Systemic diffused scleroderma or RA

[Lakes]

I was diagnosed 3 weeks ago with systemic diffused scleroderma but have had symptoms for years – joint pain and deterioriation, carpal tunnel, fatigue, cough and headaches, but no skin involvement. 

I would love to hear what symptoms those of you with systemic diffused scleroderma have had. (Some of my symptoms seem to resemble RA more than scleroderma – numbness in fingers, etc.).

What antibiotics and dosage are you on? Are you taking ACE inhibitors, calcium channel blockers, antiinflammatories, vitamins and supplements, etc?

My rheumatologist put me on 100 mg minocycline, twice a day, and I take an occasional celebrex, probiotics, vitamin d, omega, calcium, and a multi vitamin. I was already on ultram for the almost constant joint pain but may stop so I can better monitor the results of AP. I've had high blood pressure a few times lately and understand it should be monitored/prevented to avoid organ “involvement” (and failure). I'm hoping mine was just a temporary result of hearing that I had a fatal disease, and it has been better now that I've learned of AP!  🙂 I'm monitoring it at home but wonder if I should be taking meds now to prevent it from getting high. Any suggestions?

What were your experiences with your doctors?

My doctor has been great and that has been a huge relief! She has about half of her arthritis patients on AP already, but her experience with scleroderma is very limited so I am in constant research mode. I may schedule an appt. with a doctor more experienced with AP and scleroderma, but have heard that some are scheduled 6 mos to a year in advance. With my classification of scleroderma being so “potentially” fatal, I really do want to make sure I'm on the right track in the mean time! So, thank you in advance for any help or insight you can send my way!!

[Kim]

Hi Lakes, and welcome to the Roadback forum.  I'm sorry for your diagnosis, but you are in the right place and doing everything correctly, so good on you. 🙂

You are very fortunate to be in the hands of a doctor (a rheumatologist, no less) experienced in using this protocol, even if you are the SD guinea pig.  You are also very fortunate to be treating in the early stages because SD can spread like wildfire.  I am an AP success story and am now in remission from Scleroderma and Lyme.  Before I knew Lyme was part of the mix, I was just treating the SD and there are two things I wish I'd discovered sooner.  One was the use of systemic enzymes (I use Neprinol) and the second was the frequent use of an infrared sauna.  The enzymes will dissolve fibrosis when taken on an empty stomach and at higher doses than what's on the label, as well as help thin your blood.  It is contraindicated if you are already on blood-thinners so you should check with your doctor first.  Most people with SD have thick, sticky blood which the bacteria love to hide in.  The sauna and the enzymes will quickly improve circulation as well as detox the dieoff from the antibiotics, so there is a huge payoff. 

There just aren't many cases of SD in the entire country so finding a doctor experienced in SD and AP makes it even tougher.  Your best bet is going to be educating yourself and reading everything you can get your hands on.  You can use the “search” feature on this board and read many inspiring posts from other success stories.  You may have to lead your doctor a bit and if something stops working look into tweaking the protocol.

Wishing you all the best……..kim

[Lakes]

Hi Kim!

Thanks so much for your reply!! I read your post that you are doing great and am so happy for you, you are such a great inspiration for the rest of us!  

Thanks for the information on the enzymes, I have a question about them – 

Is it okay to take the enzymes with the antibiotic since it should be taken on an empty stomach?   And is it okay to take vitamins and supplements at the same time as the probiotics?

I've heard that I shouldn't be taking some vitamins/supplements, especially the calcium, with the antibiotics. I'm taking a multi, d (bloodwork showed I was a little low on that so dr. recommended it), calcium, and b-6 (recommended by rheum when my osteopenia showed up), omegas, and now I'll probably add vitamin C so I don't turn black or brown or green from the minocycline!  

Do you have any other recommendations for vitamins/supplements? I've been reading about turmeric, milk thistle and some other things – I just don't know how much I can fit in my mouth in one day!! I do want to cover all the bases though.

Did you stick to a particular diet or eliminate any foods?

You are so right about the need to educate ourselves! If I hadn't found your website I would have been given medicine to treat symptoms until I died from the disease, what a waste of a good mom and grandma! 🙂 

I do consider myself fortunate to have a doctor willing to prescribe AP! Because of her inexperience with sclero, she is pretty much just honoring my requests so far. Her attitude was that I have nothing to lose since there is no cure, and she was very somber about my prognosis. I am determined to prove her wrong about that! It is great to be able to make my own choices as a patient, but the other side of that coin is that I'd better be getting it right because my life depends on it. So I've put in hours/days/weeks of research – gathering and weighing information, and in some cases coming up with more questions than answers.

My somewhat immediate concern is whether I should be on ACE inhibitor or calcium channel blockers to prevent high blood pressure/organ disfunction rather than wait for it to happen first. I'd like to make a decision by my next appt. with her, so researching that is tonight's homework.  

What is your opinion of those medications as a preventative? Did you take any of those?

My preference is to take as few meds as possible so I don't tangle up the antibiotics in any way, but I sure don't want to take any chances with that scary organ failure risk looming out there – once it's too late, it's too late!

I'm also pretty sure I have Lyme or some other tick disease – my symptoms are so classic that doctors have tested me for it almost every year for the last 15 years or so. My test results have come back negative but I know that doesn't necessarily mean anything. I'm going to ask my doctor about more specific testing I've read about so that if I do have it, I can get on an antibiotic for that as well. Do you have the list of “Lyme literate” doctors in Georgia in case my rheumatologist isn't on board with it?

Thanks again for your reply, and sorry to throw even more questions at you!! It is so wonderful to have you and the other roadback volunteers and members to learn from and lean on!!

 

 

 

[richie]

Hi-

In diffuse scleroderma an ACE inhibitor is a must –to hopefully ward off renal involvement –the fact you have high pressure should certainly sound alarms !!!–I take zestril –also for the numbness and tingling which could well be Raynauds –you should also discuss with your doctor the use of a calcium channel blocker –I have good success with adalat XR –you should also be certain to take the calcium far away from the minocycline –at least two hours -if not more —

richie

[Lakes]

Thanks Richie, based on a few things I read it seemed like I should be jumping right on that – just wasn't sure since my rheumatologist didn't recommend them yet. She has very little experience with scleroderma though, so it looks like it will be up to me to chart my own course. I think I'll give her a call tomorrow to get those prescriptions, thanks for helping me out!!

[Cheryl F]

Another perspective…

Personally, I would ask my rheumy why and when they would recommend an ACE inhibitor, but I would not want to put that in my body if it were not necessary.  Yes, this is something that needs to be watched carefully and considered for when it is needed, but I would not want to use an ACE inhibitor prophylactically (to protect against something that might happen).  Yes, any of the mainstream drugs can be life savers when needed. 

If you aren't having any symptoms or diagnostic tests that show you are at risk and are in need of ACE inhibitors, personally, I would not want another chemical in my already struggling body.  In the book I am reading the author repeatedly asks, “is depression a Prozac deficiency?”  Well, I might ask, is scleroderma renal failure an ACE inhibitor deficiency?  Not to say that this drug is not important, IT IS! But if you are not yet experiencing this issue, why not learn more about what to look for in scleroderma kidney involvement and learn ways to prevent it. 

Just my opinion.

Whatever you do, you are on the right track, learn everything you can so you can make the best choices for your personal situation.

Cheryl Ferguson

 

[Kim]

Hi Lakes,

I never needed an ACE inhibitor or calcium channel blocker, but I did have regular labs done and would have pounced if needed.

In my case, I learned later that ALL of my long list of auto-immune diseases were triggered by Lyme.  I've had over 20 tick bites in a 5-year period and insisted on being tested, then went to a Lyme specialist.  We are seeing more and more Lyme/SD combos so definitely worth checking out.  My LLMD will only accept results from Igenex testing, and even then it's still a clinical diagnosis. 

I'll send you a PM of Lyme docs in your area.

Take care…..kim

p.s. you asked about diet, supplements, etc., and this is where I fall short.  I've poured so much energy into getting to this point, but am over my head with the rest and is why I've sought the help of a functional medicine doc to help clean up the rest of my issues with thyroid, osteoporosis and hormones.  Clearly, my immune system is more on track now, but I want it even better than it was before I got sick so I don't go down this road again. 😉

[richie]

Hi-But the problem is that her blood pressure is already elevated —

richie

[Lakes]

Hi Kim and Richie and Cheryl,

Thanks so much for your feedback on this – it is such a relief to talk to someone with first hand experience! Otherwise it would feel very lonely and scary out here, especially since my doctor has no SD experience. 

My blood pressure was high at my dr. appt. but she said it may be a temporary blip and recommended I check it every 3 days. Most of my readings have been “high normal”, around 137 over 85. But I just took it again and it is now 149 over 78 – according to what I've read that is “hypertension stage 1” (for the systolic part).

So, as much as I don't want to throw too many meds in the mix (I don't want ANYTHING to stop the power of that Minocin!) it looks like I need to get on top of this one. I have an appointment with my doctor next Tuesday but I think I'll give her a call today.

UPDATE – I called dr's office and they said those #s are not really high – nothing to worry about unless it is 150 or above consistently. So, unless something changes I'll just wait until my appt. with her next week and get her opinion about the ACE I. and Calcium CBs then – maybe she will have done some research on SD herself this past month and have some good information.

 

 

 

 

 

[Lakes]

Update to my post regarding blood pressure – it turns out whomever I spoke to on the phone at the doctor's office gave me misinformation about acceptable bp levels –  I even had her repeat it and wrote it down, so I know I didn't hear her incorrectly.

When I had my appt. the next week they said my bp WAS consistently high and put me on lisinopril. I asked her about the misinformation I was given on the phone – the phys assistant just said “I don't know who you spoke to, but they were wrong”  so another lesson learned – be careful who you talk to when you call your doctor's office, and don't ever stop looking out for yourself!

[mkbeeliever]

[user=1613]Lakes[/user] wrote:

Update to my post regarding blood pressure – it turns out whomever I spoke to on the phone at the doctor's office gave me misinformation about acceptable bp levels –  I even had her repeat it and wrote it down, so I know I didn't hear her incorrectly.

When I had my appt. the next week they said my bp WAS consistently high and put me on lisinopril. I asked her about the misinformation I was given on the phone – the phys assistant just said “I don't know who you spoke to, but they were wrong”  so another lesson learned – be careful who you talk to when you call your doctor's office, and don't ever stop looking out for yourself!

While I hate that you have to take BP meds, you are on the right one…an ACE inhibitor is exactly what you need to ward off possible kidney failure!  If only my mom had been on one, maybe she would not have gone through what she's gone through and continues to go through every M-W-F!
Great lesson learned!

[Lakes]

Hi Mkbeeliever,

I follow your mom's progress and always enjoy hearing from you! I'm so sorry that her doctor did not catch her in time to prevent organ involvement. It sounds like you are both fighters and are determined to win this battle, and I am convinced that you will! I don't know much about dialysis, what is her next step or will this be an indefinitely ongoing treatment?

[mkbeeliever]

[user=1613]Lakes[/user] wrote:

Hi Mkbeeliever,

I follow your mom's progress and always enjoy hearing from you! I'm so sorry that her doctor did not catch her in time to prevent organ involvement. It sounds like you are both fighters and are determined to win this battle, and I am convinced that you will! I don't know much about dialysis, what is her next step or will this be an indefinitely ongoing treatment?

Lakes,  The next step would be kidney transplant if she's a candidate.  I don't know if she could withstand such an operation right now.  Of course, no one knows when a kidney would be available.  It could be years or it could be right away if there is a match in our family.  We have talked about it briefly, have a referral to the kidney transplant team at Piedmont but have not gone yet.  Apparently it's an all day appointment of testing.  We would definitely need a team who knows scleroderma.  We'll probably go meet with them in the new year and see what they have to say but my gut tells me she needs to get better first before we take on another operation that is huge like this.

She will continue dialysis until her kidneys start to function again (we still pray for this!) or she gets a new kidney and it works and she doesn't reject it.

Thanks for asking about her!  And yes, we are fighters.  We will fight until there is no fight left in us.  God's will be done!

Here's a picture we took Saturday at dinner.  These sweet girls are her nieces.  My dad's youngest brother's daughters.  My heart – I love these baby girls.  The one on the right is my God Daughter.

Bless you,
Michelle

[Lakes]

Hi Michelle,

I was very glad to read there is a possibility that her kidneys could start working again! I wasn't sure what kidney function could be expected once someone was on dialysis. That is what we will all hope and pray for!!

[Lakes]

.. and I love the picture! Your mom looks fantastic!

[Author]

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