP doc will address those.  Probiotics are crucial to balancing your gut flora–I also take PB8 (vegetarian), Culturelle (vegetarian), Saccharomyces Boulardii, and Complete Probiotics (Mercola). 

I hope this New Year finds many blessings for you, including good health. 

Maria

[charli]

Hi Maz,

Thanks again for all your insight!  You are amazing!

A couple of things,  I started out taking 50mg minocin (by the way I asked not to get generic when I filled my rx and when I got it,  the bottle says Dynacin)  I googled it and it does say it is minocin.  Have you ever heard of it?  I have been wanting to ask you guys about it.   Anyways, I was taking it 2x per day.  I did this for a couple of weeks and experienced headaches, dizzyiness, and hot feelings and flushes, which by the way, were all pretty tolerable at first.  I actually welcomed the hot feelings  because I am soooo cold all the time.

I did think I noticed a couple of positive things during this 2 week period.  My legs felt better, fatigue was better, my esphogus felt less swollen, and like I said I felt warmer.  However my neck about killed me, and my face also felt worse. (stinging, burning type pain)

After the 2 weeks, I started feeling worse all over.  This is when I feel like the yeast really kicked in.  ( I believe this is an underlying issue with me anyway)  So I stopped the minocin, got an rx for diflucan, and restarted 50mg a day on MWF only.  I did this for a for a couple weeks and still continued to feel worse, so I ended up stopping the minocin.

During the last few weeks, I have been feeling horrible. Now I even have a big fat nose to go along with all this pain! :angry:  I am sure stress and diet from the holidays are part to blame. 

I am still trying to control yeast and have taken a minocin here and there.  I just feel like everytime I take it, I feel sooo much worse.   I have read about some of the reactions but I am finding it hard to know the difference between, progression, allergy, sensitivity, etc.  Do you think I could be sensitive since I am already going slow with this?

This is just so confusing!  Plus, it don't help when I feel like I can't even think straight anymore!!:X

Thanks again Maz, for listening.  I will definately let you know about my consult with Dr. S.

Sincerely,

Charli 

 

 

 

 

[Parisa]

Charli,

My husband doesn't have scleroderma but he had nose swelling and stiffness in his face.  This resolved a while back and I had actually forgotten about the nose swelling until I saw your post.

[charli]

Hi Maria,

WOW!! What a story, thank you sooo much for sharing!  I am sorry you had to type it twice!!

It sounds like things were pretty rough for you! I am so glad things have turned around for you, Maria!!  Your stories give me so much hope that one day, too, I can kick some scleroderma butt!!!

I will definately stay around here and keep everyone posted on how things are going with me.  I have already been bugging Maz and Kim to death!!  Everyone here is so nice and helpful! 

Thanks again for sharing, Maria.  I have to go for now but I wanted to be sure and let you know how inspired I was with your story.  I appreciate all the advice. 

I hope you continue to get better.  Your smile is beautiful!!

Thanks again,

Charli

[charli]

I talked to Dr S.!!  He is such a nice man!  I wasn't quite as prepared as I wanted to be because I thought I was just calling to schedule a phone consult but he got right on the phone with me!!:)

Basically, he told me to keep taking the minocin at 50mg MWF and try to work up from there.  He wasn't too concerned with the yeast.  He said the yeast would not keep the minocin from working.   He does recommend the clindy IVs, which I hope to be going to see him for those sometime in the spring.  I did ask him about being sensitive and he thought maybe I was herxing a little bit.

So, I feel better having a plan.  He told me to keep in touch with him and let him know how things are going.  What a great guy!  I can't wait to meet him.

I am going to need a refill on the minocin, soon.  In an earlier post under this topic, I asked Maz (not sure if you seen it, Maz) but, when I asked for the name brand minocin, they give me dynacin.  Has anyone heard of this kind?  Should I ask for the pellet kind?  This is a rectangular shaped tablet.

Thanks everyone!

Sincerely,

Charli

 

[mschmidt]

Charli,

I'm so happy to hear you talked with Dr. S–he is SUCH an angel.  I went to see him for my 1st round of clindy iv's, and the energy and compassion he had for helping me was simply amazing.  You will feel so comfortable around him and his staff.  That trip gave me so much hope, and I know you will feel the same way.

I'm glad to hear he recommended that you continue to take the Minocin.  I think it's really important that you start as early as possible.  You must live in the states.   I get brand name Minocin, and it's a light and dark green pellitized capsule made by Triax pharmaceuticals.  I believe the other brand name Minocin is Dynacin–the generic name is minocycline hydrochloride.  The pellitized version that I take doesn't cause me heartburn. (of course I always take it and remain upright for an hour + after) 

Please keep us posted about your progress–I'm so excited for you!!

Maria

[Patti D]

No Maria
You are such an angel. What a beautiful story and you look wonderful. On another post I had mentioned you looked my daughters age. My daughter is a real cutie and she is 28. That should make your day!!!
Can I also add you look healthy . We are blessed to have this board and all of this community to help us .
You included.
Thanks!
Patti

[Author]

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