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Posts posted by Inibini

  1. Dear Joelf,

    Thanks so much for the response. Seems prednisone had good effect for you (although it turned out an expensive experience...!).

    Do you think it might damage the tissues of the fingers and toes to have them go numb every night due to the swelling? Should I insist to get a new assessment (now on low dose Hydroxychloroquine 200 mg per day)?

    As is right now I feel only way to avoid the swelling and numbness is to sleep in a chair! Or never sleep!!

    Thanks again!


  2. Hi, 

    I have after my 40ies developed problems with numbness of my hands, Raynauds and autoantibodies with centromeric pattern as well as some mostly mild problems with arthritis and tendinitis. Suspicion is systemic sclerosis, but too early for a diagnosis. I hardly have any skin involvement. And nail capillary microscopy was uncertain, vessels looked borderline normal. A year ago the numbness of my hands, which mainly happened during night or while riding a bike, reading a book - anything requiring elevation of my arms or flexing of my wrist - took a new course. Before it had been looking like carpal tunnel and also like problems you get if the nerves in the elbow are impinged, but after examination could not be proved to be anything like that. So I coped with it, waking up multiple times during night, shaking my hands alive. No more reading books holding it straight up from my body when lying on my back, etc. 

    Last year instead my fingers started to feel swollen during night time and if I woke up they’d feel like sausages and in some cases hard to fold in mainly because of the swelling it seemed. The last few months the swelling has intensified and it can happen just while lying down for an hour during the day too. As soon as I get up for a while it goes away within minutes or within the hour, and I would never be able to show a doctor any proof of this phenomenon. During day my fingers looks perfectly normal except for two hard bumps on my right index, and an aching pain that comes and goes in that finger as well as my right ring finger.

    It is not any longer clearly resembling carpal tunnel in that there is no clear tingling sensation that may be eliminated by waving my arms and fingers to get the circulation going again. Now it’s still numbness, but with focus on the swelling as a mechanical phenomenon which goes away when my body is elevated. The same thing actually seems to happen to my toes.

    Does anyone recognize this? And would anyone be willing to share detailed story on how their fingers developed from the swollen phase to the phase where the skin is affected on the fingers? Did it happen fast or slowly, and what did the phases feel like? That would help me very much because as long as I do not have a diagnosis I’m ”on my own” with no doctor willing to meet me more often than once a year..

    Thanks so much!

    Kind Regards




  3. Hi!

    I’m having more and more problems with my hands during night time; the problems come as two parts: swelling and numbness. The swelling is my fingers being swollen in the night and the morning, problem to make a fist. But does not hurt. The other part is numbness which is very much like carpal tunnel syndrome because my fingers get numb, mostly the little finger and the ring finger, just like the symptom picture for carpal tunnel. Sometimes also other fingers such as thumb and index. However, I have had this checked (because I keep waking up a lot!! And need to exercise my hands) and performed all sorts of physiological tests, but everything seems normal. So I’m thinking the mechanism might be different from the carpal tunnel people without SScl get. Could it be that the latter is due to vessel leakage and the former due to compression of nerve due to tightness of the tunnel from other reasons?

    I’m wondering because carpal tunnel surgery probably will not help me if the cause is different from regular carpal tunnel. No doctors seem to be able to provide an answer. Any experts out there? Theoretical or clinical?

    Kind Regards

  4. Hi!

    I just experienced almost two weeks of flu with fever, and I have the impression that my symptoms from systemic sclerosis became much worse during my disease. It does make sense in a way, but I just wanted to check if anyone else recognized this.


    Since I started with Plaquenil in the beginning of November my fingers and hands were much better, initially I had problems with Carpal tunnel symptoms and numbness/swelling of my fingers in the mornings. My doctor said it’s not due to regular Carpal tunnel symptoms, but to leakage of the small vessels causing numbness and swelling. During the flu everything became much worse, I even felt numbness of my arms and I could not feel almost anything in a couple of my toes. I hope things will go back to normal again once I’m well. Another thing I wonder is if there are others experiencing no or little sensation in toes. It’s not an entirely new symptom just much worse now than before. 

    When I google I find out that Plaquenil belongs to Dmards and has an immune-modulatory effect, and where I live it is classified as immunosuppressant which entitles you to free of charge flu-shots. Nevertheless I got the flu and I know this can happen; that the shot does not offer 100% protection. But does anyone know if Plaquenil makes you more susceptible to infections in general? Or is it just in theory?



  5. 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

  6. 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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