Scleroderma treatment

[Sharon]

Does anyone have experience with using the medication Gleevec for scleroderma.  I was diagnosed with systemic sclerosis about 5 years ago.  I took Minocycline in the beginning and did very well.  I stopped taking it after about one and a half years and I can't remember why.  I think that I was doing very well and at the time I did not like the idea of taking so many antibiotics.  I was diagnosed with lung cancer about one and a half years ago.  I am currently feeling quite a lot of tightness in my skin and seem to have had a flare up of the scleroderma over the past 2-3 months.  The tightness is mostly in my face, hands and arms to the elbow, loss of more mobility in my wrists and now I also feel the tightness in my feet, ankles, legs and across the back.  I'm hoping that this is due to stress.  I am seeing my Rheumatologist next week. Gleevec has been mentioned in the past and so I thought that this would be a good place to get information from those who may have used this medicine.  Also if there are any other recommendations they would be greatly appreciated.

Thank you, Sharon

 

[Maz]

Hi Sharon,

Just thought to post a little note to you in order to bring your post back to the top of the page. Weekends are occasionally slower here on the BB and it might help other sclero patients to see your post, so they can reply before your thread sinks much lower down.

So sorry you're seeing a return of your scleroderma symptoms. Although I'm not a scleroderma patient, myself, as I understand it from reading the many posts here, even when remission is reached on minocycline, most people expect to remain on mino for life for sclero….even if the dose is reduced to a low pulse dose for maintenance.

I just did a little search on wikipedia on Gleevec and it sounds like it's a pretty potent anti-cancer drug. Is this being prescribed as an adjunct to your run-in with lung cancer or specifically for your sclero? You mentioned being tentative of being on antibiotics, but you're probably no doubt already aware (being an old AP veteran) that minocycline is prescribed longterm for kids with acne and is relatively innocuous when compared to some of the other rheumatoid drugs out there. As you did so well on minocycline before, had you thought of going back on it? Also, perhaps seeking out an AP physician who could give you a jumpstart on IV antibiotics might be an option to consider.

If you'd like a listing of AP doctors to help you with this, just jot a note to apdoctors@roadback.org noting your city/state and if you are also willing to travel to the most experienced physicians in the US.

Cheryl F is very well-versed on the many options for sclero patients and there are few sclero patients who still frequent the board to help out with support. Richie, a long time Road back volunteer, as well as Lynne G, Kim or Steph may be able to give you some better insights.

Sorry you've had to make a return to the board, but just wanted to extend a warm welcome and to wish you well in your decision-making.

Peace, Maz

[Cheryl F]

Sharon,

As far as I have seen, Gleevec has not been discussed on this bulletin board, as the focus here is the Antibiotic Protocol and not necessarily the other treatment options available for the various rheumatic illnesses. 

However, the bulletin board for the Scleroderma Foundation has several frequent participants who are participating in the Gleevec Trial.  I would recommend that you log on to that bulletin board and do a search to read the posts that are about Gleevec for scleroderma.

Good Luck,

Cheryl

[Joe M]

I posted a research article about Gleevec and RA a couple years ago.  Here is one version:

http://news.healingwell.com/index.php?p=news1&id=534948

[Kim]

Hey Sharon,

So sorry your SD has reared it's ugly head again.  I do not know anything about the Glveevac treatment so cannot weigh in on your original question.

When my AP treatment for SD hit a lull, I had a round of Clindy IVs which really jump-started things for me.  Following the 5 day (2 x daily) round of IVs, I then took a combo of pulsed oral Mino and Zith which seemed to be the best combination for me.  Don't know if you've tried the IVs, but if not, would highly recommend this as most people show improvement shortly after having them.

Best wishes to you……kim

[DianeWI]

Hi Sharon,

If you can tolerate the Minocin/Minocycline, you should think about staying on it.  Minocin or Minocycline is one of the only antibiotics that the mycoplasma does not become resistent to.  It is far better to control the symptoms then to get off completely.  If you are experiencing the tight skin again, please get back on.  If you can, it would be most helpful if you could get some Clindo I.V's to jump-start.

I have been on the AP for 16 years.  I did get off for one year and all the symptoms came back with a vengence.    It sounds like you could be experiencing some of the same things.  I started to slowly get worse the none day, I couldn't get  up on my own accord again, so I had to resart AP with the I.V.'s and have remained on program since.  I do change the protocol once in a while when I feel things need to be  tweeked. 

Most SD patients do not get off progam completely.  Its too much of a risk.

Hugs,

Diane/WI

[annie from hawaii systemic sclero]

Sharon,

I'm very sorry to hear about your cancer and return of your sclero.  First, I would start by answering the question… what can I do now to calm my immune system? Nutrition, rest, getting back on minocin/IV clinda, etc….  I would strongly urge you to be sure your oncologist and rheumatologist are in VERY close communication with one another, knowing what the other is medicating you with.  Depending on the stage/type of lung cancer and other organ functions, I'm going to guess your treatment decision will have to take into consideration many factors.  Please keep us updated on how you're doing…. Blessings, annie

[june]

CAN ANYONE TELL ME WHAT THE MAINTENANCE DOSE OF MINOCYCLINE  IS FOR SCLERODERMA?  I AM NEARING THE END OF THE DISEASE FROM HELL AND NEED TO KNOW THE MAINTENANCE DOSE.

THANK-YOU

JUNE 

[Lynne G.SD]

Hi June;
     I am in remission but every now and then when I eat the wrong things or get over tired I start to feel stiffish in my hands.Often a nap or hot shower fixes everything in just half an hour.I take only one monocin capsule evry other day or so and do just fine on that dose.

[Maz]

[user=749]june[/user] wrote:

CAN ANYONE TELL ME WHAT THE MAINTENANCE DOSE OF MINOCYCLINE  IS FOR SCLERODERMA?  I AM NEARING THE END OF THE DISEASE FROM HELL AND NEED TO KNOW THE MAINTENANCE DOSE.

Hi June,

Great to hear you've done so well and are ready to drop your dose! Way to go! 😀

I don't think there is a standard protocol for maintenance, as everyone is unique. It's likely more of a feel as you go kind of thing. I personally would not drop my dose very quickly if I had scleroderma…nor with RA, which I do have. Having been so ill, I just could not face going back to that dark place again. So I think I'd drop it very “low and slow,” pretty much the same “rule of thumb” as when starting AP. If I was on the Harvard Protocol of 100mg twice a day, I might drop it to 100mg plus 50mg every day for several months and then drop again to 100mg every day, etc. If I noticed symptoms returning, I'd up it again. A nice goal would be to reach Lynne G's dose of 100mg every other day or MWF.

I spoke recently to a lady up in Canada who was on Dr T's Minocycline in Early Diffuse Sclero trials and she is completey in remission and has been off all antibiotics for about 7 or 8 years, I think she said. So I think it can be done, but I'd rather play it cautiously until I felt sure the beast was definitely exorcised for good.

Thanks for sharing your good news!!! And, if you feel ready, we'd LOVE to have your remission testimonial for the main site. These success stories are just so powerful to newcomers and it's a great way to pay it forward for years to come. 😀

Peace, Maz

[richie]

Hi–Gleevac an excellent drug for treating  certain forms of leukemia –it is beeing tested for many many things including scleroderma —However in my opinion the gold standard for treating scleroderma is minocycline or minocin –So many people have done well with using the antibiotic –myself included –PS I still take it after 10 years with no side effects and complete remission —THe primary reason I still take it is my opinion that relapses can occur —

richie

[Author]

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