New anxiety with pred reduction

[Heidi_SF]

Hello everyone,

I've been one Prednisone for 20 months, starting at 15mg. My reductions have not been without setbacks, but nothing too difficult, and I'd been doing a slow taper between new doses. Three months ago I reduced to 2mg and I don't recall any problems with that reduction. After 5 weeks at 2mg I had a visit with my GP and told her how well I was doing. Here's where I should have known better: she told me I was ready to come off the Pred, and to go ahead and reduce by 0.5mg every month. The next day I started with 1.5mg, with no slow taper. By the second day I had flu-like symptoms, which usually happens, so I wasn't too concerned. Then my stool started to become very soft, and after 2 weeks, watery diarrhea. Back to 2mg. Doc prescribed 5 days of antibiotic Cipro. Tests for parasites and bacteria negative. Stool better but not completely. About 10 days later I had lightheadedness and generally felt unwell, thirsty, around this time new anxiety/panic symptoms and very aware of heartbeat, even when lying down. I increased Pred to 2.5mg (after 1 day of 5mg), felt slightly better. Three weeks later I was feeling very dizzy one morning, took my blood pressure and it was very low for me, 100/65. Immediately increased pred to 4.5mg. Then a week later, in the morning, I felt very anxious and lightheaded. Blood pressure 166/95. Really high for me! My panic didn't help of course. Visit to ER. EKG normal; blood work normal.

Now it's about 3 weeks later. I'm doing better, blood pressure just now 118/75. My anxiety and panic, especially in the morning, has lessened. Saw my integrated medicine doctor, an MD, yesterday (for a few reasons I will no longer see my GP). He thinks my symptoms show that my adrenals are awakening, and that my reduction to 1.5mg has caused a setback that could take several weeks to stabilize. I told him I'd stay at 4.5mg for around 6 months and he agreed that I should. Who knows if my GI problems were related to Pred or PMR. I'm sure I wasn't absorbing much Pred.

I have no idea why I reduced to 1.5mg so quickly, so I really don't need anyone to explain to me why that was a bad idea! Hopefully I can prevent others from doing it with my story. I guess my main concern is the anxiety, wondering if I'll have to live with this for the duration of my PMR? It does seem better, but for me worse than dealing with stiffness and fatigue. I have seen a few posts from others with anxiety. Other than that I welcome any insight about these miserable few weeks!

Thanks!

[PMRpro Ambassador]

After just a few lines I was thinking: adrenal function lagging behind pred reduction! I wonder when doctors will realise that at the end is when you have to go even slower!!!

All the best from here!

[Heidi_SF in reply to PMRpro]

What's frustrating is that I knew that, only because of this site! Although thank goodness my integrated medicine doc knows it too, so I'll stick with him as my PMR doctor. The rheumy I started with told me to reduce by a full mg every 2 to 4 weeks once I was down to 6mg. He's long gone from my life, but I feel sorry for his PMR patients who follow his advice.

Thanks for the good wishes. And thank you for all I've learned from your very knowledgable brain! All the best to you.

[PMRpro Ambassador in reply to Heidi_SF]

What I don't get is that they all did the same level of physiology as me ...

[Heidi_SF in reply to PMRpro]

I went to art school and I know more about PMR than they do!

Sounds like the problem is even worse in the United States. My rheumy and GP both said I'd be on Pred for 9 months.

[PMRpro Ambassador in reply to Heidi_SF]

Good lord - what medical school did they go to!!!!

[carolBF in reply to PMRpro]

I find these posts very interesting

I am newish on here, can I ask how best to reduce/tapper off pred it looks like the last few mg must go very slowly, I went from 5mg (which took 10 months from 20mg) to nothing in 5 weeks and had a massive relapse.

Now back on 7mg and the pain is not under control yet, my hips are very weak and feel disjointed

Any advise well come

[PMRpro Ambassador in reply to carolBF]

WHY did you go from 5mg to zero in 5 weeks? No wonder you have problems.

At a guess it might help to try 10mg for a week - adding 5mg to where a flare happened is standard practice. Then try 7mg again, you won't have to taper.

The basic piece of information you were missing is: You are never tapering relentlessly to zero. You are tapering (as opposed to reducing) to find the lowest dose that manages your symptoms as well as your starting dose did. That will vary over your PMR/GCA journey and might end up after a year at 10mg or possibly, if you are lucky, at 5mg - PMR requires management with pred for a median duration of 5.9 years. This generally isn't a sprint - not a marathon always either but it is definitely middle distance.

Getting to 5mg in under a year was brilliant - but it may take even longer than that to get to zero successfully. Even 1mg/day can be enough to keep the inflammation under control and you symptom-free.

[carolBF in reply to PMRpro]

Thank you for your reply,

I am a person who really hates medication and believe most do more harm then good, I started to have muscle ruptures in my calfs every other day and couldn’t walk on 15mg so then thought it was a race to come off them,

Big mistake,

Can I ask how people build up some strength in their legs after a long relapse I fly to Australia on the 15th November but feel very weak but my hips burn after a small walk.

If I up my preds a little will I feel stronger?

Kind regards

X

[PMRpro Ambassador in reply to carolBF]

Slowly - training takes time. Do you know what you can manage with any repercussions?

I suggest to people they do a walk of x mins out and x mins back (half the total distance you know is fine) and rest the next day to see if they have muscle soreness. If not, add a minute out (so 2mins more in total) - keep repeating the rest day, exercise day until on the rest day you can feel it. Then stay at that distance for a couple of weeks and then reassess by increasing the distance slowly again. Once you have a decent distance you can work on speed. A guy on another forum could barely walk to the garden gate and needed a wheelchair for anything more but using that approach from Easter to September he was back cycling and skiing the following autumn/winter!

What do you mean by "hips burning"? Do you mean the thigh muscles? High up on the outer aspect of your thigh? Deep in the groin? Does it start after a distance and then wear off when you stop only to start again as soon as you walk again?

[carolBF in reply to PMRpro]

The hip burning starts after around 10 minutes of walking, ( i mean my hip joints are on fire) not my muscles I can walk for longer but have to rest

Xx

[PMRpro Ambassador in reply to carolBF]

Sounds like quite severe bursitis - and you need to discuss it with your doctors. If it were the muscles I'd suggest you need your blood flow to the legs checked. But this sounds like bursitis, it is an integral part of PMR. It often improves with higher doses of pred but returns as you reduce the dose. Sometimes if the PMR is active it requires local steroid injections in the region of the trochanteric or iliopsoas bursae - other causes may respond to physio and stretching but active PMR is another matter.

[carolBF in reply to PMRpro]

Thank you so much, I respect your reply’s, they always make sense

Kind regards

[yogabonnie in reply to Heidi_SF]

So sorry you are having all these bad docs. You do know more. Are you in San Francisco....is that what the SF is for? I agree the are behind in US.. although I am so very lucky with my doc. He has been spot on the whole time. BUT he is not a Rheumatologist. And he reads and listens to everything I repeat to him from this site. So NOW he really does know a lot. I am one month short of 2 years.. tapered from 15 to now 3 and will be VERY VERY CAREFUL from here on! Thanks for the reminder. Sorry it was at your expense!!

[Constance13 in reply to yogabonnie]

I've found my GP much more knowledgeable than my rheumy. Isn't that ridiculous?

[Heidi_SF in reply to yogabonnie]

Yes I'm in San Francisco.

Sounds like you're doing everything right. Good luck. Happy to remind people to slow down!

[Constance13 in reply to PMRpro]

Perhaps you 'listened' and didn't go out boozing so often!😂😂

[PMRpro Ambassador in reply to Constance13]

Probably!

[composition in reply to PMRpro]

I am thankful I see a rheumatologist and an endocrinologist on this journey and have from the start 1 year ago. I have gone from 20 to 12.5....had one setback early when decreased too quickly, but rheumatologist immediately took me back to 20 and then down very slowly. Hopefully, the endocrinologist will watch the adrenal issues closely. So far, the only issue is very weak thighs in the front, knee to thigh, cannot get off the floor without serious groaning, but I get the job done!

[Heidi_SF]

Right. This is when it becomes complicated. I've learned my lesson the hard way.

[SnazzyD]

Jeepers creepers. Same as PMRPro, thought immediately that you were getting the symptoms of adrenal insufficiency and debatably came close to a crisis. Also, I’d love to know why the GP prescribed a broad spectrum not particularly nice antibiotic for your diarrhoea. Did they know the organism?

Anyway, I reduced by 0.5mg slowly over 12-14 weeks at that stage and still got the horrible anxiety and mood changes plus a lesser version of your other symptoms including upset gut. It does go, but can take a long time so you cannot rush it. As my adrenals came back on line, all these symptoms went but for a while I thought I’d never feel well again and was a little bit miffed having gone through so much awfulness on high doses.

[Heidi_SF in reply to SnazzyD]

She phoned in the Cipro prior to the tests. Tests showed there was no bacteria.

Thanks for your story. Sometimes it's hard to believe this will ever end. Going forward I will reduce at a snails pace.

[PMRpro Ambassador in reply to Heidi_SF]

Cipro and pred is really not a good mix ...

[SnazzyD in reply to PMRpro]

Indeed and clobbering it with a broad spectrum antibiotic risks Clostridium difficile and it’s not supposed to be used routinely for diarrhoea. Anyway, it’s water (or something worse) under the bridge now.

[PMRpro Ambassador in reply to SnazzyD]

Now not supposed to be used routinely for any banal infection - to be kept for real proven need.

[SheffieldJane]

What your integrated doctor said to you is interesting to me, about the reduction to 1.5 causing an Adrenal setback that may last a few weeks, then agreeing to your plan to stay at 4.5 for 6 months. I find it heartening that your doctor at least seems to understand the intricacies of tapering and how individual we all are. Good luck with it and sometimes intuition is the best guide.

[Heidi_SF]

Thank you. I originally went to him for a different issue, so was pleasantly surprised that he's so knowledgable about PMR. When I saw him yesterday it was clear that he can be my PMR doc. I told him I was stressing about trying to get more Pred from my GP so he offered to order more for me. Huge relief!!

[Noosat in reply to Heidi_SF]

I was diagnosed with the PMR by my regular GP. When I asked if I should go to a rheumatologist he said that was my decision, and that he already had several patients with PMR. I decided to stay with him and am glad that I have done so.

[Heidi_SF]

Thank you for the information