So fed up!

[Strider68]

I've been on pred for 2 years with GCA, following lots of tests I had an inflammatory marker of 198. Was put on 60mg of pred.

Sine then I've had ups and downs, trying to reduce meds very slowly, then finding various health issues.

I've been on 7mg for the last 3.5 months and with the advice from my consultant I reduced to 6mg on Sunday.

For a day I was OK, but now I have a constant headache, neck ache, shakes, can't sleep, vivid dreams when I do sleep snd I can't really explain it, I feel angry all the time and so so tired.

Can anyone say

Is this a reaction to reducing by 1 mg

Should I continue and hope it passes

Go back to 7mg and see what happens.

I know you all know this, I so want to get off the meds as I'm sick of the side effects. I didn't have a problem with my heart or breathing till I started pred.

Sorry for the moan, I just long to feel better.

[PMRpro Ambassador]

At this stage your are bordering on the sort of dose where your adrenal glands have to wake up and start to contribute with some production of cortisol so your body can function well. I think your body is probably struggling with the size of change of dose all in one go - the speed of the onset of the reaction suggests that, The symptoms you describe are fairly typical of that.

Do you just change the dose overnight from every day 7mg to every day 6mg? You might find it less uncomfortable to change by half a mg at a time and also to use a slowed taper of the sort described under Tapering in the FAQs.

[SnazzyD]

How are you feeling right now a week down the line? As bad?

Can you describe the neck pain and headache?

What were you doing in the few days before this crash?

The question is whether you are actually ill with something like covid, suffering from low adrenal function or having a flare. The mood and dreams points to the first two for me.

Have you read the bit in the FAQ’s about adrenal function? If not, please do so as it is essential reading for those under 10mg but usually under 8mg. If you have low adrenal function, which is common about now, you can feel horrendous and need to know how to deal with it.

If it were me, I’d go back up and get some serious rest see if it eases off fairly quickly. If so I’d put my money on low cortisol . If that happens look into the Dead Slow Nearly Stop method of reducing and doing drops of 0.5mg only.

Otherwise we await your answers to the questions at the beginning.

[cycli]

hi Strider68. I see from your first post that you were on 5mg and now 7mg pred. Presume you've upped dose and got stuck .It is depressing and share your frustration. We all want to be off the drug and start to recover from its various effects. that is the second battle as unfortunately you need to be certain you are out of the grip of PMR and GCA. maybe it's GCA flare and maybe adrenals starting up again. Not sure. Hopefully someone else can advise. Bio. is a bit lacking. Maybe a bit more info would help people. Hope you feel better soon. Sounds like you may need to go back to 7mg.

[Strider68]

Thank you all for your comments. The headaches are nit severe as they were at my diagnosis. The neck pain is hard to describe I have psoriatic arthritis and often have neck pain. I have checked and do not have Covid.

As I've been on the meds for 2 years quite a lot has happened during that time. I've been told I have psoriatic arthritis, artial fibulation, and quite severe osteopath arthritis in my neck, ankles, knees and feet.

During this time I have been reducing very slowly, then something happens and I'm told to increase them again.

I will read the FAQ's and thank you for your help.

[PMRpro Ambassador in reply to Strider68]

"I have checked and do not have Covid." - the quick tests are extremely unreliable for the current versions of Covid. My daughter tested 4 times on consecutive days before getting a positive!

Was the a/fib after you started pred? I have a/fib but it was there long before I was put on pred and is adjudged to be due to the PMR, or at least caused by the autoimmune part of PMR which damaged the electrical cells in the heart that govern heart rate.

[Strider68]

The a/fib started 8 months ago, so 16 months into taking pred.I reduced the pred by1mg on the advice from my consultant.

[PMRpro Ambassador in reply to Strider68]

Fair enough then. And did reducing by 1mg make a difference to anything?

[Bluey-1 in reply to Strider68]

My AFib was diagnosed 14 months after GCA diagnosis but the consultant said he thought I’d had it for a while. I had a TIA when it was diagnosed. No one is saying there are links to pred or GCA. I wonder though…

[PMRpro Ambassador in reply to Bluey-1]

Pred is said to cause arrythmias. With GCA it could be the same as for me with PMR - the autoimmune part leads to damage to the electrical cells in the heart.

[Bluey-1 in reply to PMRpro]

That’s interesting. I’ve never been told these could be connected, I’ve just suspected it. I had / have no indication of palpitations but I occasionally have a high resting heart rate and feel quite drained at the time.

[PMRpro Ambassador in reply to Bluey-1]

Has it been investigated?

[Bluey-1 in reply to PMRpro]

Had ECGs and MRI at time of diagnosis of Afib/TIA then put on blood thinners, Bisoprolol and statins. I suppose I’m unsure whether there should be more follow up. Seems to be a case of keep taking the drugs. I have a doc appointment late April to follow up on new statins so could bring it up then.

The good news is I finally had a steroid jab for the Morton’s neuroma in my foot (was postponed due to GP absence then my Covid) which seems to have worked.

[PMRpro Ambassador in reply to Bluey-1]

I don't get a lot of follow-up. There isn't a real cure for a/fib although these days ablation is much more successful than it used to be and is now used a great deal more for persistent cases. The blood thinners are the most important thing it is felt to reduce the risk of stroke due to disturbance of clots settled in the base of the heart. I developed brady/tachy syndrome where after a period of tachycardia you have a period of slow heart beat and mine was rather extreme with 7 second pauses so I got a pacemaker. That is checked annually but very little said about what it shows. The medication I was on originally only lasts for several years before becoming ineffective and after the bivalent Covid booster the a/fib went mad. No-one seemed too bothered and I didn't get offered a more urgent appointment to see the electrophysiologist nor to have an ablation to sort it out and it was over a year in the end (not in the UK). When I did see the EP, he changed my medication which made a big difference.

To be honest, I wish I'd made more fuss - I never bothered going to A&E as it had usually sorted itself by the time I got there and the heart rate was usually up to 130 in spikes and lower between so I waited it out. I did go once when the heart rate was 180/190 - and got the emergency doctor on blue lights when I called for an ambo! But that was different, not the usual a/fib. But last year was badly affected by it and I feel so much better since the ablation - plus my swollen ankles have gone!

Glad the steroid jab worked!

[Bluey-1 in reply to PMRpro]

Thanks Pro. The doc did say the blood thinners were the most important. My dosage was dropped to 30mg Edoxaban following a review with the practice pharmacist due to concerns about kidneys after blood tests. It’s hard to know when to make more fuss especially when you’ve several issues. I think oh god I can’t be doing with more medical appointments.

[PMRpro Ambassador in reply to Bluey-1]

I suppose it is when it is really interfering with normal living. And my a/fib stuff didn't feel any worse in that respect than the previous year or so with OH being so ill and Covid lockdowns. But looking back - it was a real pain ...

[Bluey-1 in reply to PMRpro]

Glad things are a lot better for you since the ablation. I feel I’m just getting into more normal living than a year ago which is a good sign. Just had a lovely few days in Portugal and only taken a day to recover from the travel and late return flight.

[cycli in reply to Bluey-1]

"Seems to be a case of keep taking the drugs". Exactly Bluey-1. I know where you are coming from. seeing GP tomorrow for annual heart and health check. I'm going to quiz them on whether I can stop some or reduce dose as I really don't like taking so many. As someone who never in 70 years took any drugs unless specifically prescribed to get me over something, this constant cocktail worries me.

[PMRpro Ambassador in reply to cycli]

Bear in mind though that feeling better is usually because the pills are doing their job! Especially for cardiac stuff - the reason someone doesn't have high BP is because the pills are doing what they should be!

[cycli in reply to PMRpro]

I know, but, I'm not certain that they trim the dose to my specific need. I realise they don't have the time, budget or resource to do this. That's why I get frustrated. Too much of any of these drugs beyond what we need specifically is not good.

[PMRpro Ambassador in reply to cycli]

Depends what it is - the dose they give is fairly standard for anyone and they titrate many. They start with a lowish dose and check the effect after a few weeks - in the case of hypertension, has your BP gone down enough or not? If it is too low, you get less, too high, more. It isn't entirely a guessing game even if it might seem so. The drugs have all been through extensive clinical testing when all is said and done.

[cycli in reply to PMRpro]

all true PMRpro. I am concerned about statins though. However well tested and approved there are some worrying reports coming out with possible links to MND. Who knows. Given what we already have with no real idea of why we have it we can never be certain that if we get something else it may be that we were just destined to get that too. Whether it is the drugs or ones disposition can never be proven. I just feel that the more drugs given in the cocktail the less certain we can be as to the cause.

[PMRpro Ambassador in reply to cycli]

Have a read of this from the MND Assocaition

mndassociation.org/sites/de...

which says

"To put this in perspective, looking at the four highest reported associations in the study, there were 78 cases of MND reported in 83 million prescriptions of Simvastatin, 20 cases of MND in 3 million presriptions of Lovastatin, 23 cases in 433,000 prescriptions of Pitavastatin, and 128 cases in 20 million prescriptions of Atorvastatin, so any possible increased risks appear small in real terms"

A doubling of risk of something that is extremely rare, remains extremely rare. It isn't a doubling of cases.

[Strelitzia in reply to Strider68]

Hi Strider68

I am in the same boat as you regarding pmr/GCA, just over two years on steroids. Since 7mg, I have been decreasing by 1 quarter a mg pill, and thanks to PMRpro’s advice, I stay on the new dose for 2 months. It’s agonizingly slow, but I am free of pain except sometimes for 10 minutes or so when I get out of bed I get a slight “reminder” in the back of my calves. I use a pill cutter for the pills, not totally precise probably but good enough. I hope you find your way through your challenges. Good luck.

[Strider68 in reply to Strelitzia]

Thank you

[DorsetLady PMRGCAuk volunteer]

Adrenals -

healthunlocked.com/pmrgcauk...

[Strider68 in reply to DorsetLady]

Thank you so much, I understand it so much more now. Why do consultants tell us to do these things. They must know.

[DorsetLady PMRGCAuk volunteer in reply to Strider68]

Not sure all consultants understand about adrenals… or any other specialism to be honest.

[PMRpro Ambassador in reply to Strider68]

"They must know."

They may have heard it one upon a time - but if it isn't directly related to their specific field they won't remember,

And to be honest - some don't even remember their own field ...

[cycli in reply to Strider68]

You would think so wouldn't you. However nearly 3 yrs experience has taught me that many haven't a clue.

[Grammy80]

I was DX with GCA in August 2019 and have been on Actemra and Pred since October 2019. Like so many others, I understand how you feel and what you are going through. Some of the more experienced and well-read have given you such good advice. I had no idea the roller coaster ride I was in for, the lows and highs, progress, then disappointment, and fatigue. The emotional effort that went into trying to keep positive was often draining. My world seemed a mess while my adrenals were coming alive. Then...there is life to deal with~! Just know that it will work out. It seems we have to walk on hot coals before the bright spots come. At present, fingers crossed, I very slowly got down to three mg...but still while on Actemra injections weekly. It is worth going at a snail's pace in tapering. My best💞

[Strider68 in reply to Grammy80]

Thank you, very kind words

[Grammy80 in reply to Strider68]

Be kind to yourself, indulge yourself in a nap if you are tired...listen to your body.💞

[Ridge]

lots of good advice above. One thing struck me. A drop of 1mg from 7mgs is a lot in terms of percentage. I think it is 15%. Not strong on the maths front! If your body is chugging along happily on 7mg it will feel a 15% drop of support. Try half or even a quarter of a mg on the dead slow method. Before joining this forum I fell foul of reducing as instructed by my Rheumy. Coming off pred is very difficult.

[Strider68 in reply to Ridge]

Thank-you, I really didn't realise that it could make so much difference. I took an extra 1mg last night and feel so much better this morning.

[PMRpro Ambassador in reply to Strider68]

It does depend on the person - some can sail down, most struggle once they get to this level. Never more than 10% of the current dose is a good rule - and add in a slowed taper as well for even more comfort,

[Ridge in reply to Strider68]

Stick on that for a while just to make sure then drop half maybe spread out twice in the same week. Obviously if you feel the first half drop don’t try again until you feel good. Etc etc. Good luck. Glad increasing solved the problem. That is also diagnostic.

[altywhite]

Hi Strider, it certainly is a roller coaster isn't it? You've been given all the advice b the experts. All I can do is sympathise. I was diagnosed in 2015...and am now on Pred 5mg long term. Lots of ups and downs for me, various Dmards which didn't agree with me. I found when I got to 10mg I just could not reduce by more than 0.5mg and then..extremely slowly. I also have PMR which kicked in a few years ago. I've adjusted to my daily pred and mostly I am fine, just dealing with this awful virus at the mo which I feel may have awakened the PMR a little. I hope you are feeling a bit better, you will find your way with the reduction. xx