My Scleroderma diagnosis and questions on next steps

[Tacket]

I believe it was June or July 2014 when I noticed my hands feeling funny. Around September their was pronounced swelling in my hands and feet. My general practitioner prescribed prednisone and increased the dosage 3 times over 3 weeks and there was no improvement. She referred me to a Rheumatologist who ran more labs and then diagnosed me as having limited cutaneous scleroderma. The same symptoms of swollen, itchy and painful hands and feet remain. My knees are also stiff and make it really difficult to get up. Dr. T prescribed 1000mg of CellCept twice a day. But now as I understand, this drug is used for people with organ transplants, so I assume it is to protect my organs from the Scleroderma, which is great, but I am taking absolutely nothing that may help my Scleroderma.

Dr. T then sent me to Dr. M, a Scleroderma specialist, in Houston. She reviewed my paper work and did a skin exam. She said she could see/feel skin thickening a little above my elbow and a little patch on my chest in addition to my hands and feet. Therefore, she diagnosed me as having Diffuse Scleroderma.

First question, is this the only way to distinguish between limited and diffuse? I thought I read there was a lab result like the SCL70 which was generally positive in Diffuse cases. As of my last labs, mine was negative.

Dr. M wants me to increase CellCept to 1500mg twice a day,I’m not going to increase the CellCept, because there is no indication that the amount I am taking is not sufficient, AND add 5mg of Prednisone daily, nor am I going to take the steroids, because there was no improvement when I took them in September, nor do I want this type of drug in my system. Dr. M wants me to do this for 6 months and then have a follow up visit.

I have read Henry Scammell’s, “The Proven Therapy That Can Save Your Life” and many posts on this forum. My big question is WHY would Dr. M say AP Therapy is bogus? I have talked to someone on this site who has told me that it worked for them. These are personal and true stories so why would masking my symptoms with a steroid be a better alternative than treating it with an anti-biotic? I read the reasons in the book about AP therapy not being the standard treatment but it wasn’t straight forward enough for me. Is it the drug companies that push doctors to not try something? I don’t understand how the medical community isolates them for trying this as wouldn’t everybody want to see patients try treatments that “cure” the symptoms rather than mask them. I’m confused and hoping the experiences of others who have already gone down this path can re-assure me that I’m making the right choice by not subjecting my body to months/years of prednisone.

Should I stop the CellCept as well? It would be very helpful to know what medications have been prescribed for Scleroderma and has anything improved your condition????

I’m seeing my local Rheumatologist, Dr. T, in 3 weeks, who agrees with Dr.M and refuses to prescribe the anti-biotic treatment. Since Dr. T and Dr. M are saying there is no treatment for Scleroderma, why not try the anti-biotic treatment? I am trying to make an appointment with another doctor (referred from this organization) who has prescribed AP treatment in the past. I’m hoping to compile a list of questions for this appointment and this site has already been a huge help. If you have advice on what I need to ask at my next appointment, please let me know.

[greypilgrim256]

Cellcept is used primarily in organ transplant patients, but it is increasingly being used in autoimmune diseases like Lupus and Scleroderma. Cellcept is usually prescribed to individuals with Diffuse scleroderma, particularly if there is lung involvement. It is also being used for Lupus patients with kidney involvement. It is a powerful, but very effective, immunosuppressant. It has been shown to decrease the skin involvement as well as stabilize the lungs in scleroderma.

I would highly suggest that you get a FULL scleroderma antibody panel. Scl-70 is not the only antibody associated with diffuse.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC165038/

[greypilgrim256]

FYI. I have been diagnosed by two different scleroderma specialists with different diagnosis. My first sclero specialist, Dr. Vivien Hsu of Robert Wood Johnson in NJ diagnosed me with diffuse scleroderma based on my tendon friction rubs and rapid symptoms onset. Limited scleroderma patients tend to have Raynauds YEARS, sometimes decades in advance of other symptoms.

Dr. Ami Shah of Johns Hopkins in Maryland diagnosed me as limited because she does not find any skin thickening above the elbows, knees, or on the chest. I don’t seem to notice any either in these areas.

Scleroderma is distinguished between limited and diffuse based on skin involvement. If it is limited to the hands, lower legs, and face it is limited scleroderma. Anything above the knees, elbows, or on trunk/chest is considered diffuse.

I was misdiagnosed for about a year with MCTD because I have the RNP antibody, which is associated with Mixed Connective Tissue Disease. HOWEVER, I later found out after EXTENSIVE FULL scleroderma antibody testing that I have the U3RNP antibody, which is very rare, and associated with diffuse scleroderma. Many doctors are unfamiliar with the disease so they will not know what blood work labs to look for. A scleroderma specialist should definitely be familiar with all antibody types.

Regardless, I am on Methotrexate, low dose prednisone, for about 4 months. I never developed the typical “hard skin” that comes with scleroderma, but two of my fingers are very thick and hard on the inside, if that makes sense. I still have full use of my hands thankfully.

I have been on plaque nil for about a year. My symptoms seems to have improved a little and my joint and muscle pain is completely gone. To date I have no internal organ involvement and I hope it stays that way.

I looked into the AP route and met with an AP doctor but did not go for it. If things progress despite the medication I am and my current cocktail doesn’t keep it in check I will reconsider AP.

Keep in mind there is no CURE for scleroderma, only remission. Good luck with whatever you choose.

You may also want to check out these videos as well. They are very informative.

https://www.youtube.com/watch?v=HbULz2ty3Ok

[lajc]

Hi Tacket,

I was diagnosed with diffuse scleroderma 5 years ago and did not want to go the cellcept/cytoxan route either. I was fortunate enough to find this site and was given the name of a very experienced AP doctor in Lufkin. I had raging scleroderma and it was terrifying to see and feel every inch of me getting so tight. I started antibiotics, changed my diet, and began to see and feel results in 7 months. I have mild pulmonary fibrosis that has not progressed and no other internal organ involvement .It is a slow treatment but it is working for me. I did test positive for SCL-70.

Austin is not that far from Lufkin and Dr K is very knowledgeable and easy to talk to. It’s also reassuring to talk to a doc that has had so much success treating rheumatic diseases with antibiotics. She’s treated 50 to 60 scleroderma patients. She also treats her mother who has RA.

“The New Arthritis Breakthrough” by Henry Scammell is another good book to read and may answer more of your questions about the antibiotic protocol. Best of luck to you and keep asking questions. The members here are wonderfully supportive!

Laurie

[kater]

Hi Tacket
well, I would say the rheumies do not want to prescribe AP because it is not “standard of care” as they say. There are not huge amounts of research because that is funded by big pharma and there is no money in antibiotics like there is in biologics. You might convince a rheumy to prescribe minocycline on the basis that it is a DMARD. I have won over the opinion of two now and they will prescribe for me as they see my progress as miraculous. One who laughed at me at first now says “the next person with SD that walks through that door is going on Mino”. That is quite a victory in my thinking. I have diffuse SD but negative antibody. I am now in remission after 3 years with only the most minimal symptoms and my RF and ANA is now negative. 😆 There is also a very high correlation with SD and lyme and mycoplasma infection so I would suggest you get tested for those. Western Blots 188 and 189 through Igenex. I was positive for Lyme and mycoplasma and needed a lot more antibiotics than mino to get where I am today. I never took the plaquenil or methotrexate they wanted me on. If you do have underlying infections immunosuppressive drugs are counterintuitive, You can start AP while on weaning off the prednisone if your doc approves. Good luck with the new doctor. BTW your post will get edited –or you could do that please– but for your future reference it is not okay to post full doctor names, initials only. We must try to protect those who step out of the mainstream to serve us so well. You can read so many testimonials on this site–many people in remission. This place is a godsend in a very scary time.
best to you
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Tacket]

Dear Kate – Thanks for the reply. It is very helpful and I did update the post to remove the full doctor names.

I see from your signature block that you did IV treatment for a year. Is that the most effective way? I have been calling doctors on the AP list from RBF and many of them will only provide prescriptions. I found one that is ~5 hours away that is giving me the option of IV AP for four to five weeks either twice a week or 5 to 7 days per week as a more aggressive option. Seems like since it is so far away I would be better off being more aggressive.

Looks like this will all be out of pocket as well.

It would be great to better understand how other AP sessions run and approximate cost.

thanks.

[Maz]

@Tacket wrote:

It would be great to better understand how other AP sessions run and approximate cost.

Hi Tacket,

Here is a link to a post re: how I was able to get IV clindamycin relatively inexpensively to do home infusions.

viewtopic.php?f=1&t=9311&p=68579&hilit=infuserve#p68579

If you type in “Infuserve Maz” in the search box at the top of the general discussion forum, a bunch of past posts on the topic will come up.

Hope you can find a doc to help with this. It needn’t be expensive if one can find a doc who is comfortable inserting the line and then allowing the patient to do home infusions. There are instructions on the Infuserve.com site as to how to do this. Of course, I always had my first infusion in the doc’s office to ensure all was fine.

[richie]

Hi–There really isnt anything like an {AP session}–its a normal doctors visit –the Harvard protocol -which put me into complete remission only calls for 100 mg of minocycline 2x daily —-thats it –your insurance pays that –your insurance pays the doctors visit –if the doctor doesnt take insurance -find another doctor –blood work is all covered –IVS are another story -most likely not covered –bear in mind the purpose of the Harvard doctor giving 200 mg daily was to eliminate ivs –I never had an iv –
richie

[Maz]

@richie wrote:

–bear in mind the purpose of the Harvard doctor giving 200 mg daily was to eliminate ivs –I never had an iv –

Hi Richie,

Just my humble opinion, but…

Clindamycin has a different spectrum of action and hits bugs that minocycline may not and I’m not sure why Dr. Trentham would say that the Harvard Protocol takes the place of the use of clindamycin.

You’re right that not all SDers need clindamycin and do perfectly well on minocycline, but there are others who may not do as well and the clindamycin provides a booster. I think it would be too broad a claim to place every SDer into the same box, just as the protocol needs to be titrated to each RAer. A sensible approach, these days, due to cost and other logistics is to begin with minocycline and if response is poor, then to add the clindamycin and/or additional oral adjuncts.

An additional concern is that there are some SDers who have been on immunosuppressant therapy and may have underlying chronic infections, as a result, or they may just have different triggering infections.

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Beginning-23522

“Clindamycin is given to eradicate long-standing L forms of bacteria resident in the gut, respiratory tract, genito-urinary tract and other areas to allow greater permeability of the tetracycline family of antibiotics and diminish the variables of disease. Clindamycin is concentrated in the phagosomes of the neutrophils, and therefore accumulates at the site of inflammation.”

[RevereRosie]

I’m also on the Harvard Protocol 100 mg of minocycline twice a day. I have Rheumatoid Arthritis with overlapping Scleroderma. I’ve been on the mino for 6 months now and I noticed subtle changes for the better. My fingers are are still swollen and look like fat sausages. My feet don’t swell up anymore. I live in Florida so I take advantage of the weather and exercise in the pool where it hurts less.

Lately, I’ve noticed discomfort on the back of my legs when walking. If I go to more that three stores doing errands, my feet and legs hurt. I have to discuss this with my doctor soon.

[kater]

Hi Tacket
as Maz says not everyone with SD needs IV Clindy. It would be useful to get tested for Lyme through Igenex and also Mycoplasma infection which seems to be common. I have both so needed more aggressive treatment. Also if you test positive for myco then your insurance might cover the IV but mostly it is out of pocket expense. I did the same thing as Maz, get the line inserted and run the IV at home. If you add hotel costs on top it is huge so this is great if you can find a doc to do this. Good luck with your treatment!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[richie]

Hi —I dont know why Dr Trentham said that -but remember the purpose of the Harvard protocol was no ivs —HEnry Scammell when I met him also mentioned that Trenthams approach eliminated the use of ivs —None of his thousands of patients were given ivs –Trentham developed the Harvard Protocol {thats why its named so -he was part of Harvard Faculty Medical Associates }–it was actually a strict regimen with a careful two hour window -pelleted capsules only -a minimum of supplements etc —the same approach was used in MIRA studies for RA –200 mg daily no ivs —MIRA had a 60% success rate –the last time Trentham discussed results for scleroderma was about 2004 at a RBF luncheon in Boston –he claimed an 80 something % success rate —based on all the folks I keep in touch with who are his former patients -he had outstanding success in treating SD —I think folks are being misled when a statement is made “not all folks with SD need clindy ivs ” In fact -its the other way around –most people do not get ivs —

[richie]

Anyone with scleroderma should read “Scleroderma -The Therapy That Can Save Your Life ” BY Henry Scammell –it provides lots of factual knowledge along with clarity ==And provide many answers to questions that are raised —

richie

[Maz]

@richie wrote:

Hi —I dont know why Dr Trentham said that -but remember the purpose of the Harvard protocol was no ivs —HEnry Scammell when I met him also mentioned that Trenthams approach eliminated the use of ivs —None of his thousands of patients were given ivs —

Yes, the purpose of Trentham’s Harvard Protocol was not to include IVs, but he was also centered in the “halls of academia” at Harvard where critical eyes are cast on any researcher and, as proof of an infectious cause was (and is still) debatable, there was a need to run a trial within accepted parameters. His trial was an early one with a very small group of study subjects. There was no placebo-controlled group and no other arms in the study that could have included those on minocycline as well as those on minocycline and IV clindamycin (or other drugs). After the success in his small trial, he had some experiential grounds to prescribe the protocol that was used in his trial to other scleroderma patients, but this did not include IVs. It’s my understanding that this doc was under quite a bit of pressure from his colleagues for his divergent approach and his MIRA trial presentation was not received with a round of applause. By some, he was even considered a quack for his chicken collagen studies (ironically, hyaluronic acid, made from a chicken’s comb, is now being used in joint injections for arthritis, known as Synvisc!).

After his retirement, we discovered that none of Trenthams’s Harvard rheumy colleagues, even within the same practice, were willing to take on his AP patients, many of whom were in remission and we had to find them new AP docs. Can you imagine if he’d included IV clindamycin in his trials? With minocycline, he was able to focus on its inherent immune-modulating properties, not for its antimicrobial ones. I think for these reasons, this is why Trentham never used IV clindamycin….he would have been targeted for medical license removal and fired. Some of his rheumatic patients have commented, however, that they were given azithromycin in addition to minocycline. It’s not clear why he would have done this, but it’s easy to suspect for a microbial cause.

Trentham developed the Harvard Protocol {thats why its named so -he was part of Harvard Faculty Medical Associates }–it was actually a strict regimen with a careful two hour window -pelleted capsules only -a minimum of supplements etc —the same approach was used in MIRA studies for RA –200 mg daily no ivs —

Yes, trials and studies have to have as few variables as possible to ensure that the medication being studied will result in measurable efficacy. If he had used IVs and minocycline together with no other study arm (minocycline only), then it would have been impossible to know which antimicrobial was most effective (and for the reasons above).

MIRA had a 60% success rate –the last time Trentham discussed results for scleroderma was about 2004 at a RBF luncheon in Boston –he claimed an 80 something % success rate —based on all the folks I keep in touch with who are his former patients -he had outstanding success in treating SD —I think folks are being misled when a statement is made “not all folks with SD need clindy ivs ” In fact -its the other way around –most people do not get ivs —

The intention is not to mislead, Richie. It means what it says, “Not all SD patients require IVs.” This might mean 1 out of one hundred SDers or 99 out of 100 SDers. We don’t know, because no studies have been run that include both a minocycline and IV clindamycin arm for SD. It’s possible that the 20% of SD non-responders would have responded had they been given IVs. Many SDers here report that they improve significantly after an IV booster. These are considered anecdotal testimonials, much as Trentham’s 80% success rate of his patient population was anecdotal, because he never recorded and published his long-term clinical experience of minocycline (in his practice’s SD patient population) in any peer-reviewed journal. It’s one thing saying this openly to a convention of RBFers, but quite another to be presenting it to the ACR or a conference of his Harvard peers, without substantial statistical evidence. In this case, sadly, the “publish or perish” adage is true.

All this said, Trentham, etal, did much to help the rheumatic community in terms of providing legit grounds for minocycline to be classed as a DMARD. In his station, at Harvard, there wasn’t room for anything more than that and, had he done so, he would have been taking on the whole field of rheumatology at his own peril. So, we all do have much to be grateful for in terms of what he was able to achieve.

Those who choose IVs do so on the advice of other experienced AP docs, based on their clinical experience of the treatment, and who are testing them for infections, believing they will do better with the combination treatment. As you used monotheraapy – minocycline – and it took you 5 or 6 years to reach remission, it’s possible you might have reached remission quicker with IV therapy. It’s also possibly you might not have achieved remission if you had complicating chronic infections. This is why – and based on decades of Dr. Brown’s experience as a practicing rheumatologist – some SDers prefer to use IV clindamycin. As described in the link above, starting therapy with the IVs was believed by Brown to increase receptivity of the oral tetracycline by eliminating pathogens in the gut, genito-urinary tract and respiratory systems. The sub-set of SDers who do choose IVs want to take a more aggressive approach to treatment and to increase their chances of a more swift response.

Ultimately, it is up to each individual which path to treatment they are going to use, once they have read all the material on the site and in the Scammell books. Your experience of minocycline is an important one, but much has been learned in just the last decade about how so much of the immune system depends on gut function. Rheumatics have compromised immune function, just by virtue of the fact that they have an autoimmune disease and this predisposes them to chronic infections, either due to reduced immunity or compromised by immunosuppressant therapy. For instance, why does flagyl work so well for SDer’s gut pseudo-obstruction? It just makes good sense that if someone has struggled with repeated infections throughout life that clearing resident infections makes good sense. In straightforward cases, like yours, this may not be the case, but one only has to look at kater’s amazingly quick response to combination oral and IV therapy to see that in some cases, this approach may be necessary….even if it’s just the 20% of cases that didn’t respond to Trentham’s monotherapy approach, this is important!

This can be discussed ad nauseam (and it has in the past), over and over, but the bottom line is that until oral minocycline is studied in a multi-arm, placebo-controlled trial (some with IV clindamycin and some not) for SD patients, we will not have verifiable stats to say that all, some or none on oral and IV will do any better than those on just minocycline monotherapy. Neither you, nor I can say it, which is why I said, “Not all patients will need IVs.” To say that “most” do better on just minocycline must remain in the anecdotal realm, when we don’t have the studies to confirm whether or not response is improved with the addition of IVs….just the clinical experience of Dr. Brown and, after all, for whom this foundation was founded.

[richie]

Trentham did not really buy into an infectious theory rather he leaned heavily to environmental causes –I wish I could dig up his old questionnaire which had many many questions relating to environment -The basic difference between Trentham and Dr Brown was that after IVS -Dr Brown believed in pulse dosing while Trentham believed in daily dosing –Incidentally Trentham was only the investigator on MIRA –ODell of Nebraska ran the study and presented it —I do agree there was never any publishing nor was the study really run according to proper norms —BUT the bottom line was that hundreds if not thousands of people got better from scleroderma using him

---

People came to see him from all over the world —Beth Israel Deaconess posted a sign in his office if an interpreter was needed –they had them for about 10 languages —I truly believe next to nothing is really understood about scleroderma–its cause –its treatment from the point of view of why minocin works so well on it —-For example the gold standard in treating teen age acne in m inocycline –it clears acne in a flash –exactly why ??/ –this tells me it has some kind of action on the skin —-Incidentally -we felt the cause of my scleroderma was chemical exposure while in the Air Force over 40 years ago at the time —As to Kates statement theres no money in antibiotics -minocin the brand retails at 14. per capsule —thats 28. a day –Good thing my insurance covers almost all of it –I used to laugh about the relationship years ago between DR Trentham and the RoadBack —-Each entity helped the other for their own reasons and own agendas -yet didnt really agree —-Another example Trentham did not buy into a herx for SD folks –right or wrong that was his thinking –It was a running gag that none of Trenthams SD patients herxed because he didnt believe in it !!!! –all said and done bottom line is me and many many other folks are better !!!!!!!!!!!

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