Bad news from Rheumy just now.,😱

[Angelsmummy]

Bit like Spike Milligan on his headstone,,,,,told you I was ill!Shouldn’t be so blaise about it but just had phonecall from Consultant with regards to results of Synacthen test….0-127. 30 160 60 174.Told me to jump to 15 mg straight away ,bloods again on Thursday,and getting in touch with endocrinologist ,steroids for life, but hey ho plenty of people on here in same boat,at least I know why I felt so awful.Other symptoms I have been experiencing she said suggests a flare.At least I know now.and have a plan!xx😜

[Nextoneplease]

Briefly Angelsmummy

Sorry to hear this but glad it’s definite news and you have a plan!

In haste, hugs 🤗🤗xx

[Angelsmummy in reply to Nextoneplease]

Thankyou,just glad that I asked for a test really and that they obliged me.,Least I won’t have to worry about tapering anymore I guess!xx💐😜

[PMRpro Ambassador]

Dear me -that's a bit dramatic on his part and really unlikely to be necessary. What dose are you on at the moment - looked back at posts but can't see,

[Angelsmummy in reply to PMRpro]

Do you mean the increase to 15 mg PRO?Am currently on 10 mg from 41/2 because of flare😜

[PMRpro Ambassador in reply to Angelsmummy]

What were you on just before the SST was done?

[Angelsmummy in reply to PMRpro]

4 and a half mg,it was done on the 30 th Dec.Didnt up pred until about 9 days ago x😜

[PMRpro Ambassador in reply to Angelsmummy]

Then even at that, it is not in the least surprising that your SST showed not a lot in any respext - 4-5mg is loads to suppress natural production of cortisol so the basal level is going to be very low and there is unlikely to be must response when then adrenals are kicked either. There isn't a lot of point before you are down to about 3mg pred and even then it can be pretty so-so as SnazzyD will tell you. It does NOT mean that you will be on pred for life - but as you say, she won't be nagging you to taper I suppose!!

But if you ARE flaring, you appear to need more than 10mg - but in adrenal insufficiency, it is difficult to say it is a flare rather than the adrenal insufficiency.

[Angelsmummy in reply to PMRpro]

What a conundrum !Suggestions PLEASE!Really think it was a flare because of sweats,shoulder,neck and groin pain and the fatigue was shocking.Perhaps she was panicky because of my previous sight loss?x😜

[PMRpro Ambassador in reply to Angelsmummy]

It is a massive conundrum - and one the average doctor doesn't appreciate. One we bang on about day after day!!!

Yes, I think it IS a flare - the fatigue is possibly worse because of the adrenal insufficiency but the adrenal insufficiency isn't as bad as she thinks it is - the 4.5mg pred is similar to the usual replacement dose endocrinologists use.

What she is doing is safety first - and if you taper slowly you should get well below 10mg again. Eventually the GCA WILL burn out and you will be able to taper the pred further because it is gone and the only consideration is the adrenal function. But she may be happy to leave you at 5mg ongoing to compensate for the fact your adrenal production of cortisol is still suppressed.

Then, to some extent, it is up to you whether you are happy accepting pred for life. It isn't a certainty though. which is what she seems to think.

[Angelsmummy in reply to PMRpro]

Thanks so much PRO,so in my whirlwind of thoughts,go up to the 15 mg that she suggested yeh,and then start doing the 7 week 1/ 2 mg taper that I was doing ?Stay on the 15 mg for what …2 weeks until I start reducing?Think I will phone her tomorrow and put it to her about 3mg or less to get a true SST result!!xx💐💐💐😜

[PMRpro Ambassador in reply to Angelsmummy]

I wouldn't bother at present - just get the flare under control, don't think ahead until that is done. Concentrate on YOU and just one thing at a time otherwise you end up getting confused and worrying about it.

[Angelsmummy in reply to PMRpro]

So her telling me to stay on 15 mg until she speaks to endo,shoukd I just ignore that and just do the 7 week taper protocol?

[PMRpro Ambassador in reply to Angelsmummy]

She told you to stay at 15 until she gets more info. I suspect that will change her tune. But yes, stay at 15mg for now.

[Angelsmummy in reply to PMRpro]

Many thanks again!xxxHope in my next life this bloody disease don’t come back to haunt me!xx💐💐

[PMRpro Ambassador in reply to Angelsmummy]

YOu are overthinking it all and worrying too much. Just take it one step at a time. This step is take 15mg for a few weeks.

[Angelsmummy in reply to PMRpro]

I know,I know,I know,stupid me.,just SO hard going from being healthy to this and worrying about OH and trying to function feeling like this.Of course I will get better but I think that Ihave always got it in my head about losing other eye.,Must put my big girls pants on ….AND grow up!xxx💐

[PMRpro Ambassador in reply to Angelsmummy]

DL and I know all about it. Been there, done that. You need to try and access all the help you can - this isn't in the pandemic, But you cannot keep it up - it is probably part of the problem.

[Angelsmummy in reply to PMRpro]

Probably,can cope quite well when not in a flare so hopefully the 15 mg will get me back on the straight and narrow.Many,many thanks again.No doubt zi will be back!.,xx😱💐💐💐💐

[Tappo in reply to Angelsmummy]

You are not stupid, just overwhelmed. Everyone is different and it is no small thing to lose your sight. You should be rightly concerned about your good eye, as would any sane individual. The advice given already will help you - just deal with one thing at a time and get your symptoms under control in this current flare. I’m sure that will help you feel less overwhelmed. Take it nice and slow and hopefully you’ll be able to get back down to a lower dose and then think about repeatingadrenal test.

[Angelsmummy in reply to Tappo]

Thanks So much T,overwhelmed just about covered it! On reflection I think I must have reached my level at about 7 mg,after that ,even with a 7 week taper at 0.5 mg I was not good,just put it down to skeletal issues,adrenals waking ,and general old age.But never mind,if I have to stay on a reasonable dose for ever( As PRO does) really don’t care anymore,just want to stay pain free and have a quality of life back.Thanks again for your kibd reply.xx💐😜

[Temoral in reply to Angelsmummy]

This is exactly how I feel...in a similar position, but not with site loss...yet..and want to keep it that way. If you are overwhelmed, it's so difficult to think clearly. Stay on one dose and relax for a while was advice given to me....Good luck. X

[Angelsmummy in reply to Temoral]

Will do,think I need to find this dose and embrace it,High low,what the hell,need my life back!You take care of yourself now eh?xx💐💐😜

[Potemkin in reply to Angelsmummy]

It's really overwhelming and you're not being stupid. There's a lot going on so give yourself a break. Think what you would say if someone else posted this. Please try and be kind to yourself. No need for big pants! Take care of yourself and try and find something you can do today in the form of self care. x

[Angelsmummy in reply to Potemkin]

Thsnkyou P for your kind words,they are much appreciated.I have a cab coming to take me out to Tesco!I can just mooch around the sales clothes( awful!) get a few bits then a nice relaxing cuppa in there.At least it gives me a couple of hours to myself.As you say,what advice would I be giving somebody else on here?I Would be saying listen to the WISE ONES and be kind to yourself!!Many thanks again P.xxx💐💐😜

[Potemkin in reply to Angelsmummy]

Clothes shopping, cofffee and people watching. Perfect x

[Angelsmummy in reply to Potemkin]

Maybe a bit of shoplifting..?xx💐😜🤣🤣🤣🤣🤣🤣

[PMRpro Ambassador in reply to Potemkin]

Omit the clothes part, straight to coffee and people watching ...

[Angelsmummy in reply to PMRpro]

Would the shoplifting been ok then?!HATE their clothes in Tesco,only good thing are their leggings just got back,just a load of healthy veg,salad ,treats for animals and OH ?Feel whacked and didn’t walk round much at all,so am going into a comatose state for rest of day.Increased Pred spacing me out a bit but better than a bottle of wine!Thankyou again for yesterday PRO,DL simplified it for me this morning,so am just going to go with the flow and sod the tapering for a wee while!xx💐😜

[PMRpro Ambassador in reply to Angelsmummy]

I treated that with the contempt I though it deserved ... 😉

[piglette]

As the adrenals usually go to sleep by 10mg of pred, I agree with PMRpro, 15mg does seem like an over reaction by your consultant. What type of consultant is he?

[Angelsmummy in reply to piglette]

She is a rheumatologist.Think she might have done that as I am still getting scalp andneck pain,I don’t know.She was telling me so much on the phone .

[piglette in reply to Angelsmummy]

I am not sure how much some doctors seem to know about steroids or any tablets if it comes to that!!

[Angelsmummy in reply to piglette]

Maybe she is being over cautious ?😱

[Angelsmummy in reply to piglette]

Think I have a plan now P ,and PRO has explained and sorted my head out a bit!Will stay on the 15 mg because of my flare and see what Rheumy comes back with once she speaks to Endo,but pRO said he wouldn’t entertain me with a flare and the dosage I am on anyway.Guess she is just either passing the buck or worried .As you say,they don’t know about tablets etc so how am I expected to take it all in?xx💐💐

[Strippy]

Oh dear - so sorry - at least you now have a plan - and it explains why you have felt so bad. Will she follow up with a letter and all the details so that you can take it in more easily. Its difficult on the phone isn’t it - so much to absorb especially if you are not expecting it and had time to prepare

Love and hugs xx

[Angelsmummy in reply to Strippy]

Well,after hearing from PRO and Piglette I am in a quandary.,Ugh!Will send you a DM later.,xx😜💐

[Nextoneplease]

oh dear Angelsmummy 🥹 x

Take it step by step? Deal with flare with 15mg, gives you time to assess and then gradually taper. As PMRpro says, it may turn out to be up to you how far you taper, given rheumys view…

Take a deep breath and deal with flare - the rest will follow in due course xx

[Angelsmummy in reply to Nextoneplease]

That’s the one!Think we are doing ok then BAM! Cest la vie.,xxx💐😜

[PMRpro Ambassador in reply to Angelsmummy]

It is always the same and why we always say not to get a specific date planned or worry about what might happen down the road. It might never happen!!

[SnazzyD]

Flare comes first. Adrenal recovery second. I will say though that at 4.5mg my adrenal glands were about like yours, rubbish, and I certainly felt it. My Endo’s just told me to keep reducing in order to trigger the adrenal axis by being in continual deficit. By 1.5mg it was much better. Giving up on your adrenal axis at this point seems barmy to me and perhaps using hydrocortisone instead of Pred is indicated. 15mg to deal with that seems odd. The Rheumatologists I dealt with didn’t have the first clue about the practicalities of regaining adrenal function. However, IF it is the flare symptoms that has prompted their action, then that’s a different matter. Might be overkill but needs must perhaps.

[Angelsmummy in reply to SnazzyD]

Think the 15mg was for the flare.She told me the endo Would put me on hydrocortisone..WISH I was as bright as you lot! Thanks Snazzy!xx💐💐💐

[PMRpro Ambassador in reply to Angelsmummy]

The endo MIGHT put you on hydrocortisone but they certainly won't if you are in a flare. The primary concern is the GCA being controlled - especially as you have such poor vision anyway. And it is unlikely the endo will take you on UNTIL you are down to a much lower dose of pred. Purely because they don't have a magic wand either!!

[DorsetLady PMRGCAuk volunteer]

Others have replied whilst I was asleep, but agree with PMRpro and SnazzyD -stay at 15mg for a couple of weeks… you might then be able to drop back to 10mg..and then start slow taper, but you cannot be sure at the moment. And I think we have said you had got quite low in a quick-ish time… so maybe time to slow down.

Think things have been confused by adrenals stuttering and a flare together… and your consultant may have overreacted and set you in a panic. I can understand why she suggested 15mg because of your history, but hopefully things will have settled at bit by next round of blood tests.

[Angelsmummy in reply to DorsetLady]

Thanks very very much DL.very practical advice.Going to sit put on 15 for a while,give myself a chance to repair then put your plan to whoever contacts me first ( dr/ Rheumy,) though even though I can laugh now,neither are Inspector CluedoxxPS actually slept all through night apart from 2 am pred!Result!xx💐💐

[londonish]

Nothing practical to add, but just wanted to wish you luck for what may turn out to be just a 'blip' in this long, slow scheme of things xx

[Angelsmummy in reply to londonish]

Many thanks L,only having to do what so many on here have to.Annoying but oh so nice not to have the pain !xxx💐💐

[Fatsiajaponica]

Also nothing to add but sending positive vibes and a hug.🌷

[Angelsmummy in reply to Fatsiajaponica]

Thanks F,a little step backwards but will get there in the end,xxx💐💐

[Nutsandseeds]

Sending hugs xx

[Angelsmummy in reply to Nutsandseeds]

Thsnkyou N,hope you and partner are ok?xxx💐😜Hx

[Nutsandseeds]

Having a new bathroom installed during latest cold snap not our best planning🙄 . It’s downstairs so doors open all the time 🥶🥶🥶. You keep safe and well Jx

[Angelsmummy in reply to Nutsandseeds]

Gosh,as you say,not the best idea.think I would be living upstairs or hibernating.Bathrooms and kitchens a real destruction !Stay warm and hopefully you both have your thermals on!xxx🤣😜

[Nutsandseeds]

YES!!!! 🤣🤣

[Pixix]

I as told that at one point! But I had the test at too high a dose. Then I had a consultant who told me to go from 5mg to zero in six weeks or I’d be on steroids for life & that I wasAddisonian. I didn’t go back to him, I just work with my GP, & now I’m down to 1mg. Try not to worry so much, & to let it take over your entire head & thinking, I reckon! Take care, & rest, S x

[Angelsmummy in reply to Pixix]

Will do.,x💐😜

[Nagswoman]

I have never had a synacthen test in 8.5 years. I did have a cortisol test, supposedly needed at 8.30am, before my steroids, but the person at the surgery said he did not do those and I had to go elsewhere at 1.30pm, after my steroids. No idea what those results were.

[Angelsmummy in reply to Nagswoman]

Right,I too had to be there at hospital for 8,30,three lots of bloods taken at intervals .For the Damon good it has done ,shouldn’t have bothered but never mind ,something else zi have learnt from the forum!xx💐😜