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How did finger swelling start for you?


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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

 

 

,

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Hi Inibini,

 

I'm sorry to hear that you've been suffering with unpleasant symptoms in your fingers. I did experience similar symptoms of very swollen fingers in the beginning; however, once I started taking prednisolone my fingers improved and became a lot less swollen. (Not as good as it sounds, as I spent an absolute fortune having all my rings made larger, only to have to spend another fortune having them reduced again! :wink:)

 

Swollen fingers are certainly a symptom of scleroderma, but they can also be symptomatic of other health problems as well, so are by no means a conclusive diagnosis.

 

Kind regards, 

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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!

 

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Hi Inibini,

 

Although it may not permanently damage the tissues in your fingers and toes, it's obviously not something you want to continue (particularly if it necessitates you having to sleep in a chair!)

 

As I'm not medically trained, I would definitely suggest that you go back to your specialist, explain your symptoms and ask for further advice on your treatment.

 

Kind regards, 

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  • 1 month later...

Hi there, new to the forum.

 

Recently diagnosed with CREST. Swelling of hands, increase  in carpel tunnel symptoms and in both hands vs just right and one finger experiencing Raynaud's. This was 7 years ago before autoimmune was in the picture.  Had carpel release and if your doctor recommends (if severe symptoms ask/insist on considering procedure) I would say do it. Hands more swollen now and probably would be unusable at this stage if not for surgery.

 

Had prednisone early on for swelling carpel pain, looking back I shouldn't have taken it. It threw me into a crisis, for lack of a better term, when done. Fatigue, joint pain increased after treatment with prednisone.  Current rheumatologist cautions me about steroid use, as some with scleroderma may developed renal failure, you must be monitored closely as well as dosage amounts.

 

Depending on your specifics the skin may become thicker, may not.  One of the most challenging things about this condition is the not knowing and having to wait and see for a lot of things.

 

Hope this helps.

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  • 2 months later...
On 8/29/2020 at 2:28 PM, Mary Sara said:

Hi there, new to the forum.

 

Recently diagnosed with CREST. Swelling of hands, increase  in carpel tunnel symptoms and in both hands vs just right and one finger experiencing Raynaud's. This was 7 years ago before autoimmune was in the picture.  Had carpel release and if your doctor recommends (if severe symptoms ask/insist on considering procedure) I would say do it. Hands more swollen now and probably would be unusable at this stage if not for surgery.

 

Had prednisone early on for swelling carpel pain, looking back I shouldn't have taken it. It threw me into a crisis, for lack of a better term, when done. Fatigue, joint pain increased after treatment with prednisone.  Current rheumatologist cautions me about steroid use, as some with scleroderma may developed renal failure, you must be monitored closely as well as dosage amounts.

 

Depending on your specifics the skin may become thicker, may not.  One of the most challenging things about this condition is the not knowing and having to wait and see for a lot of things.

 

Hope this helps.

 

Hi Mary Sara!

 

I'm prescribed with prednisone for CREST now too. I'm wondering, what was the dosage you've had? Current rheumatologist prescribed me 30mg per day, I think that's quite high one.

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Hi Tony,

 

Welcome to these forums!

 

Although prednisolone is a very effective medication (I've been on it for eleven years myself) it should be treated with caution when prescribed for scleroderma. I've included a link to our medical page Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma.

 

 

Of course, as every case is different, I would suggest that if you're concerned about the dosage you're using, that you go back to your rheumatologist (or preferably a listed scleroderma expert) and confirm the correct dosage with him.

 

Kind regards,

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Hi Tony

 

It was a long time ago I was given steroids, I don't recall the dose. It was well before any diagnosis, tho.
But what I've learned and is echoed by others is that steroid use with Sclero is risky.  You should be monitored (from what I understand) for kidney involvement/ complications.

I am currently on methotrexate as my symptoms could not be managed, pain gastrointestinal issues and fatigue. Now a year later I'm doing much better with all symptoms sans fatigue, although my tolerance for activity has improved.

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On 11/21/2020 at 6:00 PM, Joelf said:

Hi Tony,

 

Welcome to these forums!

 

Although prednisolone is a very effective medication (I've been on it for eleven years myself) it should be treated with caution when prescribed for scleroderma. I've included a link to our medical page Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma.

 

 

Of course, as every case is different, I would suggest that if you're concerned about the dosage you're using, that you go back to your rheumatologist (or preferably a listed scleroderma expert) and confirm the correct dosage with him. 

 

Kind regards,

 

Hi Joelf,

 

Thank you! This forum and website overall is the real treasure! So much information doctors never have time to explain :)

 

I think it's a bit offtopic to this thread, but not sure where to better ask for that: could you recommend some comprehensive literature (book or collection of articles) that explains all biological pathways involved in pathological scleroderma processes? 

 

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On 11/21/2020 at 6:13 PM, Mary Sara said:

Hi Tony

 

It was a long time ago I was given steroids, I don't recall the dose. It was well before any diagnosis, tho.
But what I've learned and is echoed by others is that steroid use with Sclero is risky.  You should be monitored (from what I understand) for kidney involvement/ complications.

I am currently on methotrexate as my symptoms could not be managed, pain gastrointestinal issues and fatigue. Now a year later I'm doing much better with all symptoms sans fatigue, although my tolerance for activity has improved.

 

Hi Mary Sara,

 

Thank you for the answer! Does methotrexate help you with fatigue a lot? I have a several issues related to CREST too but the most annoying are extreme fatigue and cognitive problems.

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