Newly diagnosed!

[Tmontana]

Hi ..I have had reynauds for the last 9 years but this has nasty become bad with ulcers on fingers ,spider veins on face and weak and achy muscles .. am now undergoing tests for schleroderma .I've been subscribed nifedipine 10mg twice daily and sildenafil 25mg 3×daily ..I'm finding that these seem to make my heart race ! I'm also suffering from pain in neck and shoulders ... would be grateful to hear from anyone going through this as its quite scary !!!

[Guideleader]

Hi Timontana, I can't offer any useful advice as I'm new here too. I've had reynauds for 2 or 3 years, now also struggling with fatigue, muscle weakness, tightened tissue in face/ mouth. Saw a rheumatologist for the first time last week and he said he thinks I have systemic sclerosis. He didn't tell me much about what to expect so I went home and googled - as you say it's scary!

This forum seems helpful though, so maybe people will give us some reassurance. Just wanted to reply to let you know you're not on your own 😊

[OldTed60]

Hi there. Firstly please try not to worry because even if you do get diagnosed with systemic sclerosis there are some effective treatments which can slow or even halt the progression of this condition. Stress only makes symptoms worse as we hunch, tighten and clench more which can cause problems with pain so learning relaxation techniques is important with any chronic condition, especially if it’s autoimmune and includes Raynaud’s

With Raynaud’s drugs - many of us find these hard to tolerate. Have you started both at same time? I wonder if you could ask your GP to test check your blood pressure and heart rate and make sure the nifedipine is slow release type - and also ask about trying just one at a time so your body can adjust. I couldn’t tolerate either of these so now get Losartan 100mg and monthly Iloprost infusions. I’m also on an immune-suppressant called Mycophenolate which really helps.

Hopefully you’ll get answers soon from your rheumatologist but my recommendation would be to not to Google - just use this SRUK website to learn the basics and try to find out and learn more about your own results. Scleroderma has many different faces. A lot will depend on which antibodies you carry and how well you’re able to manage your symptoms, tolerate medications, etc.

You aren’t yet newly diagnosed - you are waiting for results of tests - and being in diagnostic limbo is very hard to cope with. In my case it’s taken 12 years to get correctly diagnosed with systemic sclerosis and others. Now I’m diagnosed and treated I’m much calmer and less anxious. You’re at the worst stage I feel where it’s all a bit of a shock. Hang in there it gets easier I promise!

[Tmontana in reply to OldTed60]

Thankyou so much for your reply ! As you say it's a frightening time when you're just starting out and will take your advice on not looking else where as there's some frightening stories on the internet.. After a long time of being fobbed off by my gp I'm thankfully with rheumatology now and they have started the tests within a week so I'm lucky in that respect .. I've had the blood work done and am having a ct scan tomorrow and cardiology next week ... what I found good with the rheumatologist was the many questions he asked about other symptoms that I hadn't taken much notice of and most things he asked I replied ' oh yes I do get that " but didn't think these other little niggles were relevant to my reynauds ... he did say he's pretty sure it's scleredoma .. I'm most concerned about my lungs as have suffered from chest infections etc for many years and was given inhalers for asthma which I'm certain I don't have from my gp so hopefully will start to get answers . Thankyou so much again for taking the time to reply !

[LadyTrundle]

I second what old Ted said in all respects! Definitely check the nifedipine is slow release, and think about taking one drug till your body has adjusted then add the other. It can take me 1-2 weeks to fully adjust (heart to stop racing, headaches to stop) each winter when I start with the nifedipine again. I also take losartan which is much easier for me to tolerate - a small dose year round, double from early autumn to late spring and the nifedipine just in proper winter. My osteopath explained that most headaches are caused from swelling or constriction of the veins in the neck. As these drugs make the veins swell, that’s why the headaches. But the body and mind does adjust!

Good luck (both of you new people). It’s a good forum here, and also if you look on the Sruk website there might be a local support group close to you. Ours in Sussex is great - really supportive and often a good giggle!

[Lupiknits]

Hello and welcome! I have Raynaud’s and systemic sclerosis, and my treatment is very similar to OldTed’s. I have Iloprost infusions every month to help the Raynaud’s. I couldn’t tolerate the other meds which made my blood pressure drop too much: with Iloprost this can be monitored while I’m on the drip. I’m also on mycophenolate.

It sounds like you’re in good hands. My heart and lungs are checked yearly to ensure that there is no damage to them.

I also recommend not looking at scary things on the internet. SRUK is a good resource which offers advice without sensationalism.

[Tmontana]

Thankyou so much ...I have been taking nifedipine MR 10mg twice daily and the senadafil 3x daily and seems ok for now ! I did take nifedipine MR a couple of years ago but stopped as I was having to pee constantly! I'm not sure if this is a common side affect ... I also put weight on with this med and that bothered me as I've always maintained the right weight for my height .. thanks again for replying .

[Chakula]

My daughter (aged over 50) has had scleroderma for about 5/7 years and has coped well with her fingers etc., She has Iloprost injections each year before Winter. Suggest that you try to become a patent of Dr Denton at the Royal Free hospital if you are not happy with the treatment you get.