Flare again ....

[lesley2015]

Hi All,

I have followed this forum since June 2015, and it has been such a source of information and comfort!

You would think I have all the answers I need .... but another flare (I think).

Down to 4.5-5mgs, but for the last 6 weeks feeling gradually worse and worse ....thought it was a virus (fibro I also have apparently?), my osteo is worse, but now feeling so fatigued, aching all over, a headache, neck, shoulders, hips ..... my tinnitus and costochondritis is back on full form....

Obviously I can't get a GP appointment for two weeks - having bloods done then also, they were ok 2 months ago. But I don't want to leave it too long this time, I don't want to risk another huge flare like I had earlier this year.

I took another 2.5 mgs this afternoon, not sure if I am feeling better or resting is helping .... and intend to go up to 7.5 ...... not sure if that is enough.

Wondered what opinions there are, I am sure PMRpro will put me on the right track.

As an extra ....... awful stress sons marriage broken down, and he is moving in with us .... very difficult split, he is broken, I have been primary support for him - which is where I think this began.

Thank you so much

[PMRpro Ambassador]

Sounds awfully like a flare - any you have all the risk factors don't you?

[lesley2015 in reply to PMRpro]

it seems so

[Hidden in reply to lesley2015]

I agree it sounds like a flare... You needs the pred helper with all that going on. 🌻

[lesley2015 in reply to Hidden]

Yes its just deciding how much will be enough, and whether it can be short term or as I am under stress to sit on a higher dose for a while .... you would think after more than 4 years I would know ..... lol, pred head

[PMRpro Ambassador in reply to lesley2015]

Start by adding a small amount - I wouldn't normally say that mind you!

What dose were you on 6 weeks ago when this started\/

[lesley2015 in reply to PMRpro]

5or 6mg - my rheumy wanted be to drop a 1mg a month .... I have been a bit slower than that though

[PMRpro Ambassador in reply to lesley2015]

One approach is to add 5mg to where you flared for up to a week and then drop straight back to the dose above where you flared. No point going back to where you flared really.

[lesley2015 in reply to PMRpro]

ok thanks, will try another day at 2.5 extra (it was split today), then do 5mg if no improvement, hopefully that will settle it ...

Thanks as always

[Hidden in reply to lesley2015]

3 and a half years with pmr and I took ages to decide to raise for flare. I upped by 5mg for 3 days to a week. Then I went down towards original dose of 6mg and added 2mg to make 8mg for 2 to 3 weeks and seem to be OK at 7mg now. Clear as mud... 🤣🤣🤣🌻

[lesley2015 in reply to Hidden]

thats a lot to take in with a pred head ..... lol

[SheffieldJane]

This is one of the tough patches as you will be experiencing Adrenal deficiency too. I would increase and when you taper down, do it really slowly.

[tangocharlie in reply to SheffieldJane]

I was about the say that re adrenals too. Having been through adrenal problems once and now probably again I'm still not sure initially how you're supposed to know whether the problems are due to a flare, adrenal problems or steroid withdrawal effects. After about 10 days if you feel really really unwell it's possibly adrenals but there's no straightforward answer after a couple of days is there.

[SheffieldJane in reply to tangocharlie]

No there isn’t. I have never been more confused. It used to be quite straightforward to read symptoms. Now at 4 mgs, I just feel ill and exhausted with intermittent pain. Is it Adrenal Insufficiency, blood sugar levels, hypertension or some other form of large cell Vasculitis?

“How can I go forward when I don’t know which way I’m facing?” John Lennon.

[tangocharlie in reply to SheffieldJane]

If you feel really unwell, like super extreme overwhelming fatigue that's gone on for over a week and seems to be getting worse, that's a major sign of adrenals and needs immediate action. I think I've got it again right now so have upped Pred to 10 and am taking advice from docs on what to do next. I'm starting to feel a bit better and think I'm out of danger but will see what the next few days bring.

[SheffieldJane in reply to tangocharlie]

Are you under an Endocrinologist? My last Synacthen Test showed a normal Adrenal function several months back ( the first was insufficient a few weeks prior). My GPs and even my Rheumatologist concentrate on other health factors. I am due another Synacthen Test when I drop one more mg of Pred. The description of ridiculous, fatigue certainly fits and much longer than a week. My nights are very broken and have been for 2 years maybe. I learn a lot from these little side conversations.

[tangocharlie in reply to SheffieldJane]

i was under endo a few years ago when it first happened, but they signed me off after giviing me hydrocortisone for a few months. My GP has offered to refer me back, but right now I'm having to take 10 Pred to get over the current crisis, so won't be able to have a synacthen test until it's back donw below 5.I don't think my adrenals ever got back to normal the first time round as I was really tired for 2 years before going on steroid injections earlier this year.

[tangocharlie in reply to SheffieldJane]

This is interesting, looks like it can take 6-12 months or more for your adrenals to start working properly again after steroids and they may never fully recover. The first one is easier to read:

nadf.us/adrenal-diseases/se...

ncbi.nlm.nih.gov/pmc/articl...

[SheffieldJane in reply to tangocharlie]

Thanks for the interesting link. I did know about the prolonged recovery period following chronic steroid therapy, the 6 months to a year has been quoted on here a few times. It seems like there is nothing that can be done about the deathly fatigue though. This is definitely the worst phase of it that I have experienced. All the Synacthen Test will show is that my Adrenals have the potential to work properly. I worry that I had radio Iodine treatment on my thyroid gland following Thyrotoxicosis during Graves’ disease. It seems common sense that this would have an impact too. Sometimes I don’t have the vocabulary for how awful I feel. It is making me frustrated and irritable too. My OH’s ears are still ringing for calling me paranoid today. A resounding lecture about language regarding mental health. I am a bit though. Thanks for listening !

[Hidden in reply to SheffieldJane]

Just because you are paranoid doesn't mean your adrenals aren't out to get you. 😉

[SheffieldJane in reply to Hidden]

🤣

[PMRpro Ambassador in reply to tangocharlie]

I've always heard up to/at least a year - and I'm not sure that applies to by any means everyone ...

[lesley2015 in reply to tangocharlie]

thanks both of those reports are very interesting - I wonder if our adrenals wait to kick in once we are completely off steroids or when we get on a low dose - anyone know?

[PMRpro Ambassador in reply to lesley2015]

They should start at about 5mg - topping that up to the amount the body needs which is thought to be about 7.5mg. It can manage on less but not as well. It isn't an all on/all off system, it tapers back in.

[lesley2015 in reply to PMRpro]

Thanks PMRpro, this is very interesting - I mentioned to my GP and consultant whether my adrenals could be making me feel lousy and both said no, very unlikely ....... I sometimes wonder whether they really believe this or just want to ignore it ..?

[lesley2015 in reply to PMRpro]

would it be worth asking for a Synacthen test? would it be appropriate to ask and if so would it be useful?

[PMRpro Ambassador in reply to lesley2015]

What dose are you at now? How do you feel?

[lesley2015 in reply to PMRpro]

I was down to 5mgs, 3 weeks ago told consultant I felt tired, miserable, bit achey and she said to up to 6mg. Didn't help much, the fatigue is really constant .... she put me on duloxetine, I took one tablet and it made me feel awful - she wants me to try Nortriptyline now, for pain and improved sleep, but I don't want to especially if it's my adrenals!

[PMRpro Ambassador in reply to lesley2015]

At 5mg you are at the borderline of a synacthen test being meaningful. I don't see why she thinks the other drugs will help more than what you are already on but occasionally they do. I think a lot of doctors are totally unaware of the adrenal link - but really I don't know how you talk them round!

[lesley2015 in reply to PMRpro]

Yes mine seemed completely dismissive - what dose would you suggest is most meaningful?

[PMRpro Ambassador in reply to lesley2015]

3mg is where some endocrinologists set the bar. If you can get that low. You can possibly get an indication at 5mg of whether they are able to work - but they will see better at a lower dose.

[Lever]

I was told that reducing by 1 mg a month is too aggressive. My Rheumotologist is having me reduce by 1/2 mg a month.

[Hidden in reply to Lever]

Mmm can’t say my rheumy is that good, my GP is thankfully but sometimes feel between a rock and a hard place!

[Lever in reply to Hidden]

I totally understand. I’ve had three Rheumatologists...

with different schools of thought. That’s why I appreciate this forum so much. You can research through all the topics and comments. All the best to you.

[Gary1310 in reply to Lever]

My Rheumatologist ( MarshfieldClinic, Wi.), has me tapering 1 mg per Month. I stared 3 mg. Today. Feeling well, so far.

[Gary1310 in reply to Gary1310]

PS...Stress is terrible, try to rest as much as possible. I take a nap daily. Limit

my chores to 2 minor things per day. Bed at 9 pm, up at 5 am,

[tangocharlie in reply to Lever]

That seems very sensible to me, based on my own experience of difficulties reducing doses.

[Lever in reply to tangocharlie]

I agree. Best wishes.

[Daffodilia]

So stressful when children break with partners - may be go back to dose you were ok on for a month?

[lesley2015 in reply to Daffodilia]

thanks that is what I have done and already feel life is worth living again.... we moan about the little white tablets and the side effects, but still feel very grateful for them!

[Hidden in reply to lesley2015]

I am glad you are feeling a bit better. It is amazing when you realise how bad you were feeling!

[lesley2015 in reply to Hidden]

Aw thank you .... yes for me, the flare creeps up gradually and I make excuses for feeling so ill, until the penny drops lol!

[Hidden in reply to lesley2015]

Ditto.... 🌻

[ignatz]

Very sorry to read that you are helping with a marriage break-up. I suspect that the stress leads to the flare-up.....but I am neither medically qualified and a bit of a newbie as this is only the 2nd anniversary of my PMR.

[keepfitdoll]

Hi Lesley

I too have a flare. Just got down to 6mg and was doing very well. Last week started to get pain under the ribcage. Everything else is ok. I read this could be due to inflammation as I am lowering. I have put the preds back up to 10mg with the intention of going back down slow. Pain still there but slightly better. If no improvement will see GP in case it is something else.

Hope you get better soon. You have had this condition for a long time.

[lesley2015 in reply to keepfitdoll]

HI Keepfitdoll

Yes quite a while now, took a while for diagnosis and also seems to be hanging on in there too ...... but convinced I will eventually be off the preds, not just yet it seems.

I hope your flare settles and you continue your journey without anymore flares!