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Inibini

Prevention of disease progression?

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Hi!

 

I’m a 47 year old woman. My rheumatologist says that I most probably have early systemic sclerosis (SSc). It all started many years ago with arthritis. It was 18 years ago just after I had my first child and I recovered and almost forgot about it. 2018 it happened again. Same joints. Also big problem with my feet (plantar fascitis) and achilles tendons. Before that in 2015 I developed Raynaud’s and was found to have centromeric autoantibodies and carpal tunnel syndrome, but no skin involvement.

 

In October last year my fingers started to swell night time so that it was hard to make a fist in the morning. But nothing from the skin, and all in all I feel okay. My doctor looked at my nailfold capillaries and said they looked like his, but when I read my medical records I saw he had written that they were quite far apart and asked himself: ”normal...???”. Which made me terrified.

 

Because of the arthritis (even if mild) and the carpal tunnel syndrome and swelling of hands my rheumatologist suggested hydroxychloroquine 200 mg per day for me. After 5 weeks I had very little swelling and numbness of my hands and I have had Raynaud’s happen only once since the beginning of November. My doctor said I really do not need the meds, I’m too healthy, but because of my problems with my hands affected my sleep so much I could try this, and it was extremely effective.

 

I feel as if he is not sure what to do with me. As if he is experimenting. Or he is not telling me all that he is thinking; trying to calm me but just making me more worried. And at the same time I feel I am a ticking bomb and willing to try this medication if it can prevent something worse to happen. I have read research and realize SSc the limited type may develop very slowly over more than ten years. I fear this is what is happening to me. And I wonder if someone knows if hydroxychloroquine may slow down a potential disease progression? I’m also scared of adverse events if I was to take it over many years. And at the same time scared of what would happen if I took a treatment break? Because I think I need to do that during summer time. 

 

Any advice or comfort would be very much appreciated. Thank you so much!

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Hi Inibini,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with possible limited scleroderma. Because of the nature of the disease, scleroderma is notoriously difficult to diagnose and treat, which is why we always advise our members to consult a listed scleroderma expert. Unfortunately, many general rheumatologists do not have the knowledge and expertise to treat this disease correctly and the feeling that your rheumatologist does not quite know how to deal with this is a fairly common one.

 

As regards the hydroxychloroquine, this is a recognised medication for scleroderma; many of our members have had successful results from using it (although I've never taken it myself.) You are correct in your assumption that limited scleroderma can develop more slowly than diffuse scleroderma, although this does depend on how it affects each person. For instance, I have limited scleroderma with lung involvement, which was galloping on at rather an alarming rate when I was first diagnosed. However, having had the disease for eleven years, I'm pleased to report that in my case it has stablised and my lung function is well above normal rates (my consultant has told me that they could pull people in off the streets with worse lung function tests than mine. :wink:) I was treated with immune suppressants and steroids and I felt as you do, that I wasn't particularly keen to take such strong medication; however, upon further thought I soon realised that I either took the drugs or died, which does tend to concentrate the mind wonderfully! :wink:  I wouldn't recommend discontinuing your medication, without consulting your rheumatologist.

 

As far as the disease could progress, of course without the benefit of second sight it's impossible to predict the outcome. However, I would say that a positive attitude goes a long way.

 

Kind regards,


Jo Frowde

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Dear Joelf,

 

Thanks so much for providing your insights, this is very helpful to me. I’m happy to hear that your lung involvement actually calmed down. 

It is also encouraging to read all the stories and realize that I’m not the only one with problems getting a proper/final diagnose, I could also read some posts in relation to doctors being reluctant to establishing a final diagnosis due to potential insurance issues. For me (as for many others it seems) it is a difficult period of not knowing, and also it makes it tricky not being able to explain to colleagues/relatives/friends what all the symptoms are about. 

I would not dare stop my medication without consulting a doctor, but the problem is that my doctor kind of left the decision for me. He said I could more or less decide if I wanted to take it or not. And he said some doctors advise treatment breaks and some not. I think I need to get a more specialised doctor in some way. Which is difficult as long as I’m ”too healthy”. I think this is a pity because from what I read it’s really important to discover symptoms early and treat them to prevent irreparable damage.

I’ll try to find out who is the best doctor to see in my country/city. 

Thanks again,

 

Kind Regards

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