"Off the Steroids" Your Opinions.

[birdwatcher]

It's been about 19 months since my PMR diagnosis. After making really good progress with how I've been feeling and the reduction plan and getting down to 1mg. I ran out of tablets. I thought I would take a chance and not get more to reduce still further to half a mg. That was a month ago. I've noticed that I do get a bit of stiffness in my upper legs when bending to tie my shoe laces or getting up from a chair. Also when I awake first thing in the morning my fingers actually hurt until I get them moving. I wouldn't describe any of this as pain, just a bit of stiffness. I'm going to the doctors on an unrelated matter, so I'm going to run this all past him, but to be honest I have very little confidence in him on PMR related issues.

Do you think I should go back to the pred if the stiffness continues, and what do you think would be an appropriate resumption dose. or could it be my Adrenals catching up. Your opinions would be much appreciated.

Happy Christmas and a healthy happy new year to you all.

[PMRpro Ambassador]

It's quick - but men often do get through PMR much more quickly than most women. In fact, there are rheumies who wonder if there are a few different versions of PMR - so men can have "man PMR" .

If it were me I'd ask for a script so you have a pack of pred on hand and then see how you get on. If it gets even minimally worse I would review the situation. And if I did decide to go back onto pred I would start with a single 5mg dose and then try 1mg - you may never need more. If you do you can try more - by why take what you don't need?

[birdwatcher in reply to PMRpro]

Sorry PMRpro do you mean take 1 dose on 1 day of 5 mg then continue with 1 mg daily onwards?

[PMRpro Ambassador in reply to birdwatcher]

Yes, just a single dose of 5mg to clear out any residual inflammation and then see if continuing on 1mg as you were before is enough. You had obviously been fine at 1mg - and it isn't unusual for people to find they feel really good on 1mg but without they feel they are flaring.

[birdwatcher in reply to PMRpro]

Your a diamond. Thanks. Are you ok? Ron.

[PMRpro Ambassador in reply to birdwatcher]

Fine thanks - it's been an interesting year as OH was diagnosed with prostate cancer and had all the relevant investigations and then 2 months of radiotherapy which wasn't as bad as we half-expected. That all done and dusted until the 3 month follow-up so life is rather less complicated now! Bigger gaps between hospital appointments!!!

[birdwatcher in reply to PMRpro]

I hope everything continues along those positive lines. Good luck and best wishes to OH.

[Hindags in reply to PMRpro]

PMRpro. Just reading about all you have dealt with personally this year and thinking how nonetheless you have been so caring and attentive to all of us too. Hope your recent flare is under control. Thank you again. Happy Holidays.

[PMRpro Ambassador in reply to Hindags]

On my way back down with the pred again - just (im)patiently waiting for physio but I do seem to have headed the worst off at the pass!!!

[powerwalk in reply to PMRpro]

Do you find physio good for the PMR? I would be afraid it would make me more sore? Interested to see what you think. Thanks.

[PMRpro Ambassador in reply to powerwalk]

The physio I have is mainly therapeutic massage to mobilise the trigger points and muscle spasm caused by the myofascial pain syndrome. It isn't physio in the sense of exercises - we get up to 12 sessions without having to be referred back to a rehab doctor and we have never got as far as considering exercises! You can't exercise muscles that are in spasm - though there are a lot of physios in the UK who will try it! I'm really grateful that they appreciate the value of such treatment here - it would be very expensive to get privately.

[birdwatcher in reply to PMRpro]

Hi PMRpro, I Hope you and yours are ok, and life is being kind to you.

The stiffness I have been feeling is still with me. fingers in the morning when waking, upper thighs and slight upper arms. I don't know if it's coming back or weather it's my body adjusting to not having the pred. I just know it makes me feel old and it's been enough to concern me The whole PMR journey began with this sort of stiffness 18 months ago. I spoke to my GP when visiting on unrelated matter and he said he would give it a month then send me for some inflammation blood tests.

Strangely enough, out of the blue, I've had a call from the hospitals Rhumi department apologising for not offering me a follow up sooner from my original visit, and inviting to come along. So I am going on Wed this week. I don't have much confidence in this guy, he's so puffed up with his own importance, but it won't hurt to ask him the questions and see what he reckons.

I am seriously thinking of taking your advice and trying the one day 5 then 1 a day to see if that helps, although I can't tell you how gutted I feel at the prospect of going backwards especially after making so much progress on the reduction plan. Any thoughts welcome. Ron.

[PMRpro Ambassador in reply to birdwatcher]

You know what I'm going to say don't you? If it is getting worse it is worth the trial to see what happens. Don't look at it as going backwards, it is perhps more a case that 1mg a day was holding it - and it is a miniscule dose.

[birdwatcher in reply to PMRpro]

How did you know, that I knew what you was going to say. You know me to well.

Thanks I’ll see what the guy say’s on Wed and probably take your advice.

You knew I was going to say that didn’t you?

[PMRpro Ambassador in reply to birdwatcher]

[Hindags]

PMRpro, so glad to hear.

[Hidden]

I stopped the steroids in July and felt much the same as you for a while but for me I think it was withdrawal symptoms which gradually faded to pain free. I hope its the same for you!

[birdwatcher in reply to Hidden]

Thanks for that, Whisper. Just have to wait and see. Whilst I was on the steroid my doctor advised me to go onto Lanzoprosil, he said to protect my stomach. When I stopped the steroid the doc said I could stop the ppi as well. After about a week of being off the lanzoprosil I appear to have developed a acid reflux issue. It’s been quite uncomfortable so I’m going to go back on it to see if it gets any better. Does this sound at all familiar to anybody reading this. Thanks guy and gals. Ron.

[PMRpro Ambassador in reply to birdwatcher]

When you stop taking a PPI after being on it for more than a couple of weeks it must be done gradually - much like tapering off steroids - or you risk developing rebound acid production. Your doctor should know that and should have warned you.

Not sure what dosages are available - nor if you can cut them, ask a pharmacist about that (the pharmacist rather than the counter staff of course).

I THINK you can use ranitidine to help - there is less rebound with it when you then discontinue it. This article

medscape.com/viewarticle/74...

suggests ranitidine is far less effective - the difference isn't as much as the PPI manufacturers have claimed. No surprises there then...

PS - you may have to sign up to Medscape, it is free.

[Hidden in reply to birdwatcher]

Lanzoprasol has been supressing that acid for a long time and now it is released. You should come off it gradually, like steroids, to allow your body time to adjust

[birdwatcher]

What a waste of time it was getting the rubbish advice from the doctor I saw. Thank you to you guys for your advice. I was going to go back on it (15mg) tomorrow, do you think I should take it every other day and taper down? Thanks again.

[PMRpro Ambassador in reply to birdwatcher]

I suspect it might be better to try even slower at first - no rush! You are on the lowest available dose and I don't think you can cut it. Unless you have the capsules which you could open and add half to apple juice or something.

I think I would alternate lansoprazole and rantidine to start with and then increase the days of ranitidine and then reduce the ranitidine one day at a time - like the DSNS reduction for pred.

[birdwatcher]

PMRpro thank you for your response and advice earlier.