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questions on medications


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#1 KarenL

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Posted 03 April 2008 - 08:21 AM

This is probably a strange question, but what do plaquenil or steroids do for scleroderma? I'm not on any meds specifically for sclero. Long term use of steroids have all sorts of side effects, I'm curious what good they do, as my doctor have never even mentions meds..
Thanks,
Karen

#2 jefa

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Posted 03 April 2008 - 08:39 AM

Plaquenil (hydroxychloroquine) is a DMARD (Disease-Modifying Anti-Rheumatic Drug). It is the DMARD which has the least amount of side effects and seems to work by reducing inflammation and are helpful for improvement of blood glucose, lipids, and platelet aggregation. Many users report that it has reduced the fatigue element of scleroderma and rheumatoid arthritis. You can read about Plaquenil and other DMARDs on our Disease-Modifying Anti_Rheumatic Drugs (DMARDs) page.

Glucocorticoids or steroids (prednisone, prednisolone) also work on inflammation but in a different way:

Glucocorticoids are any of a group of steroid hormones, such as cortisone, that are produced by the adrenal cortex and are involved in carbohydrate, protein, and fat metabolism. Glucocorticoids have anti-inflammatory properties. They can be prescribed to dampen or stop the chronic inflammatory chain of events. Depending on the particular glucocorticoid that is used, inflammation can be affected at different points in the inflammatory pathway.

Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma. (Also see: What is Scleroderma?)

This information is from our Glucocorticoids, Steroids (Prednisone) page.

Hope this answers your question.


Warm wishes,
Jefa

Carrie Maddoux
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#3 KarenL

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Posted 03 April 2008 - 09:30 AM

Thanks so much for information,


Not to be dense, but your answer and information seems to indicate that we should NOT be on steroids, yet many people here on the list are. It reminded me, when a new post listed Medrol as a new med, and that is a steroid. I've heard lots of others who are also on prednisone. So why are they being prescribed something that is contraindicated in sclero?

I know that we scleroderma patients are a sophisticated informed bunch in general! :) Always ask your doctor about medications. Today I was prescribed flagyl for an infection. The nurse told me on the phone to stop taking prevacid, (for Reflux). I told her I could NOT do that as I have horrible heartburn and sometimes even need it MORE than the prescribed once a day. She checked with the doctor, and called me back, all sorts of apologetic, saying that there is a pack of flagyl that comes WITH a stomach acid rducer in the multi-pack. She thought that was what the doctor prescribed. My point--always ask if something doesn't sit quite right with you.

peace all,
Karen

#4 Margaret

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Posted 03 April 2008 - 09:33 AM

Hi Karen ,

Gareth's rheumatologist told me that Plaquenil "jump starts the immune system." It does not decrease the immune system's responce to infections, etc. As for weight gain, he put on 5 solid pds the 20 days in Dec/Jan that he was on Prednisone for pneumonia. He had not put on wt the previous 6 months that he was just on Plaquenil.

Take care, Eveyrone.
Margaret

#5 jefa

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Posted 03 April 2008 - 09:45 AM

The warnings about steroids causing renal failure are for LONG TERM use. There is a long list of notes on the page I gave you and obviously times when short term use is a good course of action in a particular case.

It is a good idea to be as informed as possible about all the potential treatments so you can intelligently discuss with your doctors.
Warm wishes,
Jefa

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#6 Alice02

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Posted 03 April 2008 - 04:01 PM

Hello everyone, I'm just trailed to be here on this wonderful website Sclero. You guys so knowledgeable and supportive. Most the time I'm so sick, yet I still log on to learn more and really have helped me emotionally. I'm suffering from this disease for more than twenty five years and just now that I'm learning from you all about stuff happened to me in the past. I am on Plaquenil 200mg, Prednisone 20mg, pain meds and still in severe pain 24 hours a day seven days a week. I asked my rheumatologist if he can give me cortisone injections, because they helped me in the past, his answered that was in past now I need to be evaluate again and went on talking very bad about another patient to his nurse. Of course he ignored my all questions and prescribed the same medications that I'm on and are not helping me, however, he did lower doses of Prednisone. But did not offer any suggestions as to how I can be evaluated. I thank him and went home, because that just the way how I am. I was never a difficult patient, but really hurt when you are in pain and have a doctor who is not sympathetic with you. But it just amazed me how some doctors are like that, not to say that all doctors are like this doctor. I do have a wonderful dermatologist/ surgeon who have helped me for many years even when I did not have insurance. . As of now I don't have any others alternative, because of type of the insurance I have. They are so many Scleroderma specialists, but it is sad that most of them do not take any type of insurance and if they do, they only take Medicare. I have question for you guys, has anyone take or have any information about a new pain medication called Lyrica?

I appreciate all of you wonderful people taking the time to answer my question.




Much love, Alice



#7 KarenL

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Posted 04 April 2008 - 01:09 AM

Hi ALice,

Where do you live? You should be able to find a scleroderma specialist that takes your insurance. And certainly one who gives you undivided attention. Scleroderma is a complicated disease and requires a whole team of doctors, ideally they will know and communicate with each other. I was lucky, a friend of mine is a nurse and he heard through the grapevine of this awesome angel doctor. Maybe you can look on this site for lists of doctors. My doctor is on there as a founder and contributor, Lee Shapiro. It will be worth it to travel to see a good doctor, even if you have to drive all day and stay overnight for the initial visit. Most will deal with you over the phone after that, and you will see them every 3-4 months in person. Good luck Alice, you deserve the best!
Peace,
Karen

#8 LisaBulman

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Posted 04 April 2008 - 01:41 AM

Alice,
Here is a list of scleroderma specialists in the United States. Hopefully you will be able to get to one of them and receive the treatment you deserve!

Hugs,
Lisa


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#9 Sweet

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Posted 04 April 2008 - 04:41 AM

Hi Karen,

I've only been on steroids as a taper regime, not any long term use, but I am on plaquenil and I couldn't function without it. It took a couple of months to kick in so I was on anti-inflammatory as well. But the plaquenil helps with the fatigue, pain and can stop the disease process in it's track, or at least slow the progression.
Warm and gentle hugs,

Pamela
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#10 Alice02

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Posted 05 April 2008 - 03:25 PM

Hi Karen,

I live in NY and they are many great doctors here, the problem is my insurance. I have been seeing by one of Scleroderma Specialist in the past. He is on of the leading Scleroderma Specialist in the world. But, since I lost my job and a long with my good insurance, I wasn't able to any good doctor. For now I just have to take what I have, I'm sure eventually it will get better. I just want to tell you all that your caring support means so much! It's through the efforts of sincere friends like you that we can continue to make along-term, positive impact on each other lives.





Love, Alice