Should I be on medication

[Helenlouise40]

Hi all,

I am finding this site so useful, thank you all so much. I was diagnosed with limited scleroderma 3 years ago. Symptoms so far, Raynaud's , Calcinosis in knee and fingers, rash on face and some swallowing difficulties. I have high blood pressure which I am on medication for. Luckily all my heart/ lung tests are clear. I have seen my rheumatologist recently and he didn’t mention any medication. I notice that some off you are taking some form of medication. I will obviously ask my rheumatologist at my next appointment but in the meantime does it sound like I should be taking something? I’m terrified of the PAH but I know all I can do for that is have regularly tests . Thank you all for any advice xx

[LadyTrundle]

How bad is your Raynaud’s? I was told by the Royal Free that it’s okish if my fingers go blue, but I mustn’t let them go white. Ever. That’s the biggest difference from ‘ ‘ordinary’ Raynauds. So if that regularly happens to you despite all your efforts, I would definitely ask about nifedipine and/or losartan potassium. And If you already have difficulty swallowing then a PPI eg omeprazole is, I believe, considered to give some protection. If you don’t feel your Rheumatologist is that knowledgable about scleroderma and might not be treating you properly, you’re entitled to ask for a referral to one of the specialist centre (if you’re in UK).

Phone the SRUK helpline for where the nearest specialist hospital unit is.

Good luck!

[Vetataiza]

Your rheumatologist knows you well because he has all your medical history on your sickness, so if he doesn't prescribe any medication believe him/her, its for the best.I thank you.

[Midgebite21]

Hi, I’ve been diagnosed with limited (CREST) form of scleroderma for over 19 years. The only medication I’m on currently is Nifedipine for Raynauds and amitriptyline for pain and sleep issues associated with secondary fibromyalgia diagnosis. As there is no real treatment for scleroderma itself most treatments are based around symptoms. Therefore if your respiratory and cardio function tests are normal then no interventions will be required. I have seen a gastroenterologist for swallowing and he basically told me to chew food more before swallowing, always have a glass of water with meals to aid transit and offered me omeprazole for GERD symptoms. Unfortunately many of the drugs used in scleroderma (and other rheumatological diseases) have quite horrible side effects themselves so if you don’t need them then that’s probably a great bonus. Definitely consult with your rheumatologist about possible medication but don’t worry if your not prescribed anything. Many of us have very mild, slow progressing disease that it means intervention is unnecessary.

[Fishie1 in reply to Midgebite21]

This sounds very similar to me. I would avoid any medication if possible as these are long term prescriptions.

[amc282]

I was diagnosed with LSSc, polyarthropathy and Raynauds (white fingers) in 2019. I have had gastric issues since 2013, my first real symptom along with plantar fasciatus. I was prescribed celicoxib (anti-inflammatory) to start and it did nothing for the finger pain and swelling I was experiencing. So, my Rheumy and I decided I might need to try Hydroxychloriquine. It has one particularly scary side effect that I try not to think about and I monitor my eyes regularly. It has helped tremendously with pain. I get the odd flare up now and again but I try to limit my stress and have an I don’t care attitude about the little stuff. Stress can aggravate SSc. Be well. X

[cowhide]

Hello, I was diagnosed in 2015 and at that time I was just taking PPIs for acid reflux which weren’t really working. Medication is all about treating symptoms and trying to slow disease progression.

Between being referred to rheumy by my GP with suspected scleroderma, I developed an ulcer on my finger, having had Raynauds for decades. At that point my GP put me on nifedipine which can help. When I got to see my rheumy she prescribed sidenafil instead, which has helped a lot (in most areas, GPs cannot prescribe this for ulcers/Raynauds, only consultants). So if your Raynauds is bad you may be able to get help with that (I also take losartan to help the circulation). As you are on tablets for your blood pressure this should help with your Raynauds and you may not be able to have anything else. There is no medication for calcinosis but I do think my Raynauds meds help reduce its incidence. Do read the fact sheets from SRUK and try and avoid it getting infected.

My fingers are very puffy and tight but I do not yet have sclerodactyly so I was started on mycophenolate to try and slow skin fibrosis. Gradually increased to the maximum dose.

About 2 years after diagnosis I felt my bones were aching and I was exhausted so I asked for a vitamin D test and was found to be severely deficient so now take supplements. Vitamin D deficiency is very common in scleroderma. I was also found to be very low in ferritin so take iron tablets.

My biggest issues were my reflux and swallowing problems. Many of us are partially investigated but not given a complete picture and if you feel your gastro problems are not being addressed properly then fight to get on the list of a gastro consultant to really get to the bottom of things and formulate a management plan. That is where I am at now, after 30+ years of reflux, 12+ years of swallowing problems and 6 years since diagnosis and the endoscopy and barium swallow that I had then.

At long last I have a good gastro consultant and after more tests and medication changes I am seeing him next month to go through everything. Reflux can be a contributing factor to developing pulmonary fibrosis and is usually linked to swallowing problems so do make sure you get your dysphagia investigated (bedsides which it’s bloody horrible anyway, especially if like me you regurgitate food sometimes).

So although many of us have some of the same issues, we are all slightly different. Make sure you mention all of your symptoms and if they are affecting your quality of life. Medication is not automatic and for some people their meds bring a lot of side effects or complications.

Mycophenolate increases the risk of infections and I have probably had more antibiotics due to skin/digital infections in the last 4 years than in the previous 50.

Hope you manage a helpful chat with your rheumy.