Viewing 9 reply threads
  • Author
    • #760

        Welcome Warriors! The Scleroderma Warriors Project is a program which connects those in need of support and direction with other warriors who are experiencing or have experienced a similar journey. This is a place to connect, learn, and grow. Introduce yourself and find out how things work. Laugh, chat and share with others.

      • #580

          Are you wondering about scleroderma treatments, drugs, wellness tips, and side effects? Let us know your experiences. Do you have any good tips for others? Are you looking for help? Let us know with a REPLY.

        • #662
          Kari Dickerson

            This looks like a new forum/site, but I am eager to break through the isolation and the vision and mission of this looks awesome, so I will take a risk and jump in.

            I had a marker in my blood work about 7 years ago that said I might develop CREST (systemic sclerosis), but I had no symptoms at all at the time and nothing else was done. Then several years later I started having difficulties swallowing but hesitated to do anything because I could manage it fairly well by how and when I ate. It might have just been acid reflux at the time, but not sure. Then Raynaud’s started in my fingers in Nov 2019. They dilated my esophagus in Jan 2020 and just wrote it off as acid reflux, no action taken except a prescription for Prilosec. And my primary care doc, when I shared my concern that I now seemed to have 2 of the 5 conditions of CREST, just said he “had lots of patients with Raynaud’s”. But the dilation did nothing to improve the swallowing so I would have had the procedure to test the swallowing except the pandemic shut things down. This all ends well in that a few months ago I moved to a different part of the state and despite being much more rural my doctors are taking it all, including my Celiac disease, seriously. In fact, the new gastroenterologist did a test that uncovered low IgA levels, so I now tell people I am collecting “ologists” – gastro, immunologist, and rheumotologist, in addition to dermatologist and ophthalmologist. The gastro doc is the first to officially tell me I have scleroderma, and the blood work ordered by the rheumo doc seems to have confirmed it, though the visit to discuss the results of his extensive tests is not until May 26th.

            Anyway, sorry for that info dump, but it helps to tell the story. I am thankful that so far I have no skin involvement…so maybe it is the systemic sclerosis sine type? But the risk of internal organ involvement is still scary. I am trying to stay grounded, focused on today (which is still pretty good), not on the what ifs of tomorrow, but would welcome any advice or resources. This is definitely a lonely disorder

          • #664

              I’m so sorry to hear your story.

              My onset was different…like being hit with a semi overnight. I have Raynaud’s as well but mine started about six months after I was diagnosed, apparently that’s rather uncommon, Raynaud’s typically come first with this disease I’ve been told. Regarding type, yours could be Sine but I think it might be too early to tell, (however, I’m no doctor) every case is so different. For me, the skin involvement was terrible for the first ~nine months. My entire body was hard and shiny, in fact I traveled for work a lot so I became a CLEAR member at the airport which allowed me to get through security with just my fingerprint…well, I learned that you can actually lose your finger prints from this disease.

              Interestingly enough, now, 18 months later, if you didn’t know me before my diagnosis you would probably never guess I have Scleroderma. The evidence is still there (wrinkles, scars, red spots) but my skin is soft now. I was diagnosed with diffuse and the lack of skin involvement and the actual reversal of it is unique…but everything about this disease is unique, that’s why I think it might be too early to tell.

              My best advice is: PLEASE know that this is not a death sentence!!! I had a doctor along the way tell me I’d have between 5-10 years…that stuck with me and to this day I want to go back and tell her what an awful thing that was to say to someone just diagnosed. Trust me, I’ll be here in 10 years and there are many, many others before me whom have proven this doctor wrong.

              Oh yeah, and, go light on the Google searches, there’s a lot of information out there that isn’t factual.

              I hope this site will help you along your journey. Thanks so much for kicking it off!!

              • #788
                Kari Dickerson

                  Thanks for the encouragement! I meet with the local rheumotologist tomorrow to review the results of his tests, though they weren’t very focused on SSc. I plan to get a referral to a specialist, though it will require traveling a bit

                  • #792
                    melanie gornick

                      Hey Kari-

                      I’ll be thinking of you today, I hope your appointment goes well. There is a chart that Scleroderma Education Project released that references blood markers and what they mean…I thought it was very helpful.

                      Scleroderma Antibodies and Clinical Relevance

                      I’ve seen specialists at Duke, Mayo and the University of MN. Not sure how far you’re willing to travel but they have all been excellent.

                      It’s a journey but I can tell you’re strong!

                • #666

                    Hi everyone, so I am new to Scleroderma, I honestly had got to the point where I thought maybe it was just me, maybe it is all in my head. I have been struggling and pushing through for so long. Now I have a diagnosis, I am trying to be kinder to myself. What I am struggling with is do I tell my kids? They are age 11 and almost 7. I know they see my struggles, but then sometimes they don’t, sometimes they are angry I don’t want to jump in a freezing pool, or I am tired, again. Part of me wants them to understand I’m not being a spoil sport, but then an equal part of me thinks they are kids and this is not something they should worry about.

                    I’m literally torn. What did you do?

                  • #679

                      Jan 2020 – Referred to Musculoskeletal clinic. “Pain in left forearm on supination for 6 months – Tender in the area – Refer for x-ray and MSK clinic I waited for 9 months from referral in Jan 2020 to get the appointment 20th October 2020.

                      March 2020 Rash on foot – Itchy, red and hot.

                      Sept 2020 Referred to Dermatology with rash on face and left foot.

                      22nd Sept 2020 -I told my Doctor that I had fingers that kept going white with cold and had to wear gloves in the summer and he said that I had Raynaud’s and he ordered a full blood test .

                      Oct 20th 2020 -Rheumatology Appointment at outpatients During my consultation at the hospital I enquired if there were any concerns with my bloods results taken 22/9/20 as the Intern was taking a long time reading the results on screen. He said only my high cholesterol but nothing else. I had explained that 9 months after the initial referral I no longer had pain in my forearms but now I had puffy fingers and had all my rings cut off my fingers recently and severe muscle pain in my neck and shoulders. (This was not mentioned in the written feedback from the Intern to my GP).He then went to another room to refer to the consultant who after some time came into the room to confirm that I had osteoarthritis which he said was due to my age. No x-ray appointment. Prescribed Ibuprofen as required and referral to OT. I was not shown the results .

                      Oct 29th 2020 GP visit to surgery “Come in today”. Recent blood results (7/10/2020 reported to GP) were a “cause of concern”. My GP said that because of recent late onset Raynaud’s, puffy fingers and rashes, he believed that I had an autoimmune disease called Scleroderma. He wrote it down for me to look up as I had not heard of it. The bloods had been done for the Rheumatology appointment. My GP was curious as to the diagnosis only of osteoarthritis. At this time he suggested that a punch biopsy would be conclusive for Scleroderma.

                      9th Nov 2020 Punch Biopsy of left foot showed hyperkeratosis, focal parakeratosis and collections of neutrophils within the stratum corneum. Mild spongiosis of the underlying epidermis, mild perivascular chronic inflammatory infiltrate composed of small lymphocytes. Fungal stain highlights many fungal hyphae and spores in the stratum corneum.

                      26th Nov 2020 GP wrote to Dermatology Outpatients asking for an earlier appointment. The waiting list was 12 to 18 months from November. He reported psoriatic type rash only partially responsive to topical steroids requiring antibiotics on account of superimposed infections. History of Raynaud’s and finger joint pains,diagnosed osteoarthritis.

                      Dec 2020 I requested a copy of my blood results from Sept 2020. Results included:
                      Positive Anti-Nuclear Ab
                      Positive Anti-Centromere B Ab
                      At this time I had joint pain and swelling of my fingers. Days when I choked on food and drink, dry eyes, painful shoulders and neck. I had a permanent rash on my face and an open wound on my left foot from a rash that over the course of almost a year was treated with 4 different antibiotics and various prescribed anti-fungal creams and anti-fungal tablets.

                      31st Dec 2020 GP wrote to consultant Rheumatologist asking for a case review as anticentromere Ab and ANA positive , pronounced Reynaud’s symptoms, dry eyes, psoriatic type rash on left ankle and perioral rash. Please review for possible connective tissue disorder ?scleroderma. Patient is extremely concerned.

                      Dec 2020 Asked for a private referral to Dermatology as unable to walk properly with open weeping wounds on left foot.

                      Jan 2021 Placed on waiting list for Rheumatology.

                      27th Jan 2021- Tel consultation only from Occupational Therapy due to Covid. I informed the nurse that I had received a diagnosis of Scleroderma from GP and that I was doing daily Yoga and a Scleroderma exercise programme for my hands and face. I had changed in diet , and was taking daily Turmeric. Discharged from OT.

                      21 Feb 2021 Private Dermotologist diagnosis –
                      1. Erythemamato-telangiectatic rosacea affecting the cheeks
                      2.Probable tinea pedis affecting left heel and foot. Cured after 14 days of Lamisil cream and rash on face cured with Protopic 0.1% ointment.
                      3. Suggested further Rheumatology review and Opthamology assessment for dry eyes.

                      3rd Mar 2021- Private consultant Rheumatologist in Belfast
                      Results of Blood test
                      1. Anti-cenromere >8
                      2. dsDNA 74
                      3. anti-RNP A 4
                      4. Reynauds Symptoms
                      5 No evidence of sclerodactyl or skin tethering in upper limbs.
                      5. Nodal osteoarthritis in hands.(unrelated to the profile)

                      Current difficulty
                      24th March 2021 Called GP surgery to report build up of the following symptoms Noticed sound of humming in head and voice sounding like a vibrator to my ears. Loss of hearing. Huge feeling of pressure in my head . not able to bend down and pain when changing position. -Now in the 8th week . Initially prescribed Sinus flush and Sudofed treatment awaiting an MRI scan.Pain now extends to neck, shoulders and left arm.

                      31 Mar 2021 Dermatology appointment from Sept 2020. Report to GP of a tear in the the bicep muscle on Right arm (Popeye deformity) I had informed the consultant that no injury reported and no pain. Just the hard lump that had appeared recently.


                    • #705
                      Lulu Mckenzie

                        Do they have a scleroderma specialist near where you live? My first indication was a rash on my neck, then the swollen fingers, your onset sounds much like my own. I’m on Cellcept now and it’s amazing the difference it’s made, I am now able to walk just fine without any aid and my skin has softened. Everyone reacts differently to medication but if your doctors haven’t tried cellcept you might mention it.

                        • #706

                            Hi Lulu
                            Unfortunately no specialist near me. in Cork. I am going to ask for a referral to a Consultant in Waterford.with really positive reviews on facebook. Still no Care plan or any treatment. Just waiting 8 weeks for an MRI scan as I have unbearable headaches that have affected my hearing. The Rheumatologist in Cork Ireland was horrible and arrogant and told me it was very hard to diagnose Scleroderma as “there are no tests”. I challenged that and he said well I won’t be doing any tests and I won’t be changing my diagnosis of osteoarthritis which I also have,(despite my blood results showing several autoimmune antibodies).

                            Trying to get a referral but I have not been able to see my GP as he is extra busy with Covid Vaccine jabs. I have found the following Facebook groups all really helpful and supportive .
                            1.keeping er lit’ IRELAND Scleroderma support group
                            2. Diffuse/Limited Systemic Sclerosis – Scleroderma
                            3. Scleroderma & Raynaud’s UK – SRUK Community Group
                            Good luck xxx Sue@ Youghal

                        • #707
                          Lulu Mckenzie

                            Is anyone here on methotrexate or have been at some point? If so is it OK to have a glass of wine? My rheumatologist said that I shouldn’t drink at all but I’m wondering if I can have an occasional glass of wine. Thoughts?

                          • #727
                            melanie gornick

                              Okay, my husband often reminds me to pare back my enthusiasm when I speak to others about life expectancy as to not unintentionally offer false hope. I have a tendency to be uber-optimistic, although diagnosed with diffuse, I am confident I will live to see a cure. Anyhow, that said, I just spoke with someone who has matched my optimism with proof. A random stranger (but no longer) reached out to me via LinkedIn and shared her story. This woman was diagnosed with diffuse scleroderma as a teenager and has lived with it for 43 years! Just a reminder, especially to those newly diagnosed: this is not a death sentence. My intention in sharing this is not to offer false hope, but to remind you to never give up the fight, some of us do and will continue to succumb, however, each day we fight we are one day closer to a cure.

                            • #777
                              Tom Miller

                                My wife was diagnosed with scleroderma almost 2 years ago. I felt helpless and confused as she was experiencing a lot of joint pain and swelling, finger discoloration, fatigue, lack of sleep along with a host of other issues that went unexplained, even after almost daily doctor and specialist visits.

                                It’s been a very emotional journey, especially with all the unknowns and feeling of helplessness for someone I care about so much.
                                I realized all I could really do is be supportive in her effort to research the disease and show compassion for what she was going through everyday. I’m so proud of her in how she’s attempted to cope with this disease, helped others along the way and given back to the Scleroderma community.

                            Viewing 9 reply threads
                            • You must be logged in to reply to this topic.