Sclerodactyly treatment suggestions?

[SKivell]

Sclerodactyly diagnosis.

I was diagnosed with systemic sclerosis in September after suffering from Reynauds disease for many years and carpal tunnel syndrome more recently. Among other things this has now also locked my hands in to a claw shape which is called sclerodactyly. Does anyone have any reccomendations regarding successful treatments for this condition?

I have been put on weekly Methotrexate (immunosuppressants)and currently taking Prednisolone (steroids) daily for six weeks.

[SVBO]

Hi SKivell, when my daughter was first diagnosed 5 years ago, her hands were like you describe. After treatment (the same as yours + chemotherapy) + AIP diet + physiotherapy + playing on musical instruments + doing sports and dance, her hands are no longer locked. They are still quite bony and small but at least they are functioning well. So I suggest looking into exercising and diet adjustment which in sort: no sugar, no processed food and listening to your body if it doesn’t like any particular food (reflux, winds, diarrhoea, burning etc). Wishing you well

[SKivell in reply to SVBO]

Thank you SBVO. It's good to know there is hope for things to improve. I do keep myself pretty healthy but can always do better. I will up the anti. Best wishes.

[LucyJean]

Hi there, the most important thing for the management of your condition is to be on the right medical treatment, and you have already started a regime of this with your MTX and steroids. Hopefully your hospital will be regularly checking on the impact this is having on your condition and make the necessary adjustments to keep on top of things.The second most important thing is that you have a daily hand exercise regime and a splinting regime. You will need a referral to a physiotherapist and occupational therapist who are used to dealing with your condition. Most hospitals will have both in their out patient departments. If not then you will need a community referral or to go to a specialist unit. There are some hand exercises on the SRUK website that were done by a specialist physiotherapist from Salford.

Keep using your hands little and often. Use wax baths or warm water soaks. Moisturise, moisturise, MOISTURISE! (Do you get the impression that it is important ) Get your GP to prescribe a heavy duty emollient cream.

It is perfectly possible for things to improve. Don't think this is how things will always be!

Take care

Lucy xxx

[SKivell in reply to LucyJean]

Thank you LucyJean.I have another appointment in early November with the rheumatologist so will ask about those other specialists. In the mean time I will check the SRUK website for the exercises and moisturise, lots!

[positivedaybyday]

Hi SKivell,

I too have Systemic Sclerosis plus secondary Raynaulds. My finger joints started to bend about 6 months after the onset of SSE.

I was referred to the specialist hand team at the hospital via my Consultant.

I was given a booklet on hand exercises which I have continued to do since 2017. I've tried various physiotherapy methods too.

The jand team ssued me with a pair of very good steel black gloves which were lightweight. They helped me in the colder weather. I was also issued with a pair of support gloves, again I found them very useful. They did Taylor rigid supports for my hands which I was told to use at night. The idea was to try & stop my hands from forming into claws.

They did say it was worth a try but they didn't offer much hope of straightening my hands.

I found them very uncomfortable to wear & did trial these without success.

I continued with my hand exercise routine. I have found swimming has helped my hands as far as dropping items & although they are partially bent they haven't progressed further.

I also take a low impact exercise class using hand weights, again my hands are not as stiff.

I'm convinced the exercise classes & swimming are helping.

When you see your Consultant ask if they have any options for you to help your hands & hopefully you will get a similar support as me.

It is a worry the thought of hands turning to claws so we need to do as much as possible to prevent the worst possible scenario.

I take Sildenafil daily to help with the blood flow in my hands. This works too.

Good luck on your journey.

Xxx

[SKivell in reply to positivedaybyday]

Thank you very much.That is really helpful and hopeful.

[Sanmateogirl107]

HI ITS JULIE ASK ABOUT PRAZOSIN 1 MG, CELLOCOXIB 100MG OK. USE HAND EXERCISER AND RINGS TO SQUEEZE ON EBAY. FOR PAN I RECOMMEND WILD LETTUCE EXTRACT MT ROSE HERBS, EBAY HAS IT I USE IT WOKS GREAT. DO NOT GO OUT WHEN ITS COLD WEAR GLOVES OK SEE A RHEUMATOLOGIST RIGHT AWAY OR IMMUNE SPECIALIST DO NOT TAKE NO FOR AN ANSWER. LOVE JULIE

[SKivell in reply to Sanmateogirl107]

Thank you. I will give all that a go and talk to the rheumatologist. It's easy to get fobbed off.

[Sanmateogirl107 in reply to SKivell]

YOU HAVE ME FIGHTING WITH YOU. I BELIEVE YOU. REMEMBER OPTIONS AND TREATMENTS LOOK AT THE SCLERODERMA FOUNDATIONS, DOCTORS, SOCIAL WORKERS, HOSPITALS AND ASK QUESTIONS LOTS OF IT AND GETS ANSWERS. SPEECH THERAPY SAID FOR ME IF I GET WORSE FEEDING TUBES, I.V FOR FOOD STANFORD SAID NOTHING TO ME SO I AM LEARNING ALSO. FIND A GOOD DOCTOR STICK WITH THEM. MAKE SURE YOU HAVE FAMILY SUPPORT, THAT IS E VERYTHING, ASK ABOUT IHSS IN HOME SUPPORT SERVICES A CARE GIVER ALSO OK. SHOPPING, GET PRESCRIPTIONS, TAKE YOU TO THE DOCTOR ETC. WE ARE ALL A FAMILY SO I WILL TELL YOU ONE THING I LOVE YOU YOU ARE NOT ALONE OK. LOVE JULIE

[Magsterly]

Hi San Mateo girl. This is your Bay Area neighbor. I hope you don’t mind this suggestion but I would avoid using all caps. It can be very stressful to read, and I typically ignore those kind of posts. Some may skip over you and miss out on something important you want to share. Just a thought. 💕.