Steroid withdrawal syndrome?

[Linda3009]

Hello all.

It's been a while since I posted here. Having been diagnosed with probable fibromyalgia, I thought that was the end of things.

However, I notice from the fibromyalgia pages of this site that my symptoms aren't really in keeping with theirs.

In brief, I have muscle and joint pain, but that's subsiding. I have fatigue and most recently, I have postural hypotension. (2 falls, 2 black eyes )

I'm left wondering if my symptoms are in fact due to steroid withdrawal syndrome.

To recap, I was on pred 60mg for 10 days, 50mg for 6 weeks, then 40mg for 3 days, 20mg for 3 days and finally 10mg for 3 days.

I value the knowledge and insight on this forum. So, what do you think? Could it be withdrawal syndrome? And, if it is, how long might it last?

L xxx

[PMRpro Ambassador]

That is a really bizarre reduction for someone who has been on such high dose pred for 2 months. It was fine down to 10mg but from there it should have been another month or so at least.

Who told you how to taper? And who diagnosed postural hypotension? If you lost consciousness I hope you were sent to A&E for a scan at least?

[Linda3009 in reply to PMRpro]

Hi pro.

The reduction was on the instruction of the Rheumatologist.

GP diagnosed postural hypotension. I did lose conciousness briefly, but I suspect that was from the impact.

Since then, I've had a cytoscopy (-ve) and am awaiting kidney scan.

No word from GP in a fortnight and no appointment available

[PMRpro Ambassador in reply to Linda3009]

It doesn't matter why you lost consciousness - and if it was from the impact that actually makes it even more important you have a head scan to rule out damage.

As for appointment - emergency is the word to use and then it should be same day.

[Linda3009 in reply to PMRpro]

I saw the doctor following my first fall. That's when she diagnosed the postural hypotension. In trying to root out the cause of that, she found I had microscopic haematuria, hence the microscopy and follow up scan.

I really feel that all of this is down to rapid steroid reduction.

[PMRpro Ambassador in reply to Linda3009]

So you have had more than one fall?

[Linda3009 in reply to PMRpro]

Yes. I fell again on Tuesday of this week.

I feel quite dizzy if I bend down and I think that I came up a bit too fast

[PMRpro Ambassador in reply to Linda3009]

Try sitting to do something low down and then get up slowly - I keep saying this to my husband but it doesn't seem to sink in!

[Linda3009 in reply to PMRpro]

That's really good advice!

Anything to avoid another black eye!

[guitarzan in reply to Linda3009]

I agree with PRO that's a fast and dangerous taper. Lots of side effects, especially the fatigue. Be careful driving.

[Linda3009 in reply to guitarzan]

You're right, I did at one point pray for a quick death!

It's coming up to three months since I finished on pred but I still don't feel right.

As I understand it, steroid withdrawal syndrome can last for months.

[SnazzyD]

If you’d been tapering at thy speed from the start you may have been ok but in my opinion once you were held at 50mg for 6 weeks then your option of a fast taper was removed. Your body will almost certainly notice the removal because it was not a quick up quick down like they do for some other condition flare ups.

My withdrawal included a ‘cloud’ of pain all over and around joint areas but without affecting function of the joints.

[Linda3009 in reply to SnazzyD]

That was my thinking too. My joints are not painful (as in arthritis) rather the area around them is very tender.

[Pixix]

I have had fibromyalgia for about 8 years. Hard luck...if the diagnosis is correct. The best thing to do is to check the fibromyalgia sites and look for the 18 points in the body...think it’s 18...that can hurt when pressed. My FM was diagnosed by Rheumatologists to whom I was referred by my GP. When we moved house another rheumatologist checked up, too! The exams are thorough and, in my humble opinion, should be performed to diagnose anybody! I had pain in all but 2 places, I know there is a minimum of ‘points’ that you need to have to be pretty sure it’s FM. You can find diagrams of the body with these places clearly marked & check them yourself..it may help? I do have falls with FM (until 2 weeks ago I only had FM, not PMR as well, so it’s easy for me to be clear that it was the FM causing it! I fell off a low raised bed a while ago..fine one minute, spiralling downwards the next, & I had a bad fall up the stairs last winter, breaking a finger & snapping the tendon off the joint. Hope this helps a bit!

[tangocharlie]

Postural hypotension was one of the symptoms I had that indicated adrenal insufficiency but I guess it could also indicate other things.

[Linda3009]

Thanks. I've got a renal uitrasound booked for Thursday. Maybe I'll have a better idea after that.

[Hidden in reply to Linda3009]

How did your renal ultrasound go?

[Linda3009 in reply to Hidden]

It was perfectly normal thanks. Small cyst on one kidney but apparently not doing any harm.

I'm still having dizzy spells although I haven't actually fallen again.

Will wait to see what happens next......