Side effects when tapering

Thank you so much Eileen. I really appreciate your advice and support. 

I think that, however much we know and are told that there is no straight line curve for reductions, we are always at best disappointed and quite wrongly, at worst, feel we are to blame when it doesn't work like that.

I remember I got stuck on 10 for a while and my GP just said, " Stay there for three months" and then begin again, and that's what I had to do. I did get there in the end. Good luck. 

I have been tapering ever so slowly and carefully, like .5 mg a month, got down to 3 and 3.5 and am having many symptoms: stiff in legs and hips, my hands and fingers have become very stiff, and I did notice some gradual stiffness as I was tapering.  I had gotten down to 3mg. several months ago and had stiffness.  However, my usual syimptoms have always beguin with my arms and shoulder area, not so this time.  I started taking 5 in AM and lmg. at night.  Still stiff, especially this AM and my fingers and leg really pained me.  So I took 10mg. this AM, feel better, and am considering keeping it at ten for a short while. Any suggestions? (My MD had tole me several months tago that I'd probably always be on 5). Thanks, Elinor

Eileen could you advise me please.

I split my doses of prednisolone 7am and 3-4pm at present I'm on 10mg for the second time and my next reduction is due, I'm only doing 0.5 mg this time as I struggled to 10mg .

At the moment I take 9.5 am and 0.5 pm as I have weaned the pm one more recently as the most pain is in the morning.

What should be the next plan stop the afternoon 0.5 mg totally but I'm in pain by the time I get to 9pm or should I split am and pm dose more 2/3 1/3 as I originally did.

Good advice Eileen I have been down to 5mg for one week now so will continue on that for a few more months then feeling very good  very little pain now 

I have only ever taken my prednisone in the morning never at night time that's how my doctor prescribed mine . Yes pain is greater in the mornings as our bodies have been inactive . I have been on 10mg for six months now and just reduced to 5mg will now stay on for three months the pain is very minimal so hope I am going to be off this within 6 months that's my goal wish me luck .

Yes I do wish you luck, but I hope you do not cut to 5mg too fast, take it steady, as your adrenals will have gone on strike and need waking up steadily. They will complain if you do it too fast, and you might have to increase your steroids again, which would be a shame after doing so well.

I've been in a lot of pain since reducing from 14mg, but my consultant says reduce reduce so I am and getting stiffer and more pain, but until my ESR increases they don't want to know, to the point my next appointment is August!!!

So take care you are doing so well.

Hello Eileen..Ive been wondering if I am going too fast. Have had morning stiffness arms/legs for the last few months since coming down from 10mgs. Occ wrists too, some days quite marked. Am now going slow 8/7mgs. My CRP now only 1 (from 75  at diagnosis March 2016) so have thought inflammation must be improving. Am prepared to put up with some discomfort as have had some severe side effects from prednisolone.

Should I go back up till all stiffness gone despite my good CRP ?

Why is stiffness still there when CRP OK ? (I presume I am one of the lucky ones where CRP reflects state of play) 

I am more concerned by my Ecg changes and palpitations etc  I would love to know if anyone else notices heart rate changes? Even walking up stairs slowly causes rate of 90 bpm. 

Thanks to all as always

 

Thank you will not rush it the 5mg been a week and feel very good so far fingers are crossed 

Elijo:

If your doctor is happy with you at 5mg and you get symptoms of some sort at 3 - why are you trying to force things? The stiffness you experience there is very possibly due to adrenal insufficiency - muscle stiffness isn't common but it shows up in about 10% of patients with primary adrenal insufficiency, i.e. the sort you get because your adrenal glands aren't functioning correctly. 

If it were me I'd take the 5mg, enjoy feeling well and being able to dispense with the fiddling about of reducing - and the worry everyone attaches to it!

Clare:

The CRP can lag a long way behind any infammation starting up and in some patients it doesn't actually rise again as long as they are taking pred. The blood markers alone should not be the primary reason for what you do - although if they are starting to rise you shouldn't reduce any further and monitor their course. If they rise, even with no symptoms then it may be worth trying a slightly higher dose. On the other hand - if you have symptoms but the bloods are stable it is the symptoms that are most important, symptoms always win.

As I said to Elijo, stiffness CAN be due to adrenal insufficiency and that CAN start as soon as 10mg or even above as some people only absorb as little as half of the dose of pred they take. The "physiological dose" is said to be 7.5mg, that is the equivalent dose to what the body makes. But that is only a rough guide. It might be an idea to stay where you are for a couple of months and see if the stiffness improves.

Your heart rate increases in response to effort when your muscles need more oxygen to do what you are asking them. A pulse of 90 in response to climbing stairs is fine in the context of PMR - your muscles are still intolerant of exercise and aren't working properly, they'll demand more supplies!

I have atrial fibrillation - due to the autoimmune part of the PMR which damaged the electrical cells that govern heart rate. I have the opposite problem to you - I'm on betablockers and my heart rate doesn't rise when I walk up hill or upstairs. That's just as bad, if not worse! The doctors thought at first it was due to pred - but it had started about the same time as the PMR and I had it the entire 5 years I wasn't on pred. GP couldn't find anything - but half the time he'd not have found the nose on his face, he couldn't find PMR...

Hi Eileen could you look at my last post to you yesterday it's about 4 back from this one, I think I might have the answer to part of it, last night I didn't have the 0.5 mg woke up in a lot of pain and stiffness took 10 mg an hour later today felt a bit better so is it reasonable to split the 10 into 7.5 morning and 2.5 afternoon or would it be better 9mg AM and 1mg PM then shave the morning dose slowly I need to be at 9mg by 24th May for the Azathiazipine commencing as they think I'm at 9 but I was in too much pain so after the appointment went up to 11.5 mg so this is my second attempt at 10mg.

Thank you

If you take MORE in the pm you will probably have less pain in the morning, that's really why we often suggest 2/3 and 1/3. But everyone is different and some people do it the other way round, or half and half. You have to find what is best for you. and what least affects your sleep as well if that is a problem - it isn't for everyone. Obviously it isn't lasting 24 hours for you so taking it all last thing at night isn't going to be ideal but almost any other pattern probably will work.

It is worst in the morning not because we have been inactive but because the cytokines, the substances that cause the inflammation are shed in the body at about 4.30am. A study found that the optimum time to take pred to avoid morning stiffness was 2am - the pred is there, ready and waiting for them and they never get to cause the inflammation. Next best is to take them as soon as possible after 4.30am so they have done a minimum of damage. Or some people take some pred in the evening and it is still working next morning. Then they take the main dose at breakfast or whenever.

Just seen you last post - don't think there is much to add is there? 

You don't have to tell them you are still at 10mg - their idea is that the aza MAY help you reduce. It might - but then again, it mightn't. Which is more likely unfortunately. You have to be comfortable - it is pointless forcing a reduction and being unable to function - and they need to know that. Aza or no aza.

Thank you I see you answered me from yesterday as I was writing to you again this morning, so apologies for the last post.

i will try 8.5 and 1.5 after today. Thanhyou once again. 

No probs - I had a physio appointment so I'm late "getting to work"   

Hope it helps you, I just feel like a warm pool today and a sauna would be of real help. Before I go back to work tomorrow. 

 

It will - it is massage attacking the hard muscles in my back due to myofascial pain syndrome! The difference after just 2 sessions is noticeable  - and it finishes with 15-20 mins of a fango pack - a hot pack across the back. And although I have to pay some, it's a lot cheaper than going privately 

Does sound bliss at the end, so probably worth it to pay some as you say. 

Dear Eileen...thanks yet again, think I will stick around 7mgs for a while, take it more easy and let the weeds grow in my garden which I will find far more painful. interestingly, I suspect that I have had damage to Bundle Branch in heart from steroids/pmr, no idea which. I have always mentioned the 'thumping' in my heart but this is never considered a problem by Drs. I'm like the 'Boom boody Boom' song by Sophia Loren !  Trust you have a better GP by now...many of us think you should be wearing the white coat I suspect 

Eileen, do we know where or which cells produce the cytokines which cause PMR inflammation?

Elijo, I found my tapering really slowed down after 4 mg.  I've always paid attention to what my body was telling me, and the nice steady reduction which took place right through 4 and maybe even to 3 definitely wasn't possible any more.  It's taken me about nine months to get from 4 to 2.  My doctor, thankfully, told me she was happy with me at 4 and I think expected me to stay there longer but I was able to, v e r y slowly, keep on reducing.  

I now live in Italy and have a lovely GP - who, while occasionally a bit ditsy, is lovely and rheumy trained! 

Rethink the weed label - they are flowers that are growing where someone doesn't want them.  What you call weeds are amongst the joys of Alpine meadows, we are currently at the dandelion stage. 

"Cytokines are produced by a broad range of cells, including immune cells like macrophages, B lymphocytes, T lymphocytes and mast cells, as well as endothelial cells, fibroblasts, and various stromal cells; a given cytokine may be produced by more than one type of cell."

I think though it is probably the cells that have the IL-6 receptor that are more significant - and there isn't a simple straighforward answer!

"Interleukin (IL)-6 is produced at the site of inflammation and plays a key role in the acute phase response as defined by a variety of clinical and biological features such as the production of acute phase proteins. IL-6 in combination with its soluble receptor sIL-6Ra, dictates the transition from acute to chonic inflammation by changing the nature of leucocyte infiltrate (from polymorphonuclear neutrophils to monocyte/macrophages). In addition, IL-6 exerts stimulatory effects on T- and B-cells, thus favoring chronic inflammatory responses. Strategies targeting IL-6 and IL-6 signaling led to effective prevention and treatment of models of rheumatoid arthritis and other chronic inflammatory diseases. ...

... IL-6 has a dual effect; at some levels it acts as a defence mechanism but in chronic inflammation it is rather proinflammatory."

Thanks for your reply Anhaga.  Yes, I've very  s l o w l y  reduced to 3 or 3.5 twice in several months, and found I couldn't function properly.  So I will be happy to stay on 5 after I get through this bout.  I'm taking 10 in AM and i at night temporarilly then will reduce gradually to 5, .hopefully.  I'm glad you have a doctor who is happy with you at 4, and my GP said I would probably always be in 5.  He lets me do my own dosing, as he trusts my judgment.  Good luck to you.

Thanks Eileen.  You are absolutely  right.  Why not make life simple and accept the fact that I need 5 to function normally.  I'm taking 10 now temporarilly to get through then will reduce to 5 fairly gradually and STAY at 5.  Best healthy wishes to you, the leader of the pack!

Elijo, at least we are now at levels which have very reduced risk of significant side effects.  I now understand that the "nearly stop" part of the tapering program is just as important as the "dead slow".   It is possible, I suppose, that after a few months stopped at 5 you'll be able to gently nudge down .5 again.  And nearly stop at 4.5 for a while.  

Funny that.  I've been craving fresh green leaves (satisfied by trip to market) but asked hubby if there were any dandelion leaves fit to be picked yet. No. Never thought I would be seeking them!  Understand the early settlers considered them a good spring tonic. 

So there's no particular organ producing them?  Just cells floating around in our blood?

We warriers are also hoping to make it better!  I was naive enough several months ago o think I no longer had PMR (what a joke) until it came back at 3.5!  Now I am more realistic! So be it!

Something like that - blame your immune system. Which is an awful lot more complicated than most people have any concept of!

Good advice on 7.5 as of today will stay there for a few months then back to 5 mg love this forum great support system everyone 

We can blame those Italians for bringing ground elder to GB in Roman times..I filled a dustbin with it today !  Am a keen Alpine gardener...clay pots everywhere...not a dandelion in site. We are smothered in Bluebells now though.

 

I was interested to learn that osteoclasts are part of immune system - which makes drugs which damage them even more problematic (especially denosumab).

Our garden in Durham had a wonderful crop of ground elder - the previous incumbents obviously did not know how pernicious it is! I sat on the lawn and painted weedkiller onto the leaves and used spray for the stuff in the borders. By the time we moved there was none to be seen!   

Story of my life - buy a house, identify the skeletons, exorcise said skeletons and then sell a perfectly acceptable house. Start over again...

Don't think they think of that sort of aspect at any point. It's no wonder there is an explosion of autoimmune disease in the world is there?

Food for thought:

"Osteopenia and periarticular bony erosion are consequences of chronic inflammatory autoimmune disease due to an imbalance of osteoclast activity relative to new bone formation."

I wonder???? Q: Why are steroids used? A: For chronic inflammation. So - maybe it ISN'T the pred...

Hi Eileen,

is it possible for you to share the name of the Consultant so that if I have any resistance from local medics I can be specific as to where the advice regarding tapering is coming from?

Thanks.

Jane

The one who keeps his patients at 5mg for months you mean? His name is Rod Hughes and he practises at the NHS hospital in Chertsey as well as doing private work - he is closely involved with the local PMRGCA support group as well and there are several patients on another forum who go to him. Which is how we all learn about his approaches.

Ground elder - what we call goutweed.  People used to plant it as an ornamental ground cover.  It infests our entire neighbourhood, although so far our particular patch is confined to an uncultivated wooded bank at the back of the property.