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How much is Too much?

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#1 berrydahl



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Posted 14 August 2009 - 12:55 PM

Hello All,

I have been reading like crazy here trying to gain more understanding of the disease many of us share. I was told that I have systemic Scleroderma by my rheumatologist. Other than that he does not tell me much...

My doctor has me taking multiple drugs and I wondered if any others out there are doing the same? From most of what I have read from previous posts most people seem to try one drug at a time. Currently I am taking Predisone, Naproxen, Plaquenil, and Arava (Lefflunomide) It seems excessive to me to be taking 3 different DMARDs. I also am taking medications for reflux and Raynauds.

I have a doctors appointment on Wed and I am considering discontinuing some or all very soon. I guess I have not noticed any great improvement with pain and swelling that is mostly in my hands and feet. Every time I visit the doctor he seems to add some thing new for me to take and doesn't remove something from the list.

I fear that I sound like a Maraca! :lol:
Not to make light of the possible side effects as well.

One more quick question if I may? Has anyone had intense pain in their hip area? I get the stabbing pains at night in my hands and feet and sometimes my jaw. Most of my joints actually, but the hip pain is the most unbearable. My doctor says it isn't related. Funny thing is it feels like the same kind of pain. I feel like someone snuck up on me and hit me with a big sledge hammer. Jolts me right out of a deep sleep. Very rude awakening! I believe he said it was bursae or something like that. The rude man said it was probably my advanced age (42) or weight... I have had no weight change beyond say 5 pounds in three years. The only thing new in my life is Sclereoderma. ;)

Thank you all for being here! I'm sure I'm not the only one here who feels a whole lot less isolated with this disease because of Sclero Forums.


#2 Guest_Giggles_*

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Posted 14 August 2009 - 02:58 PM

Yes I have bursitis in my hip! I get it quite often! it can be excruciating at times! I put it in the sclero box! I get the most terrible pain in my hands, arms and feet too! I don't have treatment for my raynauds! I was never offered it! though I am given strong pain killers for the pain. I can't take anti inflammatorys as I have severe Asthma and COPD that is effected by them. I use inhalers and a nebulizer for my lung disease.

I think it's best to take as little medication as possible for the symptoms, other than painkillers and a proton pump for the reflux disease I don't take anything for the symptoms! I was given motillium for the nausea/sickness but I read on here that they don't allow it in the U.S as it isn't safe so I've stopped taking them.

(I'm in the UK)

I'm not a doctor but it does sound like you have bursitis to me.

Welcome anyway, you'll find lots of support on this wonderful forum :)

#3 Kamlesh


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Posted 14 August 2009 - 04:37 PM

Hi Connie,

It is natural for you to find as many sources of information. Scleroderma has number of side effects such as joint pain and depression is pretty common.

Starting aggressive treatment helped me a lot. I was finally diagnosed Systemic Scleroderma in 2005 and having symptoms almost from 1998. I was on Cellcept, max dose of 3000 mg for over two years. I have Raynauds, but I take medications in colder months only. I also had acid reflux, but surgery corrected the problem. I still have major issues with lung capacity and severe cough, other than I am so fortunate to be doing so much better.

Simply take it easy, get proper treatment, and wait. It is going to take time!
Kind regards,


#4 alice1


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Posted 15 August 2009 - 07:47 AM

I had stabbing pains usually at night, in my legs in the beginning but it went away a year or so down my 6 yr.road w/ SSc.. I too am on Cellcept only.

Kamlesh are you off Cellcept? I'm down to 1000 mg but I can't seem to get off of it without the SSc coming back.