Newly diagnosed scleroderma

[luna_lovegood]

Hello. I just got diagnosed with Diffused Scleroderma and now my Rheumatologist wanted me to start Mycophenolate. So devastating to hear my diagnosis. I suffer from sausage-like, tight, difficult to bend fingers. Few skin hardening on forearm and thighs. Raynaud's since 2022. Any possible side effects of Mycphenolate to expect? Will this be a lifelong medication? How long for them to take effect for you?

[CountessOfBlack]

Hi Luna

I'm sorry you have to go through this - it's a hard task to accept this diagnosis... I felt absolutely helpless at the beginning, but it got easier over time... I wish you lots of courage and strength!

I started CellCept in May 2023 and only had mild side effects (nausea and dizziness) the first few weeks. I'm supposed to take them longterm, probably for the rest of my life.

I noticed a slight improvement in the skin after about three months. For me, the effect was not sufficient (I have lung and heart involvement), so I now get rituximab infusions every six months. They hopefully help the skin as well...

I have similar problems with my hands/fingers. I often wear compression gloves at night, which helps a little. They were recommended in occupational therapy (not sure if this is the correct english term?) Maybe you can ask your doctor abot this? There are also acupressure rings (I think they are an ayurveda thing) that can be used to massage the fingers, no long-term effect, but they bring some relief.

Take care!

[Jules1821]

Hi Luna, so sorry to hear of your diagnosis, sending you a big hug. This is a good hub for advice, I do not take this medication .... yet, as I was given my diagnosis over the phone, I will know on 9th August, and will happily share my experience if I do x

[positivedaybyday]

SO sorry to hear of your diagnosis I had a similar shock in 2017 (Acute Cutaneous Diffuse Systemic Sclerosis ) It's important to remain positive & fight this disease as much as possible. You're on a steep learning curve & as time goes by you will be more aware of your body. I was given lots of leaflets from the hospital so I have a folder for them. I have a separate folders for copies of hospital consultation notes. In this way you can check anything asked of your Dr happens.

It's a good idea to write a daily diary of how you're feeling both physically & mentally so you can discuss with your Consultant at each visit. Prepare for each appointment by listing a few questions you may wish to ask. Take a friend or member of your family with you on appointments. Ask them if they can jot down answers to questions for you or any important information.

At the beginning it can be a blur, this method helps you not miss any important information. It also helps family/friends understand the disease & how it affects you individually.

Ask any questions from this site or air any worries. We're all in the same boat in one way or another. As each case is different in severity you can exchange information.

My Rheumatology team is fantastic. Nothing is too much trouble. There are many, many treatments you could be offered.

I was lucky to have a Hydrotherapy pool at my hospital. I had six sessions with a physiotherapist & then I was able to go each week to soothe my whole body.

Don't be afraid to ask for any help with any area of your body!

As for Mychophenolate I believe it manages the condition to prevent it worsening.

I tried it without any side effects but for me my disease was so acute it didn't slow the disease down.

I was in the early stages of this disease & thankfully had no organ damage.

My Roden score ( of the skin) had increased from the mid twenties to 48 in less than 6 months. The worst score was 51. The tightness was all over my body apart from my back. My situation was critical.

I was offered a choice! Continue on Microphenolate & HOPE that it kicks in at some stage OR I could be put forward for a revolutionary Stem Cell treatment.

I chose the latter, although at this stage it wasn't certain I would be accepted.

I had to undergo vigorous tests to ensure my body would cope with this invasive procedure.

To me I had no option but to go for it, even if they was a chance of dying as I couldn't carry on how I was!

For me its been a miracle! 6 years on I'm here & enjoying life as much as possible.

I hope I haven't frightened you too much.

Put faith in your team & ask as many questions as necessary to fully understand how this disease affects you personally.

Most people find Microphenolate works for them.

Good luck on your journey. Please come back & ask any questions at anytime! Xx

[George369]

Hi Luna, It seems devastating at first but don't let it get you down stay positive and work out a new life style to adapt. Everyone's case is different, but from personal experience Mycophenalate is absolutely useless, let me explain. I was hospitalized 18 months ago with diffused Scleroderma which flared up and damaged my kidneys (renal crisis) and with high blood pressure over 200. My fingers just as you say, stiff like sausages and my skin going hard like fish scales all around my neck and shoulder. At first they put me on Mycophenalate (Cellcept) for six months which did absolutely nothing to stop the disease and aggravated instead ulcers in my stomach causing serious internal bleeding. From discussions i realized Mycophenalate is something like a mild prevention drug, i.e . for very mild cases. Realizing that Mycoplenalate was useless, the doctors decided to put me on ENDOXAN for 6 months, which fortunately worked and halted the disease, apparently it went into remmision, symptoms stopped progressing, my skin softened and kidneys slightly improved. However my joints continued aching severely and also i developed muscle weakness especially in my legs, and also SIBO in my stomach. Esoecially the SIBO was terrible because i had no appetite, could not digest food and vomiting every night, I lost 15kg in 3 months. To treat all these, they put me now on IMMUNOGLOBIN which has worked like a miracle, i am really very much better now and so gratefull (!!!) thanks to God and all the people supporting me. The pain has stopped, i can walk properly now and my appetite has improved, and i feel like i am returning to normal life again. I hope your case remains mild and you can avoid all these complications, in any case brace yourself and get good doctors to support you, i wish you courage and faith in your journey ahead.

[ruablue]

Hi Luna - I remember being where you are just over 18 months ago - it’s understandable to feel overwhelmed as it is so daunting. I have been on mychophenolate since Feb 23 and it has definitely slowed down progression for me. I have lung involvement and it has managed to keep that at bay. I had a little nausea and tummy upset the first 2 weeks but have not had any side effects since. They are always hopeful to get the disease into remission with medication.

I too have the stiff, puffy sausage like fingers that are achy (especially in the mornings and late evenings). I have an overlap with myositis and Rheum Arthritis- at a recent review they have added hydroxychloriquine to address joint aches and muscle fatigue and this seems to have helped my aching puffy fingers too.

It is indeed an unnerving journey and I too reached out to this group on being diagnosed and have found it to be full of phenomenally helpful, kind and supportive people. Each journey of every individual is a little different as the disease impact can be unique but there are so many things we can learn from each other.

The key now is too really take care of yourself (both physically and mentally), be your own advocate on the medical journey - don’t be afraid to challenge, if you need to.

And use this forum as it is a mine of information, wisdom, insight and kindness.

Best wishes

[cheeselover342]

Sorry to hear your diagnosis but you are in the right place for support and reassurance. There is so much helpful advice from this group. I have been on Mycophenolate for Diffuse Systemic Sclerosis for 5 years now, with no side effects so far. Generally it takes at least 3 months to take effect, so hang on in there. I hope you find it effective and that it suits you. Wishing you all the very best.

[johncot]

Hi I was diagnosed 5 years ago and was prescribed mycophenolate 2gm per day. So far I've had no side effects and it has certainly made a big difference to my mobility and general well-being. Best wishes