Reducing steriods and its returning :(

sennacharib

I am now just on 15mg a day for 2 weeks, then 10mg for 2 weeks, then 5mg for 2 weeks, then I see Rheumy again. My hands and ankles have started to hurt quite bit last couple days and they are looking red across knuckles again and generally i ''notice'' that I have all joints in fingers and hands now

I did call the rheumy nurse a few weeks ago as I was having a few things happening i was not sure of, but I get feeling as I am not properly diagnosed ( just with polyarthritis at this stage) she made me feel like I was being a hyporcondriac, and I felt silly.

So I was wondering do i just ''put up & shut up'' or do I try to contact again and see if I can get the steriods for longer even though I cant take them forever and a day and this was to just try to reduce pain and inflammation. Or do I need to see rheumy earlier, even though she said she would see me in 12 weeks ( 28th September)

I am just so new to all this, and I dont want to be a pain in neck!!
Can anyone advise please?
Thanks in advance hugs xxx

Ankyspond

Hi,

You know your body and if you don't feel right you must get in touch with the rhumy and tell them and if they treat you wrongly like they have done you must ask to speak to someone else or see the consultant again. You have a right to be seen and to get the treatment you need, don't ever
''put up & shut up'' you deserve more than that.

I think an earlier appointment with the consultant is the way to go to be honest as it sounds like the medication is not working well anyway.

Hope this helps and you feel better soon, keep posting and asking questions if you need to. xx

dreamdaisy

Steroids are lovely because they work, but that comes at a long-term cost to the rest of the body. I am not sure how long you have been on them: I know that because I have been taking them for over five years my reduction has to be very gradual, especially now I am under 5mg per day. Even if you have not been on them that long your reduction does seem indecently quick, a drop of 5mg each time is sizeable and yes, you will notice an increase in symptoms. One's body forgets, very quickly, how to make its own version of this lovely synthetic stuff and it takes a while to prod it back into production. I remember scattered posting that steroids should be taken first thing, as that is when the body does its version, so when reducing this helps to prompt its 'memory'.

It sounds as though you only have the 5mg tablets, now I am not a doc but I would suggest that you go to your GP and ask if you can have some 2.5mg ones too, that way you could stagger the reduction but still get down to the figures your rheumatologist wants by the time of the next appointment. That is what I would do. I wish you well. DD

stickywicket

I agree entirely with Anky. This is real. Don’t neglect it. It’s better to have them keep your steroid dose up, at least temporarily, than reduce it only to have to raise it again. Your GP might be able to help, especially as a first port of call, as they can prescribe steroids. Some GPs won’t want to ‘interfere’ but mine are quite happy to if they think I need it. Otherwise just brave the rheumatology nurse again. Decide in advance exactly what you want to say. Don’t be vague. Don’t be put off. Good luck and Let’s know how it pans out.

sennacharib

Thankyou all for your very helpful and kind replies. I will definately get back in touch, It usually takes the rheumy nurse around 2 to 3 days to get back, so I will call shortly and then see what happens when she returns my call. I dont want to go the next 6 weeks or so in pain as I have a severley autistic child that needs 24/7 care and it is the holidays too, so couldnt have come at a worse time! If no luck with rheumy nurse I will definately get in touch with GP again, he is away from next friday so I will make sure I speak to him before he goes.

Thanks again for all your support and I will let you know how I get on.

Big hugs to all & take care xxxx

skezier

Hi Sennacharib,

Welcome to the forum from me... sorry i am late.

I so agree with Anky and Sticky its very real,and well i hope you get a bit better from your gp. maybe the reduction is going to fast for you body?

Fingers crossed you will soon feel better and get a bit of decent help as well. nice to meet you. Cris x

sennacharib

Awww thankyou for your reply Cris. Nice to meet you too. You could well be right. Back in march I was put on steriods for 10 days to see if it would help, it took 3 days to really kick in but by time I reduced them and was down to the same amount as I am currently on now 15mg, my pain started again and it hasnt really let up since march...isnt that a long time for a flare?
It scares me that I have had no let up yet, although I know the plaquenil wont start working yet, but I guess i expected to have some pain then a break then maybe it would coe back later, not constant!
Does anyone else have this, and for this long?

Take care Cris, hope your well today xx

dreamdaisy

I have been in constant but varying levels of pain for years. The PA is not particularly active thus causing it, it's the joint damage that was the root of the pain, and now the OA is shoving in its two pennorth too. I am used to it now and would be really alarmed if it disappeared! DD