Advice welcome - feel I am blundering about it the dark here...

[Bon1]

Hi everyone

I’ve had a great run but am very confused at the moment and would welcome your thoughts. Bloods are coming back fine and I’m currently on 7mg Pred, mtx and hydroxy. However I must be really dim because I’ve had neck pain for a good six weeks and literally only just remembered that three years ago I had constant neck pain which eventually went nuclear and left me unable to move - hence me being where I am today. I also have a yucky looking finger joint which is red and hot. I could happily (ish) live with this but i am fearful about haveong another attack of auto immune hearing loss: I have no idea whether what I am experiencing constitutes a “flare “ because compared to how I have been this is nothing! I don’t know whether I am now officially uncontrolled because i suspect my DAS would be pretty good. The rheum nurses have not returned my calls and I’m not due to see the consultant till Mid may.

So I was wondering about pushing up my steroids for a week to see if that helps - does anyone do that? And would I need to taper slowly down again?

As always your wisdom would be greatly appreciated

Bon

X

[nomoreheels]

I feel for you, you've a lot going on. To be honest though unless I'm specifically told I can I don't mess about with my med doses, including my pred. Also, if you do increase your dose that will throw you out when you request your repeat script, you'd need to request it early, would this be a problem? Ours are done electronically & if meds are requested too early they're rejected. With some meds this wouldn't be too much of a issue but with steroids not taking your dose for a few days could cause real problems.

Could you get in to see your GP tomorrow seeing as the Rheumy nurse hasn't returned your calls? If he increases your steroids that's one thing, he may even give you a general steroid injection if he feels it's appropriate, or whoever is the designated steroid injection giver. Ensure you tell him you're concerned about it being the start of a flare, you've a suspect finger, you've had neck pain for a while & that you've a history of autoimmune hearing loss.

Take care of yourself, I hope you're able to sort it out one way or another.

[Bon1 in reply to nomoreheels]

Thanks NMH. What you say makes good sense of course - and I don’t really want to be tinkering about without medical advice. Wish the damn rheum department would stop ignoring me!

[nomoreheels in reply to Bon1]

It's not on it really isn't. What do they provide a helpline for if they're not going to help reasonably promptly? Nobody uses it if they've no need. Anyway, maybe try once more in the morning & if you still have no joy make an appointment to see your GP, or if there are none available ask for a telephone consultation, they usually do them either inbetween appointments or at the end of surgery, it may just be you need the ok to increase your steroids for a week or so.

[sylvi in reply to nomoreheels]

I agree with nomoreheels go to your dr or even go to your rheumy and demand someone sees you pronto,also complain to PALS at your hospital about the rheumy not returning your calls. If you can't see anyone you could see out of hours dr or go to a&e to get some help there.xxxx

[vonniesims in reply to Bon1]

Don't think they are ignoring you, if it is like our department they are absolutely run off their feet. Two consultants and two specialist nurses down. You have to wait 7 to 10 days just to speak to the nurse on the phone !! If you can pay you can see the consultant the next week !!

Think you should talk to GP. Not good to tinker with steroid doses. Good Luck and hope you feel better soon

[Bon1 in reply to vonniesims]

You are right of course! They did actually call yesterday and the nurse was going to speak to the doc and call me back early next week. It’s the return to uncertainty that makes me so needy! Thanks so much for your reply. Hope you have a good weekend

X

[Bon1]

Thanks again Heels! This forum is such a lifeline- really appreciate your thoughtful responses.

X

[nomoreheels in reply to Bon1]

You're welcome Bon, it's when it works best.

[Nettac]

I had problems with advice line so went to see Gp. She then contacted rheumatology. Maybe that's the thing to do, given the weekend is coming up.

[Nuttyshirlz]

Hiya

I’ve always found there only seem to reply on a Friday even if u ring on a Monday. I wouldn’t not up my pills unless nurse or doctor said so better be safe than sorry xx

[Hidden]

Hi Bon1 - I just wanted to answer your second question. No matter how you get onto the Prednisone, you always need to taper down. You can get a lot of reactions if you don't. The Mayo Clinic says:

"If you abruptly stop taking prednisone or taper off too quickly, you might experience prednisone withdrawal symptoms:

•Severe fatigue

•Weakness

•Body aches

•Joint pain

•Nausea

•Loss of appetite

•Lightheadedness"

One time, long ago, I was taking continuous rounds of prednisone at 60, 60, 60, 50 50 50, etc. and I forgot it on the third day of 60s. I was coming back from a conference and almost fell asleep and wrecked the car. So just be careful how you taper, and just be sure you DO taper..