Hiandri update

Hi All,

Firstly, thanks for all the support and information over the past few weeks, there is a core of really dedicated people to this forum, and we all owe than a big thank you.

An update as brief as I can make it on my situation.

I have a good GP, but have also consulted a French GP at the Holistic Clinic to get his advice and lots of tests to check all bases, which proved interesting. I had no skin allergies and no food intolerance issues, which was good. The issues he did pick up, several, generally appear to be just outside the normal range but he said they all contribute to the inflammation problem I have, and that I am not controlling and processing fat well enough which is a compounding problem. They include the following- INSULIN 23.5mU/L (double normal 5 – 13). - HOMOCYSTEINE 17.4 umol/L (5 – 15 max). - THYROID FUNCTION T3, T4 OK but TSH 4.1mlU/L (0.3 – 4.0). - SERUM CORTISOL 700nmol/L (200 – 700nmol/L) - SERUM B12 300pmol/L said it needs to be 400. And a CANDIDA PATTERN a food yeast issue that is not right in my diet. We have avoided sugar where possible for ages.

For the above situation, he has prescribed daily – Red Yeast Rice 600mg tablets, building up to 4 tablets daily over 6 days, plus 2/150mg CoQ10 tablets. 1/200mg Selenium tablet for 3 weeks. A 1000mcg B12 injection once a week for 3 weeks. In addition to what the doctor has prescribed, I take 250mg of Magnesium Malate, 125mg of Calcium, an Aspirin and Apple Cider Vinegar in the mornings. I have completely changed my diet and would be now 90% organic and about 85% vegan, plus giving up the one glass of wine a night and going alcohol free. I need to lose about 7kg to reach my optimum weight.

I try to swim 400m most days plus do a light work out in the gym, once or twice a week, plus walking.

What is really interesting is my ESR result on 17 March was 16 mm/hr (0 – 25) so normal. My CRP result on 16 March was 6mg/L and on the 29 March was 10 mg/L , both of which I would consider low, based on comments I have read on this blog but my doctor calls 10mg/L high as it is above 5!

Both doctors advised me to take Prednisone, which you are aware I was trying hard to avoid, but after weighing up all the advice, reluctantly started on 15mg, which I take as one dose at lunch time. My first dose was on 1 April; within 2 hours I had a 30% improvement, 5 hours 60 – 70% improvement, which continued until I virtually reached 100% no aches and pains within say 10 hours. Had one of the best night’s sleep in a while, but about 4am I started to get slight aches in the upper arm muscles, about 20% of what it was. The fact I have had such a positive response, by what I have read, seems to confirm I do have PMR although the ESR and CRP results don’t seem that dramatic.

I return to my GP tomorrow, to bring her up to speed on the past 3 weeks, and plan my Pred over the next few months. Obviously, I would like to get down to at least 7.5mg as soon as possible, but do not want to make the mistake of tapering too quickly, so therefore would appreciate your advice on the following. What is the best time to take Pred, I’m taking it at lunchtime? Is it better to do one dose, which is easier, or spread it out over the day? I’m starting on 15mg, can I drop to 10mg quickly – what is your advice here? Bearing in mind all the information I have provided, what do you think is a sensible taping programme, timeframes & dose, for me to help avoid the obvious setbacks that do happen.

My son suggested I buy a Shakti Mat $69NZ, made in India- google shaktimat.co.nz I’m sure there is a uk site – looks interesting, you may find it beneficial and wish to look it up.

Hope I have not over done it again! But it all adds to the knowledge bank. Kind Regards John

14 Replies

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  • Hi John,

    Glad to hear you had a positive response to Pred.

    Won't address your reading etc, sure PMRpro will give her advice shortly, but as we always say on here CRP and ESR readings are not the be all and end all - many people never have raised numbers - the symptoms are the key.

    4am is around the time your body produces the cytokines- the little varmints that cause all the problems - so it's understabke that you felt some return of pain then.

    Most take a full dose in morning with/after breakfast, but others who find that doesn't last 24hrs find it easier to split it - 2/3rds am, 1/3rd bedtime - the bedtime dose should then get you through the 4am period. Others, if they wake up for other reasons, find taking the dose around 2am, so it has time to get into system again for the 4am onslaught! It's a matter of finding what's best for you.

    Keep up with the exercise, but gently, and allow your muscles to recover properly, they are much weaker due to the PMR than they were, and need to be treated as such.

    No, don't drop quickly to 10mg. Although the starting dose of 15mg may be slightly higher than you need on a day to day basis it's given to ensure it gets a grip of the inflammation, and you need to give it time to do that - at least a month I would say!

    Then, you need to reduce slowly enough to ensure you don't go past the actual level that you do need - that varies person to person, and on your circumstances.

    Many plans say drop by 2.5mg to 12.5mg, then again to 10mg staying at each dose for a least a month. Some can do that, some can't, and need to do it slower.

    Would suggest you stay at each dose for a month, some only stay for 2 weeks, but think there is more of a risk of a flare if you only stay that long. And don't reduce if you have any return of symptoms.

    The mantra to remember is "don't taper more than 10% of your current dose". At 15mg that's only 1.5mg not 2.5mg. Having said that, many men do find it easier to reduce than ladies.

    I think you need to get the figure of 7.5mg out of your head - you need to take the amount of Pred you need to control things - and if you're fixated on getting to that figure you are likely to push things too fast and too far!

    PMR is not like many illnesses, it doesn't have a set end date, it can last anything from 2 to 6 years, sometimes a lot longer, but average is around 4 years, so you have to get your head around that, and accept it. If it goes quicker then good, but it does it in its own time!

    Once I got to 10mg I reduced 1mg monthly until I got to about 6mg and then reduced by 0.5mg a month.

    Good luck - and employ a bit more of the Kiwi laid-back position rather than the can-do attitude for a while.

  • Hi DL, many thanks for your words of wisdom which will be heeded, just so you know your wonderful efforts are not paid lip service. John

  • You are best taking the pred as a single dose early in the morning - the optimum time to avoid early morning stiffness was identified in a study to be 2am - which allows enough time for the pred to be processed and be at its peak in the blood when the pro-inflammatory cytokines that do the damage are shed in the body at about 4.30am. If the antiinflammatory effect for you is too short (it varies from 12 to 36 hours) then you may benefit from taking say 2/3 in the morning and the rest later in the day. But first you have to try the single dose approach - it has always been quite adequate for me and many others.

    Whether you can drop quickly to 10mg is an unknown - maybe you need 11mg to manage the symptoms at present. No-one can tell. It is far more reasonable to get all the symptoms under control as far as they are going to be and then reduce slowly. I would say 1mg at a time - some doctors would say 2.5mg at a time. If 2.5mg works, fair enough. You have the problem not only of overshooting the dose you are looking for (the lowest dose that manages the symptoms as well as the starting dose did) but also whether your body protests loudly about the pred it is used to being taken away. Top experts say in tapering no reduction should be more than 10% of the current dose to reduce the likelihood of that. At 15mg that is only 1.5mg, by 10mg it is only 1mg. Hence my favouring of 1mg at a time. It isn't slow when it works.

    I started on 15mg for 2 weeks, dropped to 10mg - and all was fine. So was 5mg. But my body was steroid-naive and the doctor insisted on using a 6 week taper, 15/10/5. Within 6 hours of missing the first 5mg dose I was in a worse state than originally - and I never got the pain and stiffness under as good control again for about 4 years. Who knows why but allowing a flare by precipitate reduction often does result in difficulty getting things sorted again.

    I won't say anything about your holistic approach - except it never ceases to surprise me that people refuse to take (for example here) lovastatin, produced under carefully controlled and monitored conditions, but happily use red yeast rice which contains exactly the same substance and is NOT monitored in any way shape or form as it is a supplement and not subject to the same regulations.

  • Thanks PMRpro, really appreciate your input and comments, I'm thinking of doing 15 - 1 month, 12.5 - 1 month, 10 - 1 month, then dropping by 1 or 0.5 as DL suggests if all goes well. Kind Regards John

  • Just a quick question about gastro resistant pred - should this be taken in the morning or the evening given it takes longer to work?

  • I'm sure the average doctor would say it should still be taken in the morning and when I was taking it I did without any problems really.

    I suppose it all depends on how long the anti-inflammatory effect lasts for you. It lasts 12-36 hours depending on the person. Obviously if you are a 24 hour person it is still hanging on next morning so the delay doesn't really matter. The time it takes to work also varies from person to person and whether you take it with food or not - it will take longer if you take it with a meal than if you take it on an empty stomach - but it is said it can be from 5 to up to 7 or 8 hours in some patients. That suggests taking it in the middle of the evening would have it working by next morning but you might have to experiment a bit to find your personal ideal time.

    I take Lodotra/Rayos which is deliberately taken in the evening to release overnight so it minimises morning stiffness. It isn't available on the NHS in the UK and is much more expensive than other forms of pred. I discussed this with Prof Mackie and we suspect that you could use gastro-resistant pred in the same way, taking it in the evening so it is acting by the morning. She said there had been talk of a head-to-head trial of Lodotra and gastro-resistant but the drug company for Lodotra would play ball. I can't see it makes much difference to them as it isn't used in the UK and enteric coated isn't available anywhere else as far as I know.

  • Hi John, I am so sorry you have been diagnosed with PMR, but glad that the pred had a miracle effect.

    I do think you may be spending money on tablets that you do not need to if you have a good diet. For example one brazil nut contains enough selenium for a day's supply. Have you had a blood test for such things as B12, vit D, Folic Acid, potassium, calcium etc etc? As someone says what supplements give you is expensive pee. If you are taking calcium you need to take it with vitamin D to absorb it correctly. In fact vit D and calcium is probably the one supplement you should take with pred. Why are you taking aspirin?

  • Hi piglette, love your comments. Fortunately I am in a position I can afford the supplements that is not to say I'm silly about it. Will look into your comments further. Already take a Vit D capsule monthly, my test level was good. I read an excellent book many years ago on the benefits of taking aspirin and firmly believe it the overall protection it offers the body, if aspirin had just been discovered we would not be able to afford to buy it apparently. Thanks for the input , Regards John

  • Hi John, if you are taking pred you should take vit D and calcium daily to counteract possible pred side effects on bone density. The tablet is combined vit D and calcium, as you need the vit D to absorb the calcium. You should also be offered a Dexascan by your GP to check your bone density or have you had one?

    The only trouble with aspirin is that it can cause stomach bleeding.

  • The leaflet in with my prednisolone states to tell your doctor if you are taking aspirin. Pred is not kind on stomachs, John.

    Take care.

  • Thanks Rugger, taken on board. I had my doctors appointment yesterday and went over what I was taking including aspirin but she never mentioned an issue. Will raise it with her or just stop taking the aspirin. I have purchased the book about managing living with Pred. be interested to what they say in it. Cheers John

  • Low dose aspirin used to be recommended for GCA patients who had no contraindications but in the latest recommendations (no idea if they have been published yet) it has been decided there is no evidence it makes enough difference to justify the risk of gastric bleeding due to pred plus aspirin.

  • Hi PMRpro, thanks, I have had a slightly upset stomach over the last couple of days sine starting on Pred, i don't need to take the aspirin so to be on the conservative side will stop taking it. Thanks again, John

  • Hi piglette,

    Thanks for the reply and comments. Aspirin is CARTIA which is coated to help prevent stomach bleeding - have taken it daily for past 20 years. Will question. No, have not had a Dexascan, will see if I can organise one. I was taking 125mg daily of calcium for the reasons mentioned, but my doctor said to stop as it can cause a build up on artery walls and the main artery to my heart is blocked 50 - 69%, not enough for a stent yet! I take Vit D concerntrate capsule monthly.Regards John