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Calcium Channel Blockers

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#1 mammagigi



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Posted 13 November 2009 - 11:05 AM


I am new to this site. I was diagnosed with scleroderma/dm polyositis/mixed connective tissue disorder 16 years ago at the age of 29. I have severe muscle wastage and massive calcinosis all over my body, which is probably the most troubling due to the constant infections involved. I currently am only on steroids for treatment and other medications for side effects of that, ie hypertension, osteoperosis, potassium deficiency, as well as constant antibiotics and pain medication daily.

I have tried lots of other treatments over the years including iv immunoglobulin and other immunosuppressants. There has been nothing exceptional although the calcinosis did not form so rapidly during the iv treatment. My main focus at the moment is the calcinosis. I have found some interesting research on the use of "calcium channel blockers." I'd like to know if anyone is using it or has tried at what results.

Look forward to hearing from anyone! By the way I live in Australia.

Hope you are all coping as best you can as it's the challenge we all constantly face and also getting creative with alternative means of getting by!

Maggie Posted Image

#2 Jeannie McClelland

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Posted 14 November 2009 - 01:25 PM

Hi Maggie,

Welcome to the Forum! I'm really sorry you are having such severe health problems and have not had successful treatment. I'm glad you found us though. We have a number of members from both Australia and New Zealand.

We recently had a thread on Calcinosis which you might want to read, so I'm putting up the link for you and anyone else interested in the subject who might have missed it. Also, here is a link to the Calcinosis page on the Main ISN Site.

I've done web searches on the use of Calcium Channel Blockers (CCB's) in the treatment of calcinosis in order to see if there was anything helpful to you and unfortunately this article seems to sum up the various treatments, including CCB's, that have been used pretty succinctly:

Calcinosis in rheumatic diseases. While warfarin, colchicine, probenecid, bisphosphonates, diltiazem [a CCB], minocycline, aluminum hydroxide, salicylate, surgical extirpation, and carbon dioxide laser therapies have been used, no treatment has convincingly prevented or reduced calcinosis. However, the approach to calcinosis management is disorganized, beginning with the lack of a generally accepted classification and continuing with a lack of systematic study and clinical therapeutic trials. PubMed. Semin Arthritis rheumatologist. 2005 Jun;34(6):805-12.

There seem to have been very small studies and single-patient case reports that suggest a possible improvement after treatment with CCB's, but nothing I would call current or convincing. Not what you wanted to hear, I'm sure. Posted Image

It seems to me that the scleroderma spectrum of diseases is at last attracting some serious attention and research. Hopefully since calcinosis has such a profoundly negative effect on quality of life, research will be directed to finding an effective treatment, if not preventative. We can hope they hurry up with it, eh?

Best wishes,
Jeannie McClelland
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#3 janey


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Posted 16 November 2009 - 04:49 AM

Welcome the Sclero Forums! I'm sorry to read about all of the problems you are have with calcinosis. Jeannie has supplied some great links so hopefully you'll find something there to help you. Knock on wood, but I've never had any problems with calcinosis so I can't over any additional help with that.

I'm another one of the MCTD people with sclero and polyomistis. I've been getting the IVIg treatments now for 5.5 years. I started at 3 days/month but am now up to 3 days/8 weeks. It's the only treatment that keeps my CPK down and and probably has helped with skin fibrosis since I have none. Sounds likes you've had lots of different treatments like many of us. I guess it's just finding something that works for you. I hope you find something for the calcinosis!
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#4 mammagigi



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Posted 17 November 2009 - 01:05 PM

Hi Janey..

Thanks for the welcome...so do you have calcinosis?

Also have you come across any recent studies supporting the IVIG treatment as I was taken off due to lack of supporting evidence as my specialist no longer could justify the cost to "the powers that be". I was on large doses for 3 years 5 days out of the month anad although I still had calcinosis it wasn't anywhere as bad as it is now.

The whole thing left a bad taste in my mouth so much so that I just refused to see my specialist for over 2 years (just my general practitioner for meds). I know shocking. It was also my way of avoiding hospital for a while and I think I just hit saturation point from long periods in hospital with 2 young children. Every student doctor and wannabe specialist buzzing around and prodding and poking even after having no students stamped on my file and my door. They sometimes think it just shouldn't apply as their investigations are more important. Yeah right I had a simple question to sort them out: if by meeting me they would anyway be able to offer any benefits to the disease as in were they going to specialise in it, research, anything?

Sorry got carried away had to have my spit then after 16 years of in and out of hospitals I've just had so many bad experiences. So if you have anymore info about IVIG that would be great as I may be able to use it to fight my case.