Recent diagnosis.

[Scunny1]

Good Morning,

I developed Raynauds and shoulder and neck pain towards the end of last year and have had extensive blood test which confirm I have a connective tissue disease. I am still waiting for the final blood test results but the Specialist believes I have Scleroderma and prescribed hydroxychloroquine. I read online the possible side effects but when I got the medication and read the leaflet there were a lot more that got me concerned.I have not started taking it yet as it states to have your eyes checked before taking the medication then again on a regular basis. Does the medication just ease the symptoms or does it help to slow the progression? At the moment the concern over the medication far out weighs the shoulder pain.

[Midgebite21]

I believe it works by reducing inflammation by surpassing antibodies and therefore helps to alleviate pain. Some say it can help with fatigue also. My rheumatologist suggested it for me but I declined as for me the potential side effects definitely outweighed my scleroderma symptoms at the time. Everyone is different though and you really need to discuss pros and cons with your specialist. I’m very lucky that I’m over 20 years diagnosed but my condition has been very mild and I believe it to be almost benign now, as in I haven’t had any new symptoms or progression for some time 🤞🤞Hope you get a definitive diagnosis soon and they can put you on a proper treatment plan. X

[Blue_feather]

As l understand it, and to add to what midge has said, hydroxychloroquine interferes with the way your immune system works, so yes, it should reduce inflammation and slow progression of the disease as well, since it is inflammation in part that causes the damage.

I have been on it since September and it has reduced my pain by 80% and fatigue by about the same.

Unfortunately, this, like other connective tissue diseases, is a gift that keeps on giving for some. I did not want to wait around to see what else was going to happen to me, so l took it greatfully when offered by the rheumy.

I went for my first eye exam at spec savers about 6 weeks after starting it, and was then referred to the hospital for a better look; owing to the ssc and hydroxychloroquine use, the hospital has taken over my eye care for annual checks which makes me feel a lot happier. I don't recommend a high st optician for this sort of check!

The eye problem only happens in a very small proportion of patients, and it's progressive so will likely get picked up before any damage is done.

Side effects are few and self limiting l've found, as they disappear after a few weeks.

The only drawback l have found to date is that they seemed not to work for about a month when l had flu and was recovering. Odd, but it is working again now.

Best of luck with whatever you decide to do.

[shazzy1971]

Hi,I've been taking hydroxycloraquine for over 10 yrs now and apart from some headaches and a little nausea when I 1st started taking it, have tolerated it very well. Its one of the better drugs from a side effect side of things. You just need to have your eyes checked at opticians each year. Hope this helps x