Just when you think it can't get any worse...pred taper abandoned, back to start line

Saw rheumy yesterday. An urgent referral after I hit problems with his taper plan which was a 15mg start in July, reducing by 2.5 every 2 weeks til down to 7mg, then you 1mga month to zero. Symptoms started to return at 10 and gave up after 10 days and returned to 12.5, intending to follow slower taper as suggested here. When I phoned rheumy nurse to seeif I could go to 15 she said I needed to see consultant hence visit.

Saw the same guy who diagnosed PMR in July 2018. Very attentive and he listened. Said I had a couple of slower taper plans and showed him what I intended. Said I was also struggling with fatigue beyond anything I'd ever experienced; worse over the last month to a point where I'd almost prefer pain. Said PMR pains 90%+ improved with pred, had responded immediately and I was delighted with improved mobility etc, but aware that as dose dropped, the flare type pain was lurking and returning. All bloods are normal and have been for at least 2 years (GP ran ESR and Crp and others when I first consulted with pain in 2016)

He looked at hands, said fine, took an arm and pressed inner elbow. I nearly went through the roof with pain. Same, but not as bad on other arm and similar in knees. Last week, I thought I'd pulled something carrying the coal bucket as my arm was sore in the evening, to a point where I couldn't straighten comfortably, but it improved and I'd forgotten about it and hadn't mentioned it to rheumy. He then floored me with his view that he believes I have fibromyalgia as well, plus (probably) chronic fatigue. I was speechless as this was totally unexpected. He wants me to take Alendronic, which I've declined, again. Plus amytripyilline or gabapentin for the FM and to improve sleep. Both declined.

As for the pred plan, he says it's going to be a long road. At least 2 or 3 years. I'm to go back to 15mg, reduce by 1mg every 2 weeks down to 7, then 1mg a month to zero. But, that may need to be slowed further at any point if symptoms return. Have to say my usual glass half full attitude has taken a bit of a battering. He reckons PMR and FM together isn't uncommon. But I didn't react to those pressure points in July, so don't understand how it's arisen now. It's all an unwelcome and unexpected setback and I share in the hope that anyone new to this path will understand how much it can change.

[jinasc]

That reduction plan is too fast.

I have sent you a PM.

[Mary63]

I think his suggestion is still too fast a taper for PMR. And if you had such good pain relief until you tapered too fast, that seems to count out the fibro. As for your fatigue, the ‘deathly’ fatigue many of us experience is common, and does not necessarily indicate chronic fatigue.

I for one have never mentioned my fatigue to any doctor, as I know from this forumand reading that it goes with the PMR territory. Interestingly I have never been ASKED about fatigue either. I wonder whether doctors realise PMRGCA sufferers do find the fatigue part of these illnesses very wearing? Can you get a second opinion?

[Hidden in reply to Mary63]

Thanks Mary. Tbh, at first consultation, half expected FM diagnosis. I'd never heard of PMR. I had no response at pressure points used for FM.

I thought I understood the fatigue; I've had it for well over 2 years, but it's suddenly worse. In the last three weeks, I've reached a point where I've found it difficult to function at all...get up, cook, bathe...that's not me.

Second opinion? I'd have to go privately. NHS consultant rheum post is currently vacant and has been for some months, so very limited NHS option. I did look a few months back and couldn't find anyone within 100 miles of home. I'll have another think on this, thanks.

[Sandradsn]

The taper plan he is suggesting is too fast,you'll be back to square one again.I've been there!.I just go by how I am at each taper,knowing my own body better than my previous GP! Don't reduce if you have pmr pain.

[Hidden in reply to Sandradsn]

Thanks Sandra and Hmm! I was slightly encouraged by his revised plan; longer and slower than original...I've gone back to 15mg today. Now my new day 1 and I'll see what happens if I drop 1mg after 2 weeks. I appreciate your comments; experience is all.

[Mary63 in reply to Hidden]

You need to get rid of all the inflammation which has built up, and from what I have heard 2 weeks at 15 mg probably won’t be enough to do that. 4 weeks should be better.

[PMRCanada in reply to Mary63]

When I flared I went back up to 15 for 5 weeks. Then began taper of 1.25 mg every 2 weeks with a transition week in between alternating old and new dose daily (15mg one day, 13.75mg next day and so one for a week). I didn’t have 1mg tablets so I was cutting 5mg into quarters.

I am now down to 11mg (now that I have 1mg tablets), and will transition down to 11/10 next week. Once at 10 I plan to stay there a month, followed by not more than 10% reduction.

My Rheumy thinks I have seronegative arthritis????? I also refused all meds except pred and calcium, vit D, and k

Sounds like resources are thin there. Hope you can get a handle on your taper, and finding more helpful medical support.

Hang in there, we’re here for you.

[Rimmy]

I agree with Mary63 - and as she suggests it might be worth getting another opinion !

Best wishes

Rimmy

[piglette]

As the others say the taper plan seems too fast to 7mg, he says PMR is long haul but his plan means you should be at zero in six months not 2 or 3 years, but it does seem your rheumie listens if you have pain problems, so he will probably be happy to have a slower one or you manage it yourself. See how it goes. I think they try it on to see how fast they can go as some people are able to reduce quite quickly, while others, like me, are precious flowers!

If you really do have FM and possibly chronic fatigue, by getting the PMR under control at least you can then see more clearly if you really do have other problems. Have you had a Dexascan to check your bone density? Have you been given vit D and calcium.

[Hidden in reply to piglette]

On the revised plan, I'd be at zero in around 18 months. That's from a 15mg start, reducing by 1mg every 2 weeks to 7 then 1mg every month to zero.

I think they basically don't know. There are guidelines, they follow in the first inst. but must, surely, know that there's a high fail rate. They've covered their base. He's intimated leeway and said its a fine balance between tapering and symptom control.

Yes, I have AdCal for D and calcium ( but I'm not taking every day. I've upped natural sources and there's a Vit D blood test done yesterday. Dexascan...on my list for yesterday. Forgot. Shows how fuddled my bloody grey cells are! So thrown my brain shut down and even forgot to ask the questions on my list. He dismissed Alendronic 'problems' as occurred in those on injection rather than oral.

[piglette in reply to Hidden]

I do wonder how many people some of these doctors have actually come across with PMR. I cannot believe that some of them have had that much experience.

[Suffererc in reply to Hidden]

What are the Alendronic problems please.

[Hidden in reply to Suffererc]

Hi suffererc. Alendronic Acid is recommended to allegedly combat the increased risk of osteoporosis in those taking steroids. However, it's got numerous side effects, well documented and people chose to not take it, or stop taking it.

If you put Alendronic Acid or bisphosphonates into the search at top right of page (or google it) you'll get an overview of the numerous issues around this med. I hope that helps.

[Rose54]

Hi

I can only agree with others far too fast a taper

I am 3 years into this journey and only just reducing to 7.5 and also aware I may have another 6 years or more to go .

If its any help I do have some tender points on body if I knock myself its really painful

Also fat lumps that are painful if touched but I feel its all do to with PMR

[Hidden in reply to Rose54]

Cheers Rose. I don't understand these FM points, but I know he did them last time, and yesterday response was painful. I've managed OA in various joints for +30 years, so I'm used to dealing with chronic pain and flares. This PMR scenario is a whole new and different ball park.

[Rose54 in reply to Hidden]

Google Fibromyalgia tender points it will give the position of them on your body if presure is applied to these it will be extremely painful

But as I say everything was painful on me until Preds

I had to fight for my diagnosing of PMR as GP told me I had CFS

I suffered for 3 years and thought I had FM

[Hidden in reply to Rose54]

Some similarity Rose; I thought I might have FM when first went to GP early 2016. She checked pressure points; no response. It took over 2 years to see consultant rheumy and when he did FM points in July, they were fine. But yesterday, they weren't. Which caught me totally offside. I asked why I've suddenly got FM and he said the two often go together. Cop out response number 6? Pass the salt please. I need a large pinch

[Rose54 in reply to Hidden]

Lets hope he's wrong and it is PMR

[Suffererc in reply to Rose54]

What is CFS please

[Hidden in reply to Suffererc]

Chronic Fatigue Syndrome

[Marilyn1959]

Agree with others. He set you up to fail!!! If he has two to three years expectation, which is a realistic starting point, why is he suggesting an unrealistic tapering plan?

It has taken me sixteen months to taper from 15mgs to 7.5mgs. No flares, but sometimes eight weeks on a dose as attempts to taper have sometimes failed. The only larger taper of 2.5mgs was 15mgs to 12.5mgs, but this took weeks using slow taper plan. From 12.5 it was 1mg reduction and from 10mgs 0.5mgs reduction.

I advise that you listen to your body to let you know when to taper and taper by small amounts. It may take longer, but is the surest way forward.

[Hidden in reply to Marilyn1959]

Thanks Marilyn. I'd guess he knows it's going to be longer and slower but has committed on paper to something more, shall we say, pragmatic. He's a locum. There's no consultant so in x months, if I have the misfortune to return, it'll be someone else. If I continue with steroids at all, I'm going to do it slowly. Currently I'm considering how fast I can come off them totally. I feel trapped in a downward spiral that's getting worse and I'm not sure I can deal with it.

[Marilyn1959 in reply to Hidden]

Hi Astralsurfer. It's only downward spiral because you were trying to taper too quickly so it went pear shaped. You sound confused since in one breath you say 'If I am going to continue with steroids at al I will do it slowly', yet in the next breath you say 'currently I am considering how fast I can come of them completely'.

Reading your profile you were diagnosed after two years. That is such a long time to have suffered. The pred gave you 90% improvement at your initial dose of 15mgs which must have been a huge relief.

You now know the consequences of reducing too quickly so, being devils advocate, why would you still be saying you want to come off pred quickly and completely?

A dose of 15mgs is OK. This is the recommended dose required to get the inflammation under control. Some people need more to start but 15mgs was doing its job for you. Why change what works?

I was on this dose for about 9 weeks to start with. I had hectic schedule including my first ever cruise and I was determined to enjoy it! I make my decisions re tapering so that I am as well and mobile as I can be to enjoy living (albeit in a slower lane

However to do this I had to accept PMR journey was going to be over an extended period.

I think once you accept this you will gain greater confidence and control over your journey, giving yourself the best option of 'living' as you progress through it. The first few months, once the euphoria of the wonder of pred wears off, is very definitely the hardest and scariest, but it does get easier as you gain greater unstanding of the disease, set yourself realistic short term goals, rest when you need to and only taper by small amounts. You can do it!!!!!

I was devastated firstly because pre diagnosis I thought I was heading for permanent paralysis, secondly because I had to take steroids long term in order to feel better, thirdly because whilst pain was hugely relieved mobility was still slow and laboured and I could no longer do all the things I could do in the past and finally the thought that things would get worse before they got better. Enough to make anyone feel depressed as well as having an in inability to cope.

This disease has many peaks and troughs. You just need to learn to be patient, make adjustments, develop realistic expectations, go with the flow (sleep when the fatigue hits you) and celebrate the positive.

Today I did a whole day gardening.! Fourteen months ago I was struggling to wipe my own bum or walk!

Go easy on yourself.

[Hidden in reply to Marilyn1959]

Marilyn, firstly thank you for being such generous with your time in writing such a detailed response. It's kind of you and, along with posts from others, filled with wise and constructive advice.

I'm not confused; I'm angry. The last few days have, so far, been the worst mentally. It seems every bit of progress gets knocked back. Rationally, I know that's not the case, but it's still a struggle. And I'm frustrated because I'm mentally strong generally and this response has taken me by surprise. I thought I'd accepted that the journey would be much longer and more tortuous than I'd first anticipated. But apparently I haven't! I just want to throw all meds away and not have to face another discussion about treatment plan with a so called medical professional.

I believe someone posted that dealing with PMR can be rather like bereavement, for a raft of reasons. And on reflection, I think that's right. There certainly seem to be similar stages and I know this will pass and things will improve.

The support and advice from so many strangers on a structured and informed forum is beyond belief and a lifeline for common sense and good practice. I don't know how I'd have managed thus far without it! Thank you again.

[PMRpro Ambassador]

He's still being a bit gung-ho with the reduction though isn't he? At least he admits it may have to be adjusted...

And really - why tell a patient they have PMR and fibro - and then throw in CFS for good measure? Fatigue with PMR can be all encompassing, you don't need to add in anything else!!!

[Hidden]

'...PMR, FM and CFS for good measure...?

Because they don't really have an effing clue. Or maybe my cynicism has surfaced.

[Louisa1840]

Go the cynicism I say! I am so glad I don't go near these so-called expert specialists. SOME of them may know what they're talking about BUT .......

My GP is wonderful she lets me plan my own taper but is there for me if I need her - there has never been a mention of a need to see a specialist.....

Read/buy Kate Gilbert's book PMR GCA A Survival Guide. Listen to the experts on this forum, we are all experiencing living with this condition.

Each of us with PMR is different but the bottom line is - if you are in pain then increase your pred - it's not the evil some make it out to be - it's your friend. Find the dose that manages your symptoms and then be patient about tapering. One day we will be free of this but in the meantime be patient and if we have to stay on a low dose for the rest of our lives so be it, no big deal.

[Hidden in reply to Louisa1840]

Thanks Louisa. First thing I did after diagnosis was buy the Kate Gilbert book, then I joined the forum. I realised fairly quickly that it's a complex condition and no way a one size fits all. I've placed reliance on advice given here and the helpline because I sense honesty based on experience and there are many scenarios I relate to.

GP doesn't fill me with confidence. It took 2 years to get a referral, no treatment for the pain throughout, so not much help. Rheumy won't be there long as he's a locum, but at least I got the pred. With his revised plan, if I continue with steroids, I'm going to slow it even further and battle with GP if necessary. I suspect she'll just write a scrip.

[Suffererc]

Can you just stop taking Alendronic Acid. I didn't want to have it in the first place and it gave me a few problems with my jaw. Dr said not to take for a couple of weeks then to restart. Jaw problem stopped when I stopped taking AA. Would like not to take any more now tho .

[Hidden in reply to Suffererc]

Really sorry, I can't advise on that. I'm not a medic and I'd recommend you speak to GP. Good luck.

[HeronNS in reply to Suffererc]

You can just stop taking it in the sense that you don't need to taper off it as you would pred, or an opioid for example. If you do stop taking it for what sound to me like good reasons (jaw problems) please know that a research study showed that nutrition and exercise can work just as well as medication for improving bone density.

hindawi.com/journals/jeph/2...

[Suffererc in reply to HeronNS]

Thank you and what you say makes sense. I get lots of exercise and my diet is good.

[Hidden]

Bummer.

[Mike1964]

Hi Astralsurfer50. Sorry you're having such a crappy time, I and I'm very sure all of us understand and feel your pain. Totally understand what you mean about the fatigue being worse than the pain, it really is so hard. I've had to learn/am learning! that quaint sounding thing called pacing. Boy does it suck!!!! I was brought up in a home where workaholism was the drug of choice, it didn't matter what/who you were as long as you worked hard. The realization that I can no longer spend X amount of hours gloriously cleaning and cooking and entertaining children is scary but the reality is I/you can't. Wishing you the very best, Mike.

[Hidden in reply to Mike1964]

Thanks Mike. You're right, the pacing is a real problem. I'm used to doing things; painting and decorating, gardening, cooking, chopping logs etc etc and lots of physical hobbies like cycling, walking, surfing. I just see jobs that need to be done and it's the mental block that's tricky. I'm going through an angry and frustrated phase I think. Keep reminding myself of all the wise words here and that so many have far more problems, but it's difficult to find the balance. Pulling a stretch band for a while doesn't have the same appeal! I really appreciate your comments, thank you.

[Mike1964 in reply to Hidden]

Lol, I think we may well be long lost brothers/sisters separated at birth! It is indeed a terrible thing to see a job that needs doing then not to have the uumph to do it. Things will get better and perhaps we will both learn more about ourselves? Boy has having to slow down and ask for help been a toughie, instead of just steaming ahead and "Doing" Actually having to ask my wife to help me prepare Sunday lunch has been a good thing, I think it's actually helped to make her feel needed. Was/am I too able for my own good?

[2roos]

Why is it that the Dr all suggest suck quick reductions? .5 mg works best for me I can do it every 7-10 days was at 9mg but seemed to not to do so well on 8.5 taking longer to adjust to this dosage. Keep at the slow decrease good luck

[Marilyn1959]

Hi Astralsurfer, how's it going today? Thought I'd check in with you.

[Hidden]

Thanks Marilyn. Honest answer; still near the bottom of the abyss, but crawling back. Tbh, the vagaries of drug intervention are nothing compared to the mental strength needed to deal with this disease. And I've always considered myself to be reasonably well balanced; the one to whom others turned, sometimes, for balance. But dealing with this condition(s) is calling in every reserve I have. A beast not to be underestimated! Thank you so much for asking.