High dose of steriods then just stop - is this right?

LegacyUser

Hey folks,

apologies in advance for the long post.....

have had MANY years of being unwell (7+ years) with a whole heap of symptoms.

After being told I was depressed, low in B12, growing pains (at 28???) and so on about 5 years ago I was diagnosed with Chronic Fatigue. However, something has never sat right with me about this. I just feel that it is a fob off because generally my bloods are fine and doctors seem to rely far too much on bloods and labs rather than symptoms.

Anyway, after my third flare up of uveitis a lovely doctor in the Eye and Ear basically said enough. She said that my doctor needs to pay attention, that generally people do not get regular uveitus without some underlying inflammatory disorder. She also pointed out that a 'Full blood count' won't really give an accurate picture, that I need to be tested more thoroughly. She wrote a strongly worded letter to my GP basically telling him that he needs to test for x,y and z. Finally last month, after many years of me making the same request he gave me the blood work up suggested by the Eye doc.

Guess what? all the inflammatory arthritis tests came back positive - very much so. He has referred me to a Rheumatologist and requested an urgent appointment for me. At last some action. I have mixed feelings of relief at finally having some proof that I am not a hypochondriac malingerer, and frustration at knowing had these tests just been done before (despite regularly asking my GP) I might be already on the road to recovery now.

The follow on from all of this is that I am now being referred to a Rheumatologist. I imagine that possibly I will again have a fight on my hands, but I am prepared for that.

In the meantime my GP has prescribed me a week long course of steroids, prednisolone, 6 per day for 7 days.
Now, since February I have been on Pred Forte drops for the uveitus, starting at 2 drops every hour, then one an hour, every two hours and so on, tapering down until last week when I finally was down to one drop per day. Just one day after I stopped the drops,the uveitis flared up again.

Because of this, I am a bit concerned about taking oral steriods at that dose and then just stopping. The last doc I saw in Eye and Ear said I must have a sensitivity to steroids and I am one of those people who cannot just stop, and must very very slowly taper off them. He put me back on the drops at one every hour, tapering off over a period of 12 weeks and said maybe if it doesn't work I'll need oral steroids. He also said that given how sensitive I am to them he was reluctant to do this until no other option was available. He believed that if I were to take oral steroids I would need to be on them for about 12 weeks, and taper off them very very slowly. This was his last resort he said.

I relayed this to my GP but he just dismissed this...he said that the eye drops are such low doses it wouldn't matter. I pointed out that if in low doses I react if not tapered properly, surely with oral steroids it would be worse. He really didn't think this was an issue.

So here I am, steroids in front of me. Part of me just wants to feel better, and part of me is very much afraid of feeling better for 7 days and then having a crash afterwards and feeling a whole lot worse.

I don't want to be someone who whinged and moaned for years for something to make me feel better, and then once given the solution doesn't take the meds. But equally I don't want to make a bad situation worse and I don't want to be on steroids longer than needed.

Can those of you with Rheumatoid arthritis, or who are on steroids regularly advise?
to take or not to take???

your advice would be greatly appreciated.

byhookorbycrook

Not able to comment on your situation, but I would get a high dose of steroids over 3 days for an MS relapse and no tapering off. I'd suggest you talk to your consultant and consider changing GP.

greenbicycle

I'm in the middle of tapring off steroids right now and had done a lot of research on them and always read about them being tapered off. I have been coming down from 80mg and was coming down in 10mgs initially and now it has slowed to coming down in 5mgs but I think that is important for where I am at right now.I dont have arthritis so cannot comment on your situation.

Having said that though, like byhookorcrook when i was in hosp a lot of ms patients around me took a very high dose of steroids for a short time and then stopped with no tapering but I remember a girl saying it gave her aches and pains for a day or two After so there are obviously effects to coming off suddendly too.I don't have ms either so can't say. Havent experienced this myself.

Really, I think if you are unhappy with your gp and their advice why not change doctor? They are not always right. Then again, a doctor SHOULD know more than us on boards here when it comes to you and your illness.

LegacyUser

byhookorbycrook wrote: »

I'd suggest you talk to your consultant and consider changing GP.

greenbicycle wrote: »

Really, I think if you are unhappy with your gp and their advice why not change doctor? They are not always right. Then again, a doctor SHOULD know more than us on boards here when it comes to you and your illness.

I totally agree, and would love to change GP but in truth its not an option right now. I had a medical card last year, and this has been downgraded to a GP only card. I was 7 mths waiting for the GP only card. Without the card there is no way I could cope financially because I am literally at the doctor every 4-6 weeks, sometimes more. Usually when I get sick with something the initial treatment doesn't work and I end up back two or three times or with the D-Doc before it gets sorted. If I didin't have my GP card I would be really badly off. I know you can change GP when you have a medical card, but you can only change to a GP within x mile radius of where you live. In my area two GP's have been sued for malpractice with large awards being paid out (as in over a million euro). The other one doesn't take medical cards and the fourth is not taking on any more patients right now (and even if it were one of their doctors was arrested for a sex act on a patient!!!!)

So as you can see, I'm in a bit of a fix GP wise. So while I'm not delighted with my GP I'm kinda stuck with him. I phoned yesterday and asked for him to ring me back. That was at pm yesterday. Still haven't heard anything. Thought he might ring before surgery started, but given that he's never in on time for his first appointment I doubt it.

I don't have a consultant yet as I am waiting on my appointment. And from previous experience with family members, getting a consultant to listen to you can also be hit and miss, and often the help of your GP is what makes the difference - so I'm probably screwed there too!

My uveitus has not cleared up at all since returning to higher dose steriods last week, so I am going back to the Eye & Ear this afternoon. I will have a chat with the doctors there about the steroids and see what they advise.

I too have read that stopping steroids without tapering can cause aches and pains - it even says it in the leaflet. Not ideal for someone who has symptoms of aches and pains to begin with :rollseyes:

Thank you for all your replies.
If anyone has been prescribed steroids in this way (high dose and then stop) for arthritis I would appreciate your feed back. Did it help? is this something that is usually done?

I think I might also ring the arthritis association for their advice on where to next.
thanks again

flossie

As a fellow uveitis sufferer (although it's been quiet for a couple of years now, fingers crossed) i know your pain! No reason for my uveitis (and occasional iritis) was ever found despite trips to rheumatologists, scans etc.

Have you been tested for HLA-B27? It's something that should be suggested. Also, my flare ups (which started at a young age) resulted in the formation of cataracts due to increased steroid usage - not meaning to scaremonger there, as your specialist will be checking you out for this - and as they were operated on the 'jelly' in the eye was removed to clear out debris as a result of the inflammation. I won't go too much into events over the years as i will be here all day, and i'm working, but perhaps suggesting a long acting steroid into the eye? I had a couple of injections into the eye (not pleasant, but hey ho), and there is also somethign called retisert, which is a slow release medicated capsule stitched into the back of the eye.

I am 29, so know how frustrating it can be.....

IM0

byhookorbycrook wrote: »

Not able to comment on your situation, but I would get a high dose of steroids over 3 days for an MS relapse and no tapering off. I'd suggest you talk to your consultant and consider changing GP.

same here. I usually get 5 days IV though and after that orals for tapering for a week or so. works better [Ive tried both ways]

LegacyUser

thanks for the replies.

I ended up taking the steroids because my GP never phoned me back, and given my uveitis wasn't getting any better I thought it might even help that. To be honest, I think I might as well have been taking smarties - no benefit at all. The only thing they did was give me insomnia. I had a slight energy burst for a day or two, but more so in the sense that I wanted to be doing things, but the aches and pains were still there so the mind was willing but the body was still unable. More than half way through the course now, and actually feel worse because I haven't slept in 4 nights. And I feel quite low and weepy, which is probably a mixture of the steroids and the lack of sleep.

Despite taking the steroids, my uveitis is still here...had to go back again last Wednesday. The doc who saw me was very unhelpful and even had the cheek to give out to me for coming via A&E. This is despite the fact that his colleague told me the previous Thursday to come back if there was no improvement over the weekend! I gave as good as I got, and probably just to get rid of me, he finally referred me back to the OPD to see the consultant. About time, I've been in the A&E practically on a weekly basis since Feb as the uveitis flares up every time I lower the dose of steroids.

The pain in actually bearable, but it is worse than it was a few weeks ago. Neurofen seems to help, but its strange cos any other time I've had it, the pain is only there when its very red and inflamed, but once the drops start to take effect the pain slowly eases off. Not this time though. But anyway, have appointment to the OPD clinic on Wednesday so we'll see if any more comes from that.

I have been tested for the HLA-B27 marker and it is positive, as are all the indicators for inflammatory arthritis.
Its looking likely that it is either RA or possibly Psoriatic as I do have mild psoriasis and get plaques on my scalp, and dry patches on my face. I don't usually get thick scaly plaques, and have never had to had heavy duty treatment for it - usually exfoliating and plenty of moisturiser keeps it at bay - but it does flare up when I am stressed and at the moment I do actually have a small thick plaque on the instep of my foot.

I suppose I'll just have to wait for my appointment for the Rheumatologist and also see what the Eye consultant says.

In the meantime I have heard of a good lady doctor in the next town from me, so I am going to see if her surgery falls within the catchment area for my home so that there might be a possibility of changing GP.

Thanks for all the replies and advice