Final Rheumy appointment

[Spazzy55]

So I have been discharged after almost 2.5years whilst still on 0.25 mg Preds.

My Rheumy smiled when I told her of my tapering and insisted this amount is probably not making any difference and that I should stop just now, currently tapered from 0.5 to 0.25 6 weeks ago and been on 0.25 for 2 weeks.

I knew she’d poo poo this before I saw her. lol!

I’m going to stay on 1/4 for one more month and then taper off!

Does this seem reasonable?

She said that I’d taken much longer on my pred journey than most, but that I’d done well and that this will aid my remission hopefully permanently!

She insists I don’t need a Synacthen test now, because if I haven’t displayed any illnesses or discomfort usually associated with and suggesting Adrenal problems, in tapering from 5mg down, then it’s more than likely that they have awoken up fully.

This leaves me feeling quite perturbed if I am totally honest, maybe unrationally so!

Though my GP did say she would do one previously!

Anyone got thoughts on this please?

Dexa scan is going to happen soon, that’s reassuring!

Suggested I have counselling for my rage’s, I’m not so sure, I prefer to work things out by myself!

Just need to get fitter and stronger now, as I can’t even do 1 press-up, shocking from a previously fit bloke!

Though my walking is up to usual speed!

[SnazzyD]

Exciting!

If you feel ok on a daily basis instead of being fatigued and beaten then likely your test will show normal anyway. It depends how busy your life is though as a quiet life can make one think the adrenal glands are fine. However, throw in a busy day out and it can knock the stuffing out of you and you feel like a limp rag. If you can do that as well, you are likely in pretty good shape. The next test is something very stressful like an accident. This is best not tested voluntarily! For this reason you should carry Pred with you and have medical information for a year after stopping so that should you be unable to answer for yourself medics can be aware. In these circumstances you might need a drop of hydrocortisone for good measure.

[PMRpro Ambassador]

"She said that I’d taken much longer on my pred journey than most"

She thinks does she??? We'd disagree and many of us would be ecstatic to be off pred after on 2 and a half years. Just as we wouldn't be quite so dogmatic about adrenal function. But then, we have heard stories from thousands of patients which I somehow doubt she has in her career.

Don't dismiss the idea of counselling - it doesn't do it for you, it gives you tools for you to make use of in working it out for yourself and they are better able to identify things we may be denying. Your GP should be able to provide contacts - including online options you might find more acceptable.

Now for the rest of your life ...

[Nextoneplease]

Glad to hear you’re (nearly) there Spazzy 😊

I agree, taper gradually and get a Synacthen test if you can. Even once off pred completely, keep an eye out for any aches and pains, and for any evidence of poor adrenal function. Carry your steroid card if you have one, in case of unexpected events/emergency.

Those cautions aside, it’s brilliant that you’re so much better 🙌

All the best to you, take care x

[Angelsmummy]

Well done you ,still be careful though eh?Best Wishes to you!xxx🎄🎁🤶🦃😜

[Broseley]

Hi, I had a similar experience, discharged after 2.5 years on 1/2 mg pred. in Feb this year. I was fine, but didn't stop my pred as I was starting to get some aches and pains which rheumy said was to be expected as the pred masked arthritis. By July I was really suffering and had to cancel my holiday. I took an extra 5mg pred which knocked all pain on the head within 24 hours. My GP sent me for XRays which showed no arthritis in my hips and very mild arthritis in one knee.

So be careful please, and save some pred just in case! I'm now down to 1mg and taking things very slowly. It's nice to be able to go at your own pace without the rheumy breathing down your neck pressuring you to stop pred!

[keeptalking]

Counselling counselling counselling would be my recommendation. It’s too easy to blame medication (although I’m not denying. that high doses of Pred. do have effects on your anger and mood)

But you are saying your 49 year old marriage is at an end. !! This will, I’m sure, be influencing your mood and needs good consideration and talking through. Ideally with your wife but if that’s not possible on your own.

You speak of wanting to get back to an earlier fitness and health. But in order to move on to that you’ll need to look at all aspects of your life as that will go with you.

Not easy but worth it.

[Pixix]

If you feel OK, why do you need a synacthen test? That’s my thoughts, for what it’s worth! I only had one after having bad symptoms of adrenal insufficiency…you’d not ignore them…I was pretty sick. Many people go through PMR without ever seeing a rheumy, I’m one of them (though I saw rheumies about other conditions so PMR cam into the conversation). I’ve had PMR for over 5 years. I’ve never had counselling, but don’t understand why people turn it down if a professional offers it to you.

[PMRpro Ambassador in reply to Pixix]

One lady felt fine - but her synacthen test showed NO reserve function at all. If you are in that situation, the care of an endocrinologist is very useful and you may get the rescue pack. If you pass out before taking an oral dose of pred and there isn't an ambo to send to you, that may be a life-saver. If you get signs, fair enough, but you might not.

[Pixix in reply to PMRpro]

WOW! I thought it always came with symptoms!! Very interesting, thanks. Seeing my Dr for a half hour appointment early January. Had 3 depo medrone injections in my butt last Friday, & it’s helping the arthritis quite well, & the bursitis is a bit easier, too! S x

[PMRpro Ambassador in reply to Pixix]

If only!! One lady very involved with the forums years ago used to just be very confused and half asleep before collapsing - if her husband heard her bargling he'd force 10mg pred down her before it was too late and an ambo was required.

[Pixix in reply to PMRpro]

But hopefully she was one out of many, or all the people reading this will get well alarmed!

[PMRpro Ambassador in reply to Pixix]

Fair enough - BUT if YOU are the one person, it is a 100% experience. And there have been several with adrenal insufficiency over the years - including SnazzyD

[Pixix in reply to PMRpro]

Should there not be a general warning at top of site so everybody can know then? I understand the ‘one person’ bit…I was the ‘one person’ in a medical scenario once…&bi was paralysed for 6 weeks! I guess there’s a FAQ on the subject, too.

[PMRpro Ambassador in reply to Pixix]

There is and it is mentioned whenever relevant. You can't have a general warning like that on this site - they aren't clever enough for more than one thing at a time.

[Pixix in reply to PMRpro]

That’s a shame! Yes, I read about it in posts quite quickly & was very aware of it once I was below 5mg! When I got sick I spoke to my Dr to see whether he thought it was that, or something linked to my 11 other diseases! Sometimes it’s hard to see the wood for the trees! He was sure about it & immediately ordered a blood test for me. S x

[SnazzyD in reply to Pixix]

I think people should always be cautious and keep the possibility on the back burner. The crises I had happened when I was no longer getting all day every day insufficiency symptoms. 4 of them were after I had stopped Pred after a good Synacthen test. They came out of the blue with no warning after I had been dealing with a sustained extreme (for me) stressor that seemed to finally deplete any capability I had. I think people should be alarmed enough to know they should always be prepared with rescue doses, not be blasé and carry/wear medical alert info on them. Panic, no.

[Pixix in reply to SnazzyD]

You were the one who really triggered my knowledge, thanks…but sorry for you! It’s interesting to see that, in your case, you were dealing with stress at the time…I guess it could happen to people not on steroids who never had PMR or GCA! I’m always wary of those symptoms & sickness I had for 2 weeks returning, but my consultant advised me to ignore any sickness next time, plough through it, & definitely don’t increase my steroid intake! Ah, well! No, I didn’t return for my next appointment…I gave it up to another patient!! S x

[PMRpro Ambassador in reply to Pixix]

That was a bit mean ...

[Pixix in reply to PMRpro]

What…me not turning up? I wouldn’t do that to the NHS! He gave me a form for a synacthen test in 8weeks time (he kindly gave me 8 weeks to get from 4mg to zero)…& that would trigger my next appointment! Somehow, I didn’t manage to get the blood test done….! S x

[PMRpro Ambassador in reply to Pixix]

Oh dear, what a shame, never mind ...

No. I meant mean on the other patient ...

[Pixix in reply to PMRpro]

Oh, sorry! Misread that!! Yes, mean on the next person for sure! S x

[Mfaepink1973 in reply to PMRpro]

Bargling ! I’d never come across that word before (even though I work caring for people with dementia) I immediately looked it up will be using it a lot more now 😀

[guineapigharriet]

I was diagnosed with PMR in May 2017, when I was initially placed on 40mg Prednisolone. I have endeavoured during the 2020's to decrease Prednisolone by 0.5mg every 2 months. Recently, from having remained on 5mg for some time & stable, the Rheumatologist I am under has said I must come off. I once more decreased very gradually until reaching the 0.5mg point, but symptoms returned with a vengeance, particularly in the shoulders & arms, when for example I could barely reach for a jacket from a hook, and everything became a struggle. My inflammatory levels were very high. When seeing the Rheumatologist 3 months ago, I was placed on 20mg for 2 weeks followed by a fortnightly reduction of 5mg until reaching the 5mg, then instructed to drop to 1mg remaining there indefinitely. I followed this instruction with some trepidation, and low and behold the symptoms crept back at the 1mg point. I subsequently rang my gp surgery to discuss upping, and it was agreed I could return to the 10mg point for 2 weeks, then drop to 5mg & remain there. Whilst writing, I am at week two on 10mg. However, when pushing a heavy shopping trolley at the weekend, I have exacerbated the shoulder & arm pain to an extent. For me, it seems to be a never ending cycle. 7 years now. I next see the Rheumatologist late February, when he is to discuss placing me on DMARDS. In the meantime, and all being well with bloods, I am scheduled to have my second knee replacement early February time. Each time I do endeavour to reduce, I feel a level of optimism!

[PMRpro Ambassador in reply to guineapigharriet]

DOMS - the pain you have developed after pushing the shopping rolley isn't the same as PMR pain. It is something we talk about a lot - it is from asking PMR and pred affected muscles to do too much. I struggle to carry a heavy bag without it being painful afterwards and I can't use the big trolleys at our Spar supermarket as wrestling them makes my arms ache (I can't reach to the bottom either but that's another matter!). I can manage the smaller ones at a different supermarket. You do have to avoid it and paracetamol MAY help it.

But DMARDs are very hit or miss - there is a small proportion who do well with methotrexate/MTX but not many. A new study from the USA has now shown it doesn't get patients off pred - so the ones who do well may be misdiagnoses in the first place. The same applies to leflunomide - and it has very unpleasant adverse effects. And there are a few on the forum who have done very well with hydroxychloroquine. You have to try them to see if you are lucky.

But if the symptoms return at 1mg, why do you not stay at 2 or 3mg longerterm? That probably has fewer adverse effects than any of the DMARDs being added and Prof Dasgupta has told us he often keeps patients at 2-3mg to reduce the risk of relapses.

[guineapigharriet in reply to PMRpro]

Thank you, that makes sense, and I shall be cautious when next seeing the Rheumatologist.