Stopping steroids

[mad4cavs]

I want to stop taking my steroids I'm worried about side effects,I would rather deal with the pain,I'm on 5mgs daily would it be ok to just stop or should I just take them every other day to start with.

[LucyJean]

Hi there, I understand your concerns about taking steroids but I would first and foremost discuss this with your Rheumatologist. If you have been on the steroids for longer than a few months then you cannot just stop them you have to have a more gradual reduction programme, such as reducing by 1mg every month. When you take steroids for a prolonged period the body becomes reliant on the standard dose of steroid it is receiving and will adjust the production of cortisol in your body that is produced by your adrenal glands. If you just stop your steroids there may be a period of adjustment when you are not getting enough cortisol and this can cause all sorts of problems because we rely on it for our bodys to work properly.

The steroid is not there to control your pain it is there to control the inflammation that it associated with Scleroderma and without other medications, or a treatment plan then it is likely you may experience a flare of your disease if you just stop them. You should only do this in consultation with your consultant or GP, and do it slowly.

If on the other hand you have only been on the steroids for a few weeks then stopping them is not such as issue.

I hope this makes sense

All my best

Lucy x

[mad4cavs in reply to LucyJean]

Thank you for such a great reply I have booked an appointment with my gp for this afternoon.

[Magsterly in reply to mad4cavs]

You may want to look into accupuncture. Research it for your condition. Try NCBI website. Look at double blind studies. Go to someone with excellent reviews and licensed as an LAc. And specializes in Chinese herbs. It costs some money but you may be pleasantly surprised.

[MDulle]

Hello, I fully understand your desire to stop taking the steroids you were prescribed, but I agree with LucyJean. Follow the advice of your doctor.

When I was st the same stage as you, my doctor suggested reducing the steroids very gradually to avoid further difficulties. When I was down to 1 mg per day, I began taking them every other day for a week, every second day for a week, every third day for a week and so on, until I was completely weaned off them. It took longer than I’d hoped, but it worked well.

Good luck!

Mx

[mad4cavs]

Thank you my visit to the gp went well she has told me to contact my consultant before I do anything with my meds

[trunchalobesity]

I have been on steroids for 15 years. Please note you cannot and must not just stop taking them. Please note that you should have been issued with a steroid warning card for this reason.

Steroids are not prescribed for pain but for inflammation. They are commonly prescribed for lung involvement and are often prescribed even in the short term when people have infections.

Please speak to your Rheumatologist before making any decisions regarding this.

[mad4cavs in reply to trunchalobesity]

I have not been issued with a steroid warning card,I haven't been told why I'm on them,I have diffuse scleroderma on 2G of mycophenolate daily plus 5mgs prednisalone.the communication between my rheumatologist is limited I have asked for a written account of my appointments so I can research and understand a little better

[LucyJean]

Hello there, Just to reassure you, you are not on a high dose of steroids, so it is not such a concern about your steroid use compared to someone who is on 7.5mg and higher, because the likelihood is that your own adrenal glands will still be producing some cortisol (although this cannot be assumed, and that is why you should never just stop the steroids).

It is however helpful to have a steroid alert card, which you can just get from any pharmacy. I carry one in my purse and have one in a visible place in my car. You can also have wrist bands to wear. You would only need them if you had had a serious accident, or severe diarrhoea and vomiting, as this would mean that you would need additional steroid.

I suspect that your Rheumatologist is giving you this combination of immunosuppressant (Mycophenolate) plus the steroid to reduce inflammation. It is pretty common to be taking that type of prescription when you have scleroderma.

I hope that helps

Lucy xxx

[mad4cavs in reply to LucyJean]

Thank you now i have a card I have been reduced to 5mgs, recently was on 7.5.mgs .before that 10 mgs was on large doses of dexamethasone during chemo for breast cancer.I would just like to come off it all together.I'm fed up of not feeling like me

[pixiewixie]

hello mad4cavs, just to let you know that I am thinking of you & I understand. X Pixiewixie

[mad4cavs in reply to pixiewixie]

I'm still on 5mgs still not me, this disease is here hovering 24/7 someday better than others,itching gets me down at times ,I've now developed rochea I'm under dermatology for this,thinking of you xxx and everyone here I often come and read posts and it helps xxx

[pixiewixie]

Hello mad4cavs .... Today is my first official day off steroids!! I have eventually tapered down ... am I pleased? Well these last few days legs have gone bananas!! Very swollen ... painful & burning... large vasculitic like circles etc ... Lupus legs also Completely returned... deep adipose tissue has all lumped together ... this has been diagnosed, but cannot for the life remember the name !! I would have stayed on steroids ... but ... they have totally affected my eye pressure ... alias glaucoma!! What is a girl to do?? Thinking of you ...