I have not posted since joining back in September last year but keep looking at all the posts. Since being diagnosed (via a muscular and skeletal specialist) i have not seen a doctor only had 3 phone chats so tapering using this forum. What i would like to know is why people see Rheumatologists, not once has my doctor suggested it only that i need to get off the pred as soon as possible. Started on 15mg now down to 7mg although still have a lot of aches especially in bed and first thing in the morning but trying to push forward as hate being on the tablets.
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Fudgeted
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Thank you for your reply, i just thought a lot of people on the forum mentioned seeing Rheumatologists so just wanted to check if i should be asking to see one.
This is an international forum so people in the USA will see a rheumy because of the way their system works. People with GCA in the UK should be under a rheumy and n the past if you wanted to see one, most GPs would refer you. But these days - it has all changed.
There are currently very long waits for all referrals except possible cancer and historically about 75% of PMR cases have been managed in primary care with referral only for complex or atypical cases or where GCA is suspected. I suspect your GP labours under the delusion that PMR is only a short-term disorder and is gone in 2 years. It isn't and is unlikely to be.
As long as the underlying cause of PMR is active, you will need pred, and enough pred to manage the inflammation. If you go too low, the inflammation that is not combatted each day will build up and eventually you will be back where you started. Generally, if that happens it is more difficult to get the symptoms under control. PMR lasts as long as it lasts - and there is nothing that will reliably shorten that time.
There is no cure for autoimmune disease - managing it depends on controlling the symptoms as well as possible. In the UK at present the only approved medication is pred - which used carefully and well does a fairly good job. Unfortunately doctors are scared of it and don't understand how to use it well. If your GP forces you to taper the dose too soon or too fast your symptoms will flare. The only medication available to your GP is pred - if they would want to get other medication in the form of "steroid sparers" into play, they must refer you to a rheumatologist.
I can definitely attest to that. Four different doctors telling me to reduce/increase my dose of pred in the early stages, and then one lovely doctor taking me under her wing for continuity. Ended up not being able to control symptoms, like you say, and not being able to reduce below 17.5mg. Only then was I referred to a rheumy 💁
Wish I could give this response 10 stars. The one common theme I see repeated is people lowering their dose of Pred while having pain from same in an effort to be done with the disease and there is nothing further from the truth. Not doing themselves any favors doing this and it’s counter-productive. If there is anything we could do get this slammed into people’s heads to get them to stop trying to rush tapering, this would be it.
Totally agree. My GP said he wanted me off the steroids as quickly as possible so I tapered every 4 weeks, which was a mistake. I went back onto 5mgs (from 2) and am now doing things much more slowly.
I believe I'm correct in saying that patients are usually referred to a rheumatologist only if other issues are involved e.g. giant cell Arteritis and large vessel vasculitis or repeated flares.
Please heed the advice given earlier in this thread. Most of us were active and strangers to prescribed medication before PMR found us. Personally, the thought of needing steroids after I was diagnosed was hard to contemplate but easy to come to terms with when I understood what PMR was doing to my body.
I think it may depend on where you live: I was referred by the GP in November 2015. I then had appointments with the Rheumatology Department, at the local hospital, every six months or so.
However, since the pandemic, I have only had one telephone conversation with the department. I do see the rheumatology nurse when I have denosumab for osteoporosis, but she’s not anxious to discuss the PMR.
Yes, postcode may well come into it. If you have any concerns about your PMR it's the nurse's duty to discuss them with you. If you are ticking along nicely 🤞🏼- well done.
My GP referred me to a consultant after blood tests showed something was amiss and I had stiffness , horrendous pain etc . I was very pleased to be referred. In the end I paid to see a consultant privately as the wait was likely to be a long one, it was 3 months in the end . I saw a consultant twice as a private patient and now I am under someone in his team whom I see every 3/4 months .
Morning Fudgeted, I've never seen a Rheumy and for the last 2.5 years been happily managed by my GP. Surgery. They've never put me under any pressure to get off Pred ASAP. They are happy for me to self manage but are always there and happy to organise blood tests etc and answer questions when/if I have them. I am under an Orthopaedic Consultant at the moment but that is for something we don't think is related although there is a possibility it could be. The information and support from the members/users of this forum as well as the huge amount of information in the FAQ's is invaluable.
I too started on 15mgs and my GP said I needed to come off steroids as quickly as possible so I tapered every 4 weeks. I got down to 2mgs but my aches and pains got worse so I was put back on 5mgs and told to taper much more slowly, ie 1 mg every 8 weeks. Have now reduced to 4mgs for the last two weeks but pain seems to have returned soo I may have to up the dose again. I understand you to have to find your own lowest possible comfortable dose and maybe stick with it for a bit longer.
Your doctors obviously don't understand the nature of PMR - it isn't something you take a course of pred and taper off it. However slowly you taper, nothing will get you below that lowest effective dose until the underlying cause of the PMR has burned out and gone into remission. I wish I knew how we can get the message through!
Seems like you have a beter understanding than your doctor now. You will get lower, but only when the PMR activity dies down in its own good time. No point taking too little - then you have the downsides of pred and not the benefits. If you try again and have to stick at 5 or so for a while, that's actually pretty good! The yo-yoing makes it harder to taper, too, so patience is a virtue.
Thanks, taichikung i do spread my doses out as well, i take 5mg in the morning and then 2mg in the evening, although i take it earlier on in the evening so maybe i should try taking it about 9.00pm as you do.
Thanks all for the replies it is much appreciated and nice to know if you have a question there is always someone who can help.
I did the exact opposite. The Rheumy stated that inflammation builds during activity. Therefore evening is when most inflammation builds, once get up and move around it dissipates as blood flow is increased in the muscles. So I took about 75% of my daily dose around 7 - 8 pm and the remainder upon rising in the morning and I had no pain on waking. As the dosage was reduced over time that ratio dropped to 50:50 and finally a single full dose in the morning. The later when I went below 8 mg per day.
I've always thought the pain builds up as effect of pred wears off? I do much better now that I take pred at 2 am as it's getting to work just as the inflammation-causing cytokines are released before dawn. I've tried breakfast time again as I used to for years and it really doesn't work as effectively. Only on 2 mg now.
Well, it’s not the what comes first, the chicken or the egg. PMR manifests as pain, a result of an autoimmune response resulting in inflammation. Confirmation is assisted from elevated ESR & CpK results and process of elimination of other potential causes (yes, I know you know this).
The treatment is to give a Pred. It knocks down the inflammation, ESR & CpK decreases, and if Pred dose is sufficient, pain is alleviated (and I know you know this also).
Before I was rushed to the ER, days before when I’d attempt to get out of bed in the morning, I’d be stiff, had to take baby steps, and after each step the stiffness would go away such after walking about 12 feet I was fine. Each subsequent day, it’d be a little worse getting up and longer walk before ok. As days progressed, it got to the point if I sat still for more than 15 mins in early evening the stiffness and now some pain would return. After a week I was in the ER. 80 mg Pred and after overnight observation was given another 80mg dose, and released with a prescription of 60mg per day.
What caused all this? For 3 days in a row I was crawling around under my car making modifications to its suspension. Next day it started and I just attributed it to excessive work I wasn’t used to. Had it happen at the beginning of the water skiing season when the first day out I go at it too hard. Except this time instead of each subsequent day it getting better, it got worse.
So, the way it was explained to me, and made sense, was inactivity was the aggravator. When are you (me) most inactive? “After dinner when I begin watching movies and in bed sleeping.” So with that logic, he suggested the split & PM/AM ratio and it worked perfectly. It wasn’t until discovering this site did I really learn about PMR.
Figured did’t make sense to push the time of my dose back toward 3 am because until I’m below 7 mg per day my Adrenals are shutdown completely. So focus on what works best for controlling the symptoms. Until below 7 mg (probably closer to 3 mg) the Adrenals don’t start to wake up. If my memory is correct 7 mg Pred = 35 mg Cortisol well above normal Adrenal production and when the amount of Pred results in Cortisol levels less than normal and the Adrenals are starting to be tickled then it’s more important to take the Pred in the early morning with 3 am being the target. I used 8 am figuring it would be close enough.
I may be a little off on the biology, but not significantly so. If taking most of your dose works for you then that’s best, for you. But I thought I read where you said “…most of the pain.” Was gone, not all. In my case, I was pain free throughout except if my step took me below optimal dose, then had a flare. Intensity of said flare was much less after I went to very small steps, typically manifesting itself more like a twinge (pain 1-2/10) than prior flares which were noticeable pain.
Typically in PR the pain seems to improve during the day. The reason an evening dose prevents morning pain is because it is there and ready to act in the early morning when the inflammatory substances are shed in the body about 4am.
When on pred you mean? That is typical when you are a person for whom the antiinflammatory effect of pred doesn't last a full 24 hours and is helped by splitting the dose.
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