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notlettingo

Just Learning about the Disease

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Just for your information:

 

Novo chloroquine is an anti-malarial drug. Some of these drugs are useful for autoimmune conditions. However, most common for this is hydrochloroquine. Many of us on the forum take this drug. It is also called plaquenil.

 

Flexeril is a muscle relaxant and is likely for Raynaud's, unless your doctor has said otherwise.

 

Adalat is a calcium channel blocker, and increases peripheral circulation, so definitely to help with Raynaud's.

 

If your Raynaud's is not adequately relieved, you may want to discuss with your doctor the possibility of taking one of the erectile dysfunction drugs (viagra [revatio], cialis, etc.) Many have had good results from these drugs. Nitroglycerine cream can also be helpful.

 

There is also an old blood pressure medication called prazosin (mini-press) that has helped some with Raynauds.

 

Sometimes the doctor may be hesitant to prescribe these vasodilating drugs because they tend to decrease blood pressure, which can lead to fainting. This can be easily monitored with a blood pressure machine available at any pharmacy.

 

Craig

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Hello NLG

 

The body of an 80 year old? Fantastic because I clearly have the body of a 90 year old, sorry but I have to outdo you...hey we should start a club! You see I have to have nurses come in twice a week to dress my foot ulcers...I am 43 not 93 for crying out loud! :angry: Once upon a time I was wearing beautiful shoes but now bandages and slipper boots...how the mighty are fallen! :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I'm not trying to outdo anyone as far as pain or anything else goes. I am just stating how it is for me. I guess I misunderstood the reason for a support network. I figured I would be able to express myself without offending anyone. so, heres hoping everyone with MCTD/Scleroderma has huge success with their treatment. I am off to conquor this disease!

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Hi Notlettingo,

 

One of the ways many of us cope with the disease is to joke about it and how it is affecting us. Right now I'd say I have both you and Amanda beat because today my body seems to think it is 100 years old!

 

It's hard sometimes not to see things as a competition: levels of pain, number of doctors seen, which complications we have. I think in some strange way certain complications may have a greater cachet than others. Does having pulmonary hypertension AND pulmonary fibrosis mean one has hit the jackpot? The real situation is that because of our own experiences we do understand what others of our community are going through. There are no winners or losers, it isn't a competition, and we could all say "I feel your pain" and mean it.

 

When so many of us have had to go through years of the "nothing wrong with you" wait for a diagnosis, been told we're lucky because we only have limited systemic sclerosis (what a misnomer that is), that we look really great so we can't possibly feel as bad as we say we do, we soon realize we have to develop a thick skin. And yes, I did intend that pun. :)

 

We don't have to satisfy anyone's criteria of pain level, shortness of breath, or how badly the cold affects us. We each have to live in our own reality - there is no other.

 

You haven't offended anyone and I hope you won't be offended by the occasional off-the-wall sense of humor. Read it as someone who is dealing with the things none of us want to have happen and who is still trying to laugh about it.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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