Newly diagnosed

[marbelina]

Hi there, I have been a lurker for a while and decided to come out of my cupboard. I am just coming down from the roller coaster of diagnosis of limited cutaneous systemis scleroderma. It was found following an emergency hospital admission for pericardial effusion, four months of tests showing up further heart/immunity issues eventually ruled out pulmonary hypertension. The possibility of PH left me feeling rather bleak, however now that has gone I am ready to face the scleroderma diagnosis. I've been told my condition is early diagnosis and mild which gives me hope. I saw Prof. Denton who suggested discussing either hydroxychloroquine or mycophenolate when I see my local rheumatologist in a couple of weeks time.

My bothering symptoms are raynauds, sausage fingers, occasional swallowing difficulties, digestive issues and breathing difficulties on continued exertion, hopefully this last one will improve as the fluid around my heart reduces. At present no problems that a lot of "well" middle aged folk cope with.

I no longer randomly ask Dr Google for advice as that just sets off anxiety, my sources for info are my consultants, nurses and SRUK. I would love to hear your experiences of either of the two drugs I may be offered.

Thanks in advance.

[fairy56]

Hi marbelina, I am on Mycophenolate (2000mg daily) and Hydroxychloroquine (200mg) daily, amongst other medication and although reading the inserts when I was first prescribed made me anxious because of the possible side effects, I weighed up the pros and cons and decided taking the medication was the best option. Whilst you are on these medications you will be monitored closely, with regular blood tests. I hope this helps in some small way, take care and sending you positive thoughts xx

[fairy56]

Hi marbelina, forgot to mention in my previous reply that when I had to stop taking Mycophenolate for 10 days because I had shingles, I noticed after a week the pain in my body started to come back, so I was more than ready/happy to go back onto the mycophenolate. xxx

[marbelina in reply to fairy56]

Thank you fairy56. Good to hear that there is close monitoring and that you see the benefits. Sounds like you are on quite a cocktail of meds.

[GGhere]

Hello Marbelina, pleased to meet you. I've been taking hydroxychloroquine for several years without any adverse effects. During my Googling exploits I read that hydroxychloroquine is one of the older drugs used as an immune system suppressant in the treatment of our disease, but consultants consider it to be the one with least side effects. This gave me the confidence to take is as when I read the leaflet that comes with the pills it's quite alarming. I'm in the same positions as you with fluid round the heart etc etc. Best of luck with your medication and hope you manage to keep well.

[MissusTee in reply to GGhere]

Hi, it's actually called a DMARD, disease modifying anti rheumatic drug as opposed to an immune suppressant. X

[marbelina in reply to GGhere]

Thanks Betsie, the side effects do look very frightening, good to hear that you are not seeing any. Can I ask how long you have had fluid around your heart? I had some drained a few months leaving some that couldn't be reached, meds seem to be keeping ontop of what is left. I would like think it will eventually all go as its causing a few symptoms I would rather be without.

[GGhere in reply to marbelina]

The fluid round my heart has been there for a year or more. I have a scan every few months so they’re keeping an eye it and have said it may need draining at a future date. Scleroderma is causing much discomfort in my feet as the skin is now very tight. Hey ho, we have to keep going. In September I had another bomb shell and was diagnosed with breast cancer. I don’t know which disease is the most scary. I think it’s time to tackle my bucket list as I shall be 80 later this year.

[marbelina in reply to GGhere]

Oh Betsie that is a lot to get your head around, really sorry to hear about your cancer diagnosis. Get on with planning and enjoying your bucket list. Thank you for taking the time out to get back to me.

[MissusTee]

I take hydroxychloroquine, and I find that it helps. I didn't realise that it did until I ran out for a few days and then could hardly move for joint problems. I have limited scleroderma, sjogrens, PBC and hypothyroidism. I'm currently battling infected calcinosis, raynauds, fatigue, dry mouth and eyes, joint pain etc. I have had ulcers in the past. Good luck, the journey is a bit different for us all!

[marbelina in reply to MissusTee]

Thank you MissusTee. I don't have any horrible symptoms as yet, but hoping that if I am prescribed anything it will nip things in the bud......hopeful I know.

[skylark15]

Hi, Marbelina.

I've been taking Hydroxychloroquine for about 9 years now, at 200mg twice daily, for lupus.

I've never experienced any adverse side effects.

Good luck on your journey.

[marbelina in reply to skylark15]

Thanks skylark15, that's quite a long time to be taking it without any issues, that gives me confidence.

[Cookie81]

Hi marbelina. I tried hydroxychloroquine years ago but had to stop because of excessive vomitting. Tolerated methotrexate until I got recurring shingles.

I'm tempted to try hydroxychloroquine again (if it's an option) - I have scleroderma, ILD etc etc and my recent echo showed heart involvement .

If you can tolerate hydroxychloroquine, stick with it!

[marbelina in reply to Cookie81]

Thanks Cookies 81, sounds like it's just as my mother says "for every pill there is an ill". We just have to weigh up which ills we can put up with. Take care.