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PMRGCAuk
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Is anyone else atypical ?

Are there many others like me who had to start on high doses of prednisone and stay on a relatively high dose ? I got diagnosed in October 2018 ( although I think I've had PMR for over a year) and it took 30 mg before I felt better . I've been tapering Dorset Lady way ( thank you!) and got to 22.5 mg with a few aches and pains returning . I saw a rheumatologist mid December who insisted I taper 2.5 mg every two weeks so I ignored him. 😱. I've managed to get to 19mg but feel I've reach my brick wall of pain and fatigue , and tbh I'd be much more comfortable on 22.5 mg again. Are there others like me? I've been checked for ankylosing spondylitis and tested for myositis and myopathy because my creatine kinase was ' moderately elevated' , although the sample was taken as an afterthought by my GP whilst I was already on 30mg prednisone . My rheumatologist has talked about prescribing Methotrexate or Leflunomide if I haven't managed to reduce my steroids sufficiently ( which I haven't ) . I see him Tuesday . Any thoughts or advice , please ?

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Hi Katie

Don’t know that you are that unusual - it does seem that some need more Pred than others - maybe you are one of those patients who don’t get the full benefit of the dose you are on. Or are you trying to do too much now that (generally) you feel better?

As for Rheumy pushing you to reduce more quickly - you are only 4 months in - think he’s being a bit premature.

Personally I think adding another drug in after only 4 months is too soon - it’s not as if you haven’t reduced at all - but that just my opinion.

I suppose you could trial it for a month and see if it helps- but it means more side effects - do you really want that? Works for some not others - but I was never on it so can’t advise- sure others will.

Your Rheumy may not think you’ve reduced sufficiently- but if you need 22.5mg to feel okay, then you need 22.5mg! Won’t always be like that, but at the moment it is!

Good luck on Tuesday.

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Thanks for replying so quickly . It's my GP and rheumy who think I'm unusual in needing high levels of prednisone - I wouldn't know ..... I'll pass on your thoughts on Methotrexate. Thank you .

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Hi. I started on 30 in September 18, and tried to reduce to 20 but had to go back up to 25 for 2 months and struggled then to get to 22.5. I did manage to get to 21 without much difficulty just after Christmas. I think the disease itself is still strong for first while anyway.

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So are you still on 21 or have you managed to reduce further ? Thanks for answering .

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I have managed to reduce further but oscillating!

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So what are you on now ?

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I don't recommend what I am doing to anyone else. I change each day which is not advised. I go down but up again in the hope that steroid withdrawal is neutralised. So at the moment the variation is 1.5 mg. I was aiming to meet targets initially and hoping to be 15 by end of month and stable there but I find that I have stopped planning and take an increase as I feel.

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Thanks for replying - it sound like we're at similar stages of the disease . Good luck with your journey !

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You maybe one of those patients who doesn’t absorb all your dose. I think PMRPro said that some people absorb as little as 50%.. ( get a pill cutter) and try to reduce periodically by 0.5 mgs. I hope you are not bullied about this, it really is pointless suffering and it achieves nothing. I sort of slipped under the medical radar for a bit, so that I could do my own slow taper. Nobody reduced my prescription. It took 33 months to get to 6 mgs from 20 mgs. I did have a life though. No ill effects.

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Thanks .for replying . I'll dig my heels in - I'm struggling on 19 mg so no way am I reducing any more ATM .

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If your CPK was mildly elevated on 30mg pred I'd wonder whether this is PMR - or at least "just" PMR. But in the context of PMR, has anyone considered you might have large vessel vasculitis because that is one reason for needing more pred?

academic.oup.com/rheumatolo...

The most recent guidelies

rheumatology.org/Portals/0/...

do suggest a starting dose in the range 12.5 to 25 - mentioning 30mg too though saying not above 30 - so you aren't that far outside their range (Recommendation 3) and 4 months is very early days - if you have pretty active underlying autoimmune disease then you will need more pred and I'd say needing 20mg at 4 months isn't that unusual when the entire PMR population is considered.

Was your thyroid function tested at the start as a rule-out? There are other causes of raised CPK and some have similar symptoms to PMR. Are you on any other medications?

ncbi.nlm.nih.gov/pmc/articl...

It might be worth trying methotrexate or leflunomide - but they have their own downsides and I refuse to believe it is worth adding more side effects for relatively little benefit. Some people don't have side effects, others do (I did with methotrexate and really couldn't face waiting to see if it reduced the pred). They work for some people and not for others - there are no guarantees.

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Thank you for replying with so much information and thank you for the links . On 30 mgs prednisone my creatine kinase level was 410 u/L - whatever that means! I'm not on any other drugs apart from tramadol . They did test my thyroid and that is normal . I had an Electromyography and Nerve Conduction test last week and at the time the neurologist said it was a bit inconclusive but I probably have PMR . No one has suggested large vessel vasculitis so I'll mention that to my rheumy on Tuesday .

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Upper end of normal range of CPK is 200u/l so that was pretty high for someone on pred - pred is used for some muscle problems that lead to raised CPK.

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The neurologist said that the only way he could confirm PMR or myositis or myopathy is to take me off the prednisone completely . I couldn't face that ! Makes me wonder what my CPK levels were before I was on prednisone......

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I'm definitely atypical. Here's a bit of my story...

....I was started on 20 mg of prednisone on March 11, 2014 and saw some relief, but not the 70% expected. It was upped to 25 mg on March 14 and 3 days I had a total melt down. I couldn’t get in an out of a chair, sleep, stand, get dressed, or do anything without pain. I remember not being able to lift a single dinner plate up into the cupboard. My upper back, neck and shoulders were so painful and weak I could barely hold my head up. My Nurse Practitioner, in consultation with an Internist, increased prednisone to 40 mg. Within 12 hours I had almost no pain. That night I slept in my bed for the first time in weeks and woke up pain free!

I was on cloud nine with 40 mg. My legs were normal again after more than 7 years of pain and discomfort (later deemed to be the start of PMR) and I had energy to burn. Life was great!! I was advised to drop 5 mg every 2 weeks until I got to 15. I didn’t make it passed 25. All the pain returned little by little. I tried to inch back up without any luck. I ended back at 40 mg again for a month and although most of the pain disappeared, my cement legs returned.

Almost five years later and my legs are still an issue. Sometimes worse than ever. Nonetheless I’ve been following a much slow taper since May of 2014 using the no more than 10% rule. I used Dorset Lady's reduction until I got to about 17 mg, and from that point on it's been the DSNS plan with only .5 mg drops. I have to stay at each dose for at least 4 weeks and have yet to get successfully below 10 mg. I suspect that I'm not absorbing, and never have absorbed, the full amount of prednisone.

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Thank you for sharing your story. I'm so sorry that you've had such a dreadful time! Have you ever been offered or taken Methotrexate? My rheumy is thinking about putting me on it .

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Yes, I was offered Methotrexate around the one year mark and nearly every doctor i see makes mention of it. I've made a personal choice based on the reading I've done. Basically, I'm not prepared to take another medication with very similar side effects and questionable results.

The journey has been longer than I expected, but I've adjusted well to my new life. with PMR and enjoy it to the fullest within my new limits. I've learned to read my body pretty well and when I run into difficulties it's usually because I haven't listen to what it's been telling me.

Best of luck to you in finding your path katiemills.

Oh, I should also mention I've also been offered bone sparing medication, anti-depressants and sleeping pills along the way. The only one I accepted for a short time was a sleeping pill to help me sleep while I was on a high dose of prednisone. I only took them for about 6 weeks.

My bone density has remained the same so no need for born sparing medication. Based on all I've read, I doubt I would take anything even if I got a diagnosis of osteoporosis.

As for an anti-depressant, it's a non-starter.

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Interesting that you were offered Methotrexate after a year, not 4 months like me . that's something I'll mention to the rheumy tomorrow. Dorset lady said she thought 4 months was pretty soon . Thank you for getting back to me and good luck with your reduction plan .

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My GP would definitely call me atypical on many fronts but joking aside, I didn't get relief when diagnosed until I was given 60mg pred. Took ages to come down slowly and managed to get to 8. After two small-ish flares, each time going back to 15 and tapering again, I had the mother of all flares and had to go back up to 30. My GP goes by my feedback on the pain as he reckons no two patients are alike on this journey with different absorption levels of pred, different strengths of PMR and the other commonly associated problems such as fibro etc. It's your body and you know how much you hurt so be persistent in getting the treatment you need. Both DL and PMRpro have taught me the damage caused by uncontrolled inflammation far outweighs the so called damage of pred. Good luck x

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Thanks for writing. Sound like you have a good GP. How long have you had PMR ? What's your level of prednisone now ? Do you take Methotrexate? Sorry to bombard you with questions.......

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My rheumatologist wrote to my GP saying I was atypical, goodness knows why. As my GP never read the letter as far as I could see I still don’t know! No one has tried to offer me a DMARD thank goodness although one GP is very keen I should have a bisphosphonate even though I have an excellent bone density. Some people do seem to be helped by DMARDs so I suppose it is really how you feel about them.

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Thanks for replying. Did you have to have a high dose of Pred to start with?

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I started at 20mg

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Methotrexate takes about 3 months to see the benefits.

Good Luck

Lin

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Thank you .

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