Problems Agreeing Taper Plan

[strathearn]

Hello, I’m 81, male, and enjoying life (at the moment!!!) – this is my first Post on this excellent Forum. I had an appointment with my Rheumatologist yesterday and we failed to agree on a suggested taper plan for PMG. Before I go further, the following is a brief history of my GCA/PMR journey to date.

In October 2015 I started developing really bad headaches which developed into an unbearable painful condition which even strong painkillers could not adequately supress. I saw my GP and he took blood samples. The results came back next morning and by noon I was on 40mg pred for suspected GCA. Within a couple of days the headaches were gone and I felt great. I now realise that the GCA was possibly triggered by the stress of my wife being diagnosed with lung cancer and then the subsequent surgery to remove the tumour. I’m glad to say that she is fine now and also enjoying life!! The usual tests were carried out, biopsy was negative, and I was referred to a Rheumatologist who put me on the usual NHS taper plan. This went fairly well until I got down to around the 15mg mark when the muscles in my body started to be stiff and painful, especially in the morning. I controlled the pain with painkillers but by the time I got down to 7mg in February 2017 I was really suffering. I consulted the Rheumatologist and she thought I might have PMR and she raised the pred to 10mg. Blood tests were high. At around this time my lower back started hurting and my lower legs and feet felt numb. In March still felt bad so pred was raised to 15mg. Since then until the end of October the pred level has tapered up and down between 15mg and 7mg. Had MRI scan in September of lumber region which showed bulging discs – probably the cause of my sore lower legs and feet. Saw physio – doing exercises!! At end of October, really feeling very bad, and contacted the Rheumatologist again to suggest I raise the pred to 20mg and see what happens. She reluctantly agreed but said that I should taper very quickly down again. Needless to say, I felt immediate relief to the PMR symptoms but also a significant reduction in my back and feet pain – could be a masking affect (still waiting to see a Neurologist). No pain killers since then. In early November I attended the Roadshow at Kirkcaldy, Fife and discovered your excellent PMRGCAuk web site, and my life has changed. As I had an appointment to see the Rheumatologist on December 4th, I emailed her your website 2 weeks ago, together with some of the information regarding steroid surveys (the Matterson Report) and the importance of tapering slowly. I said that I was going to stay on 20mg for I month and then suggested I go to 19mg for 2 weeks, then 18.5mg for 2 weeks, then 18 for 2 weeks, etc. until I got to 15mg and then we could decide at that time how to proceed.

(I take 5mg at 2am and the balance with breakfast)

Yesterday she acknowledged receipt of my email but was obviously not very pleased that I was trying to have a greater say in any decisions related to prem and PMR in general. She kept emphasising the importance of steroid side effects, especially osteoporosis, (I agreed) but that I need to taper more quickly. I asked her if we could not work together on my plan and see what happens but she more or less said that I had made up my mind of how to proceed so there was no point in me coming back to her clinic. I thanked her for her help in the past and said I would send her an update email with how my plan was working. Her parting words were “I probably won’t reply”. I feel very sad as I thought we had a good relationship over the past 2 years. She’ll be sending a letter to my GP.

Do you think my taper plan sounds OK – it’s my body and I feel I should have a say. So, that’s my story and many, many thanks to all on the Forum for opening my eyes.

[DorsetLady PMRGCAuk volunteer]

Hi strathern,

Your tapering plan sounds eminently sensible to me, such a pity your Rheumy didn’t think so! Actually in the guidelines I believe is does say the tapering plan should be agreed with the patient- so she’s being a bit offhand, although some don’t like to be queried I guess. But as you rightly say, it’s your body!

I’ve said this before, but I do wonder why some doctors have this pathological aversion to Pred, yes we know it has side effects, but what drug doesn’t.

I’m sure your GCA was connected to your wife’s situation (many of us can relate to similar situations), but hopefully now she’s on the up your GCA/PMR will settle as well.

Good luck, and please keep us updated - it will be interesting to hear what your GP has to say.

[strathearn in reply to DorsetLady]

Thanks for your support. As you say, why do the Medical Profession have such an aversion to pred. There is plenty of recent information available which agrees that a slow taper is probably the way to go.

[PMRpro Ambassador in reply to DorsetLady]

I think you are thinking of using mtx as a steroid sparer - they say that should be a shared decision. Actually all care should be a shared decision and it is a bit point made in the OMERACT group.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hi,

This is what is stated in 2015 guidelines - not sure if it’s followed though -

(5) We recommend the initiation of low-dose corticosteroid therapy with a gradual taper in patients with straightforward PMR [10–14] (Level of evidence 2, Strength of recommendation B). Evidence for an ideal steroid regimen suitable for all patients with PMR is lacking. The suggested dosage regimen given below is based on the consensus decision of the working group. Additionally, as in other rheumatic diseases, patients with PMR show heterogeneity in their clinical and laboratory features, response to treatment, disease course and relapse rate. Therefore, flexibility is needed to tailor treatment to the individual patient, for the initial dose of corticosteroids, the tapering regimen and the duration of therapy. Therefore, the actual regimen required by an individual patient may differ to what is suggested subsequently.

In the absence of features of GCA, there is little indication for urgent corticosteroid prescription before the clinical evaluation is completed. We suggest the following regimen: .

Daily prednisolone 15mg for 3 weeks .

Then 12.5mg for 3 weeks .

Then 10mg for 4–6 weeks .

Followed by reduction by 1mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)

Some patients may benefit from a more gradual corticosteroid taper, or a period of treatment at a stable dose, such as 5mg prednisolone for 3 months.

The dose may also need adjustment, due to disease severity, comorbid factors (e.g. diabetes, cardiorespiratory or renal disease), fracture risk, patient wishes and adverse events.

Intramuscular methylprednisolone (i.m. depomedrone) may be used in milder cases and may reduce the risk of corticosteroid-related complications [15]. Initial dose is 120mg i.m. repeated at 3–4 weekly intervals. The dose is then reduced by 20mg every 2–3 months and given monthly (Grade A). Avoid NSAIDs, especially in the very elderly and in those with renal impairment.

Usually 1–2 years of steroid treatment is needed [4]. The need for ongoing therapy after 2 years of treatment should prompt the consideration of an alternative diagnosis, and referral for specialist evaluation.

[PMRpro Ambassador in reply to DorsetLady]

Exactly - but they rush at things like a bull in a china shop...

[strathearn in reply to DorsetLady]

I'll make sure my GP is aware of this when I meet with him - thaks.

[SheffieldJane]

Hi Strathearn, what a shame that your Rheumatologist couldn't be the bigger person and accompany you on this tapering journey. She may well have opened herself up to some real learning. Your tapering plan is far more likely to have long term permanent effect than trying somehow to power through the pain of your " still active" disease.

Are you protecting your bones with vit D and Calcium?

Have you had a DEXA scan for your bone density within the last 2 years?

Have the prescribed Alendronic Acid or similar?

The top two in particular are advisable. The AA would be a temporary measure following a concerning DEXA scan that showed accelerated damage. Please research it though. In my view it tends to be prescribed with not enough hard thinking.

As you will have gathered there is a lot of GCA expertise on here. DorsetLady has already given you the benefit or her advice. Stick with us for your taper. I don't doubt your trigger for these illnesses. A lot of us have a similar period of stress and worry prior to diagnosis. May your wife continue to enjoy good health.

Continuing to enjoy life will aid your recovery, and of course if you are from Fife you will be made of " iron girders".

[strathearn in reply to SheffieldJane]

Thanks for your comments and support.

Had DEXA scan about 2 years ago - will request GP to arrange another one to see if I need to continue with AA.

After reading one of the Posts, I recently upped Vit D to 2800 IU daily

Vit C is 400mg daily (I take Vit C & D 2 hours after pred at breakfast).

I take AA - 70mg on Sunday morning, meth - 15mg on Sunday evening and Folic Acid - 5mg on Wednesday morning.

Other daily pills are:-

Lansoprazole - 30mg before evening meal; Avodart - 0.5mg and Tamsulosin - 400micrograms - both for my water works (you lovely ladies don't need to worry about these pills!!!); Amitriptyline - 10mg at bedtime to help me sleeps (they work) and finally Omega 3 1000mg (recommended by Kate Gilbert at the recent Fife Roadshow).

My goodness - no wonder I'm rattling inside!!

[jinasc]

Follow this link pmr-gca-northeast.org.uk/as... and when you get there, go to page 4. Read it and you can download it.

You could add it to your next email to that Rheumatologist - maybe IF she reads it then perhaps she will realise that good research Rheumatologists listen to patients and then ..........................

I am also sure that PMR GCA Scotland will help you find other Rheumatologists.

[strathearn in reply to jinasc]

Thanks for the link - excellent site. I felt the same as John did when I was first on prem. However, I rushed out to the Golf Club and shot a great round - followed by more than a few drinks!!!! Hopefully my taper plan will work and any stiffness will be in the right place!!!

[PMRpro Ambassador in reply to jinasc]

Unfortunately in Scotland you do not have a legal right to choose who you see as you do in England. Though I imagine you can probably talk a good GP round...

[SnazzyD]

Hello, when I saw a Rheumy who kept on with the mantra, “must taper more quickly”, I pointed out that following my plan meant that I was still going down but had not had a flare and surely that was better than going too fast, having to go up again and ending up with more Pred in the long run. There was a bit of nondescript waffle before they went on about side effects, non of which I have so far, and going on these other drugs which are not exactly benign either. The Rheumy foretold more gloom and disaster yet said carry on as you are then as I left, feeling despondent and confused. Anyway, I am taking advantage of the NHS being overwhelmed so that my supposedly 3 month followup will be 11 months. Meanwhile I keep an eye on systemic problems like diabetes with my GP, keep my weight down with low/no carbs, take Vit D and some calcium, exercise and generally keep trucking. Do make sure you get that DEXA scan done because even if you do go on AA etc you still need a baseline.

I’m a GCA only person by the way since 8 months ago. Started briefly on 60mg and now on 12.5mg and realising my head is well above the parapet now.

[Rugger]

Hi strathearn,

I think you can tell that we DO think your taper plan sounds OK!

If you look at the pinned posts on the right, you'll see numerous different SLOW taper schedules in the 'Steroid Taper Web Application' - maybe a link to that website would be of interest (or not?!) to your Rheumatologist.

My Rheumatologist is Sarah Mackie, who is a patron of the PMRGCAuk charity and who is mentioned in the article that jinasc has sent you a link to. Sarah approves of the DSNS taper that I and other patients follow. I told my GP about it and although he hadn't come across it before, he thought it was a great idea. I am blessed to be under the care of such people.

I'm sure you will find a recommendation to another specialist. In the meantime, you and your GP can look after your immediate needs such as medication and tests etc.

Good to hear that in spite of all this, you and your wife are enjoying life. Long may you continue to do so.

Seasons greetings to you both and hope for a smoother journey in 2018.

Me: PMR 19 months, DSNS taper at 0.5mg per month to 7mg - hope to start 6.5mg in 4 days.

(Flared this summer when tapering at 1mg per month!)

[isabella2015]

Strathearn! Well done, you are in the right place!

[PMRpro Ambassador]

So where in Strathern are you? Have you also found the Scottish charity which is based in Dundee (at least originally!)

pmrandgca.org.uk/welcome

I struggle with doctors who think they know best without even listening to the patient. And even more so with rude ones.

The Dead Slow approach is being used in a clinical study by Prof SArah Mackie in Leeds who someone mentioned. If it is good enough for her - it should be good enough for anyone.

[strathearn in reply to PMRpro]

Just west of Crieff - a beautiful part of Perthshire. Have been to one of the Dundee local meetings and to the two Roadshows in Scotland this year. Thanks for your support and information.

[PMRpro Ambassador in reply to strathearn]

All of Perthshire is pretty good! I used to live in Meigle (just) Angus, next village to Coupar Angus (which is in Perthshire).