New Kid on the Block!

Just joined the group (male, 62) and so very nice to know I am not alone in this 'challenge'. My heart goes out to those who have been coping with this for a long time.

I self-diagnosed (Saga mag article) after 8 weeks of pain/debility, doctor wasn't convinced but put me on 20mg pred (seems low??) which kicked in after a week, had 2 good weeks and improved inflamatories, but relapse week 4 (last week - after flu jab??) so doc has said I can go up to 30 - or even 40 if not improving.

So, any general advice from you wise and experienced ones is always welcome (e.g. lots of tingling at the moment - is that a warning of possible complications coming or just returning feelings from inflamed bits?).

16 Replies

  • Hello there, sorry you had to find us as this is the club no one wants to join!

    20mg Pred is the usual starter dose for PMR so your doctor was on the ball there. Interesting that s/he's given you free rein with the dose - you need to remember that the higher you go, the more side effects can happen, and it will of course take longer to reduce.

    The tingling feeling is probably down to the Pred and many patients feel that flu, or the flu jab, triggered PMR or caused flares so you are not alone in that. You do have one thing in your favour, your gender. Fewer men are diagnosed with PMR than women and they do seem to have a much smoother ride with it. Hope this goes for you!

    It seems from your post that you had raised inflammation markers to begin with and if that is the case you should have a good guide as to when to reduce the steroids. Do ensure that you are well monitored and hopefully the blood test results will help with the reducing.

  • many thanks.

  • Hello soton and a big welcome to the group although we're always sorry to hear of yet another new member!

    Quite a few people on the PMR forums are mentioning flares in their symptoms at the moment following their flu jab. My rheumy is of the opinion that the flu jab may cause a flare, depending on the patient's vulnerability, and, of course, you will be quite vulnerable at the moment due to the lowering effect of the high dose steroids on your immune system. Hopefully your symptoms will settle again in a short while but, if not, then it might be wise to get your ESR and CRP blood tests repeated - as you are still on your starting dose of 20mg, it might be wise to do that to see if the inflammatory markers have increased before increasing the dose.

    As polkadot has said, we often find that men seem to have smoother paths to recovery, so some positive news for you. Lots of good luck wishes.

  • Thanks for reply. I have gone up to 30mg but will not go further. It's mainly left hip and groin that is paining and making walking a challenge. Should I try to rest legs or take pain killers and walk through it do you think??

  • Soton - it would be wise not to just "walk through it" until the symptoms settle which could take a few days. If you try to overdo things then it won't give the increased dose a chance to do its job of controlling the inflammation. Once settled you'll find you'll gradually be able to increase your walking time again. After advising you to increase your dose, I hope your GP has suggested you return after a week or so to have your blood tests repeated.

  • Thank you Celtic - I'll resist the 'man' thing and try to take it easy - but have been battling to get mother-in-law into a care home this week so lots to do! Yes, got another blood test next Tuesday, so if inflammatories down can I think of reducing dose?

  • Don't reduce just because your "acute phase reactants" look OK - it's the symptoms that are more important. And battling with any authorities is likely to cause havoc! Last week I spent one morning on the phone to my bank's call centre trying to get in contact with my branch to transfer money to buy a flat and the following morning with their insurance call centre to insure said flat in view of the forecast bad weather! Nightmare - but both mornings I felt sick, had a mega headache and generally PMR-ish plus. The next day - I felt fine. It was the stress doing it.

    The symptoms of hip and thigh pain you describe sound very reminiscent of trochanteric bursitis - increasing your pred to try to deal with it quickly is too simplistic. I had that at the start of PMR, it got worse and walking and even standing was very painful - I did wonder at one point whether it was osteoarthritis and did I need a new hip! Any exercise that involves movement of that area makes the inflammation worse so walking through it won't work, it will make it more painful. "Walking through it" will work to some extent for claudication pain and is recommended for peripheral vascular disease patients - this isn't that. Mine did improve after several months and suddenly I realised that it had gone. It returned last year during a mega flare and I had cortisone injections into the bursa itself which worked wonderfully.

    If you need to go up to 30mg to deal with pain - it almost certainly ISN'T PMR. There are other things that cause pain when you have PMR you know - we aren't immune from other problems ;-) nice though it would be.

  • thank you - will progress these thoughts.

  • Yes, soton, if your blood test markers are down next week and your symptoms have improved then you should be able to try reducing, perhaps not straight back down to 20mg though but to 25 - that way it is easier to judge at which point the inflammation might still be simmering. However, it is always preferable to give yourself a quiet week following a reduction to give your body a chance to adapt to the lower dose, so hope mother-in-law is settled by then.

  • hi - as I find your comments so helpful can I ask a couple more questions please? Is there a sheet listing the usual dosages of pred and the medication types and amounts to counteract the pred. e.g use of alendronic acid and antacid? Looks like there is no 'usual' reduction plan for pred, but how do these others medications normally reduce as pred is reduced?

    And presumably there is no local group around Hampshire?

    I appreciate your time given to this really helpful group.

  • Sadly, soton60pm PMR/Pred/others just don't work like that. At the moment there just cannot be a 'one size fits all' reduction plan because it is so individual. Not only are the PMR symptoms individual to each patient, but also their reaction to Pred and anything else they may be prescribed.

    As far as AA is concerned, have you checked this out? Have you been told it is necessary? You really need a baseline bone density (DEXA) scan before you begin AA simply to judge whether it is a necessity. Bluntly, if it isn't necessary, don't take it. The medics are doing their usual locking of the stable door after the horse has bolted with the cart and whereas in the beginning it was sold to them as an osteoporosis preventer, their thinking has now changed. It's now agreed that it should be taken for no more than 5 years which can leave some of those on long-term steroids with nowhere to go at the end of the 5 years.

    You mention an 'antacid' so have you been put on omezaprole or lansoprazole? These are PPI's (proton pump inhibitors) which work by preventing the stomach from producing or over-producing acids. Again the thinking has changed there - if they aren't needed then why take them? Although there has been a somewhat high incidence of patients with stomach problems taking high-dose steroids, many patients find taking the prednisolone with food is all that it necessary, and even more have found it helpful to have a yoghourt for breakfast or just before taking the pred.

    As for the support group, I rather think you are between us here in West Sussex, or the Somerset group. We here in the darkest reaches of Sussex are having a support group meeting towards the end of the month. Let me know if you would like details.

  • Please can you tell me the phone no. for the West Sussex support group and where about it is as I did not realize there was one. Kind regards - Healthhopes

  • Hello again soton

    Just to follow on from the good advice that polkadot has given, if my experience is anything to go, and if you haven't previously been diagnised with thinning bones or experienced any previous gastric problems, you may not need either the Alendronic Acid or the Antacid.

    I had a DEXA scan at the outset of treatment which showed normal bone density so didn't have a need for AA drugs, and in spite of a high steroid starting dose of 40mgs, my bones only showed the slightest deterioration after 5.5 years of treatment (not into the osteoporosis stage), which is probably due to Anno Domini now anyway!

    With regard to the Proton Pump Inhibitor stomach medications ("antacids"), I was prescribed Omeprazole which actually had a bad effect on my stomach! I was switched to Lansoprazole which caused pain not experienced before. At my first rheumy appointment I mentioned this and his reply was not to take any of them. I stressed my concern about not wishing to have a burnt out stomach from the steroids and he said he'd never seen a case of that yet. So the only form of stomach protection I had was a 'live' yoghurt each morning on my muesli or porridge, plus a teaspoonful of Manuka honey before taking the steroids, and never had a problem.

    One important blood test to have is one to check your Vitamin D levels. Many of us have been found to be deficient and such deficiency can lead to similar painful areas as those of PMR, as well as other nasties. If your levels are found to be low, a 3-month course of high dose Vit D supplement will restore it to within normal range. One benefit of taking such a supplement if needed is that more calcium will be absorbed into your bones from your diet, thereby helping to offset any possible steroid-induced bone loss.

    Whereabouts in Hampshire are you? We have a support group that meets in Surrey and several members come from various parts of Hampshire. For a list of all support groups, click on the PMRGCA logo at the top right of this page and it will give you the website, once within that click on Support or Resources.

  • Once again thanks. Omeprazole- I took one dose a while ago for something else and WOW. No noticable probs with Lans but will probably try honey/yoghurt approach I think.

    With the AA, would you be happy for me to say to the GP 'the support group says.....'?

    As you might have guessed I live in Southampton!

  • Hello again soton

    In reply to your AA query, GPs probably prefer to see something in writing from a reliable source. If you go to the PMRGCAuk website you can download the BSR Guildelines for the Management of PMR. You will see that under item 6 they state:

    "Individuals with high fracture risk, eg aged 65+ years or prior fragility fracture: Bisophosphonate with calcium and vitamin D supplementation - DEXA not required.

    Other individuals: Calcium and vitamin D supplementation when starting steroid therapy - DEXA scan recommended.

    A bone-sparing agent may be indicated if T score is -1.5 or lower.

    Individuals requiring high initial steroid dose: Bisphosphonate with calcium and vitamin D supplementation (because likely to have higher cumulative steroid dose)."

    So bearing in mind that you are under 65 and presumably haven't suffered a prior fracture(?), you would appear to fall into the middle option "Other individuals". Also with a diagnosis of PMR, you should not be requiring very high steroid doses above 15-20mgs (starting dose can also be dependent on weight).

    It is a personal decision for each of us, but with the latest information circulating about AA and the recommendation that it should be discontinued after 5 years because of the risk of jaw necrosis etc, I am relieved that I, for one, (and there are others) never took it - and it has now been proved I never needed it in spite of a high steroid starting dose of 40mgs. Once in your system it stays there for many years even after discontinuing it. So wise to have a DEXA scan, and good luck with the results.

  • brilliant -thanks

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