Flare, adrenals or what?

[Miserere]

I have been slowly reducing by .25mg each time from 7mg. Two weeks ago I reached 6.5mg and felt fine. Up and ready for each day, walking and doing whatever I do normally. I felt particularly good. Just over a week ago, after being on 6.5mg for three weeks, I tried dropping to 6.25mg - this was just a week ago. At first all seemed OK but then some odd things happened.

I developed a bruise on the back of my left hand and the middle finger joint became painful and would hardly bend; my supposition was that I had knocked it without realising it (happens often) and it has now cleared. I am getting some pins and needles occasionally in my fingers and my neck started feeling a little stiff. The day I started the reduction I also bought new walking boots as my old ones are no longer really waterproof and, after the knee replacement, I now found that I could walk 3-4 miles - the freedom is such a joy! I tried the new boots next morning - of course they are stiffer than the old ones and need to be worn in. I did a walk on pathways of just under a mile and my thighs suddenly felt tighter and heavier and this affected the replacement knee which began to hurt a bit. I blamed the boots, of course and am using the old ones again. Today, although I felt OK when I got up, during the same short walk (with the old boots) my legs began to feel tired and heavy on the thighs.

I had some pots to plant up when I got home so carried on and did that - very little in comparison to what I normally do. However, I now feel tired, achy and run down. My husband says I look pale but BP is OK as I checked. So, today I increased Pred to 11mg in the hope it will catch any flare.

I am also irritable, a bit emotional and a bit down. All this as we have just booked a break and I want to feel OK for that. I am checking the sides of my head as I dread GCA but seem OK, pings of a headache every so often but nothing more than that.

My arms will lift easily enough, my upper legs ache as do the knees, the neck/shoulders ache. I am off for a magnesium bath shortly.

This is the worse I have been since developing PMR after the Pfizer vaccine. Once the GP prescribed pred the symptoms disappeared although I have had three flares which I have treated as per the protocol and that has worked. My brain still seems to be working (in it's own fashion) so I don't have brain fog at present which, in the past, I have experienced. I actually began to think the adrenals weren't doing too badly.

Sorry for the long read - it's just that these symptoms somehow feel 'different' - not sure how but they just do. I am hoping increasing the pred will do the trick - just wondering if anyone else has experienced similar symptoms? I wonder if I need to stay at 7 or 6.75mg for now. So bitterly disappointing as I was trying to creep past this sticking point this time. Thank you.

[DorsetLady PMRGCAuk volunteer]

New boots…. in hindsight, should have broken them in much more slowly.. even if it’s just around the house for 15mins at a time and building up a time goes by.. definitely not a long walk as starters.

As for potting up after a walk and not feeling brilliant - even though not as much as usual - not a good idea..

Hope the extra sorts things out..and I’d treat as a flare following usual protocol -,and back to 7mg - and give that a month to settle things - adrenals included.

[Miserere in reply to DorsetLady]

Thank you, DorsetLady. Yes, slower breaking in needed. I have been able to do much more lately, until now, and retained energy levels so the last one or two decreases were just too much. Oh, this thing is abysmal - sucks hope out of you on a regular basis.

I suspect stress plays a part as well - house on the market for the third time - keen buyers turned up and we felt optimistic and encouraged by the agent went out and searched for a new home. We found the ideal one quite quickly only to find that the keen buyers' buyer had done an about turn. It does wear you down, especially after the third time. Add politics (yes, I have been trying not to watch news or read the papers for some time, but ...) and the sleaze that accompanies it - words fail me, fortunately.

[DorsetLady PMRGCAuk volunteer in reply to Miserere]

Yes lots of stress - on house particularly.

Have given up on following politics- as you say too disheartening- and no point really until election time.

[Miserere in reply to DorsetLady]

Now pains down into the fingers - I am off to bed in the hope that it will ease a bit by morning.

[PMRpro Ambassador in reply to Miserere]

I gave up TV while at the daughter's (they refuse to pay TV licence!!!) and haven't gone back to Sky News since I've been home! Bit quiet - but defintely less depressing!! I get the main events from the local German/Italian news progs and they are a lot less detailed ...

[marionofnorwich]

Just Radio 4 for me, no TV news but I try to remember all te good things I encounter in my daily life, both online or off, but I do realise how lucky we are to live in this country (those that do) or other affluent countries and empathise so much with those that have little and are desperate and struggling. It make me feel grateful to 'only' be struggling with PMR

[Miserere in reply to marionofnorwich]

I am, indeed, grateful for all the good things in my life and there are many, particularly my husband who is wonderful. No more papers for now - possibly never again.

[Camelian]

Similar to you I was doing a slow reduction of 0.5mg but from from 15mg approx every 8 weeks- as I appear to be very sensitive to reducing. When I got down to 6.5mg I felt awful- extremely fatigued, neck pain, intermittent ear pain, constant headaches, nausea ,joint pain at varying degrees and that heavyness you mentioned. After seeking advice from others on here and speaking to the GP and endocrinologist who I was referred to my rheumatologist for help with reducing re- possible adrenal insufficiency based on a test for the same,I went up to 10mg while awaiting review by the rheumatologist-im still waiting for that🙄. Everything settled down at 10mg. I stayed at 10mg for about 6-8 weeks then dropped to 9.5mg. initially with this drop I got the usual Adrenal insufficiency type symptoms including nausea, and feeling fluey, with intermittent headaches, tender scalp etc for about 2 weeks then things settled for a week or 2 then I started with the headaches and nausea deadly fatigue ,aches and pains in various places that came and went including back and rib pain and lots of hot flushes 🤷 my mood was much like you described. I have good and bad days with regards all the symptoms mentioned. I have been miffed about why I'm getting all these symptoms at 9.5mg as I was stable- ISH before dropping from 7mg to 6.5mg?My concern has always been GCA due to the symptoms I get and have had intermittent since the start of this journey approx 2 years ago- headaches,ear pain,face pain,pain and sensitivity in my teeth, neck pain, tender scalp but the general consensus from my GP and rheumatologist is that is not GCA - bloods have always been in normal range even at the start and a pet CT scan in January was apparently reassuring.

I can truly understand how disappointed you are feeling as I feel the same. This seems to be never ending with new symptoms coming and going like the recent back and rib pain which incidentally don't seem too bad at the moment 🤞 but stopped me in my tracks for a few days. Also in addition to the symptoms mentioned I get a number of digestive issues including constipation - which I've had to have investigated and luckily is not anything sinister,🤞. Funnily enough unlike yourself I don't seem to bad in the morning my symptoms tend to come on through he day. I take my pred about 12 noon. I take lansoprazol about 8am, cali- chew about 10 and pred at 12pm. I take meds for other conditions at night so this was the best way to fit all the meds in. I do hope you find some resolve

I've got my fingers crossed for you 🤞🤞🤞

[Miserere in reply to Camelian]

Hallo Camelian - you're right, we do seem to have something similar. I am not stiff first thing in the morning and my arms move freely - no problem with raising them at all. The rheumatic pain seems to be around neck and shoulders, down the arms into fingers, right shoulder in particular, heavy thighs after walking and aching around the hips but not as bad as when I first had PMR. Pings of pain around the head rather than real headaches although no tenderness in the scalp; some discomfort around jaw but no ache and no problem eating. In fact that's why I didn't associate it with a flare - it feels 'different.'

I, too, am disappointed and don't understand why I struggle to get below 6.75mg. However, I have increased to 11mg and will stay here for a few days before dropping back to 8 and then 7 to start all over again.

I remember when the GP diagnosed me and put me on Pred - she explained I would have to taper down to get off it but then in what sounded like a snide remark said 'if you ever do.' That sets you up for success, doesn't it?

On the odd day that I have forgotten to take my Pred in the morning I often don't notice until much later in the day and that's because of brain fog rather than pain.

Oh, well, I am not going to spoil the first break we have had in a long time with PMR - if necessary I will just take the tictacs.

I do hope you get some answers, Camelian, and I shall try to follow you to find out how you get on. It is amazingly frustrating and a difficult journey even though you feel it ought to be simple. Good luck and thanks for responding.

PS - I am going to try carnivore for a few days - some people swear by it although it's not something I want to do for very long - so scrambled egg and salmon this morning. Let's see what happens.

[Camelian in reply to Miserere]

Hi Miserere

Coincidentally I've started a protein diet today as well because I've put sooooo much weight on and I'm trying to do a bit more exercise as well so🤞🤞

I'm the same if I take the pred later for whatever reason I don't really notice till my head starts feeling strange I get a type of G-force feeling in my face as well which incidentally I got when I first started pred much more than what I get now. I just cannot figure out a pattern to my symptoms. More recently I have started getting ear ache more often as I'm getting near the time I take the pred. But then i can also get these symptoms around tea time or early Eve when the pred dose should be at it's peak as I take it at 12. I also get the jaw discomfort but not when I eat 🤷 I'm diagnosed with TMJ but who knows? The fatigue is also a massive issue for me at the moment I just feel exhausted with very little activity, and I seem to have very little patience and I get really irritated at smallest things.

I get the symptoms just as you describe the only difference is when I got to 6.5mg the headache was constant but at low level I'd describe it as sinus type pain because it was also across my face and in my ears. I also get tinnitus on and off and when at 6.5mg I would get breathless, not particularly when moving it could come on when sitting and I've had palpitations on and off and breathlessness at my current dose especially last week when I felt really off, I'm not to bad this week🤞. A new feature I had when I got to 6.5mg was a burning sensation mainly on my face and around my hairline and itching especially on my head I've no idea what that's all about 🤷

I'm supposed to be seeing the rheumatologist for review and a plan with regards the reduction. I was referred to the endocrinologist by the rheumatologist for support with reducing but in light of the symptoms I get when reducing and my concern that the symptoms may be GCA related the endo referred me back to the rheumatologist for further investigation of symptoms so the Saga continues but there's never really any answers.

I will let you know the outcome of my review with the rheumatology.

Take care and good luck.

[PMRpro Ambassador in reply to Camelian]

Have those palpitations been investigated? They should not just blame pred - patients with PMR are at a higher risk of developing atrial fibrillation and that increases our risk of stoke when not managed properly.

[Camelian in reply to PMRpro]

I've had palpitations on and off over the last few years, I've had investigations and was told at one point I had a eptopic heat beat. I stopped having them for a while but they seemed to have returned. I had an ECG not long ago as I was getting chest pain and that came back ok. I will mention the palpitations to the doctor at my review later this week and the breathlessness. I was thinking it may be related to the adrenals struggling??

[PMRpro Ambassador in reply to Camelian]

Were you having palpitations when they actually did the ECG? Unless you were it is pretty meaningless! My ECG is fine the rest of the time! It can be due to adrenal insufficiency - and the sort that develop do need to be paid close attention to. So yes, do mention it and I hope he listens.

[Miserere in reply to Camelian]

I do hope your appointment does not take too long to come through.

I haven't suffered any of the fatigue this time; in fact my energy levels have been good throughout (thank heavens). I can understand TMJ causing the jaw ache - the lower the dose of pred then I notice how much tighter I clamp my jaws together. Not reading the papers etc. may well help with that. I find myself so cross these days - merit is something that is no longer rewarded but the person with the loudest voice always draws the attraction and they are unapologetic when they get things wrong. It seems to me that we behave like seals in a pond, making the most noise to attract the most food.

On itching - since puberty my scalp has itched on and off over the years. It disappeared on 15mg but as I reduce is coming back with a vengeance.

I hope the palpitations settle down or are properly investigated soon. Take care.

[Bluey-1 in reply to Camelian]

Agree with PMRpro. Do get the palpitations checked out or buy a smart watch that does an ECG and tracks Afib. In Aug 23 I had a TIA linked to Afib. I assumed some of the symptoms you describe were related to pred as I reduced. I was given meds by the stroke doctor and sent on my way. In June this year armed with increasing symptoms (particularly breathlessness on exertion) and my smart watch data I saw my GP. Bloods showed high BNP levels so I was referred to cardiology. Cutting a long story short the wait times for tests alone were long so I spent a small mortgage amount (well ours in 1991!) to have a heart monitor, echocardiogram and ablation done privately. I did see an NHS consultant but as the wait time was 18 months for an ablation, at 70 looming this year, I did not want to waste my early 70s feeling so ill with atrial flutter / fibrillation. Four days now after the ablation and fingers crossed it’ll be sorted. It’s really hard to work out what is what with different health conditions and associated meds. It’s been stressful. My CRP numbers had risen over the last few weeks up to 52 from low single figures. No GCA symptoms but my rheumatologist increased my pred to 10mg from 2.5mg (diagnosed with AI at this point) so I was safe for the op. I was very nervous about having the ablation with all the other things wrong with me but the surgeon and anaesthetist were brilliant. My rheumie has been so supportive, ringing me weekly during this last month as I had a new nightly cough during this period. She organised a chest X-ray which fortunately came back clear. Didn’t want anything to jeopardise having the ablation. Having bloods for her Monday then we’ll catch up to discuss the taper if all is well. Good luck. As a relative said, it’s hard work (and can be expensive!) being ill.

[Karenjaninaz in reply to Bluey-1]

Bluey, I had the newest form of ablation for a fib April 15. I am very pleased actually however it is important to realize that over the ensuing months heart needs time to heal;its normal to have some irregular beats during that time some shortness of breath- some some similar things that you’ve had before. after. the ablation the heart needs time to heal., So don’t worry if you feel strange. I did not taper during that time. I just stayed at 6 3/4.

[Bluey-1 in reply to Karenjaninaz]

Ah thanks, I was made aware about healing time and irregular beats. I am taking things easy as I don’t want to scupper recovery. Had good news today. Have an NHS appointment for a heart monitor for check up in Dec. I’m basically now back in our NHS system which is a financial relief.