I'd love to hear people's experiences of how best to lower sterois?

[janimaths]

Great to read your questions and answers. I want to ask if anyone can tell me how long to remain on a dose of steroid before lowering it. I've got into a guddle with having a flare up, feeling bad, and could scarcely use my arms, GP said go up again, went up 2 mgs, seem to be getting a bit better, now hoping not to stay up here as I am potentially 'losing' 2 months at the other end. And if any of you English ladies want rain - come up to the West of Scotland - loads to spare and the midges are plentiful and free.

[Hidden]

Hi Jan,

Before answering your latest question, I went back into our website to your original inquiries. You mentioned your liking for sugary foods I guess all must of us feel like that, so can sympathise there. I'll tell you this as it might help. Since I have had this illness I have craved for sugar less and less, to the extent that I no longer even want to eat fruit. It's as though my brain is telling me that any sugar that I eat is trouble. I eat quite a lot of carbs. but mostly unrefined. I use Canderel to sweeten my tea and the plain yoghurt that I enjoy so much. Controversy there I know. Recently I went online and looked up the damaging effects of sugar to our bodies. The message is that refined sugar excelerates ageing in healthy people. Think of the effects it can have on folks with PMRGCA. Combine the effect of sugar with Pred. As far as I'm concerned, it doesn't bear thinking about.

Now lets get to your latest question. This is my way of dealing with it. I only do a drop in Pred. when my body feels easy. Resently I dropped from 7.5mg to 7mg. Next tuesday will be 2 weeks on this dose. Ever since I did the last drop I've had achey joints and flushes. Today I got so fed up with it all I took 2 ibuprofen. Pain gone in an hour. Next tuesday, if I feel OK I'll do a half mg drop. If I still feel discomfort then I'll wait another week and try again. I have a very good Rheumy and she has left the drops to me. She said that it's no good dropping the steroids if you are in pain because you have to go up again to a much higher dose. In the long run you will be on steroids longer. If you make a drop and your conditions get worse for more than two weeks say, then you have choices to make. One, live with the pain, two, go back to the dose that sorted the pain or three, do as I do and take 2 NSAIDS. I have been advised by my Rheumy that one dose of ibuprofen per day is fine. For me it works and I do not have to go back to the bigger dose of steroids. I only use ibuprofen occassionally.

I don't know what dose of steroids you are on now, but try to stop worrying about them. You're stressing yourself out and that's pulling you back.

I have to say that my way of fighting this illness is "my way". Your doctors might say "no way!"

Without Pred. you are at much greater risk of developing GCA. There is no time limit on drugs when dealing with this illness. We are much behind time when dealing with PPMRGCA because so little attention was paid to each of them in the past, therefore it's got to be fine tuned to each patient.

Thankfully, it's now getting better, and it's all down to the efforts of those who, not many years ago, realised there was no help for them when they developed these conditions and fought to get help. Part of the help was this forum. Now we can communicate and swap ideas.

MIDGES!!!! One of the delights of my life are my plants and flowers. Sometimes I have to water them in the evenings. I often come in itching for England and Scotland too.

Pats.

[janimaths in reply to Hidden]

Pats - very many thanks. Your reply was extremely helpful. Your early advice to me about sugar was taken on board and I have begun to attempt to cut out other sugars eg take blackberries instead of sugary grapes, and I know I must alter the ratio of fruit to vegetables, which I love anyway, and eat lots more veggies - its so easy. I have learned that if I do things this way, and have 4 small 'meals' daily I do not have so much retention of fluid and sometimes feel almost 'normal'.

I was not aware that even a half mg drop could cause discomfort but really it makes sense that dealing with this drug must be carefully and minutely monitored. I think I should start a little journal to refer to, as there is still at least another year for me to go. Accepting that there's no rhyme or reason to PMR has been something for me to learn. And it seems that trying a half mg drop after a fortnight, but only if the aches are quiescent, is worth a try. Yes I am a worrier and I have also found out that psychological stress is a trigger for the illness to flare up.

I had a wonderful husband who died 7 years ago. He was a gastro-enterologist, lovely supportive man, and I sure could do with his support right now in the house and to lift my spirits. But there - we women are nothing if not resourceful and I'm going to audition for the cameo part of Fairy Bovver Boots in the local dramatic society's first panto in December. The rehearsals will get me out and as everything happens in the evening the PMR pain will be in the background. If I don't get the part I'll do props or something else. Onwards and upwards.

[Celtic PMRGCAuk volunteer]

Hello Jan

I echo Pats as regards sugar. You don't say what dose you are currently taking but when you arrive at the lower doses, it's especially important to reduce sugar intake, also caffeine, as both these 'favourites' can aggravate the adrenal glands which will be trying to recover and get back to making their usual suppy of natural steroid (cortisol) from having been suppressed by the steroids. Also too much sugar in our bodies can add to the risk of steroid-induced diabetes.

Staples in my diet since being diagnosed with PMR and GCA 5+ years ago have been daily 'live' yoghurt (organic, fat-free and unsweetened), Manuka honey (helps with immunity which is reduced by the steroids), fresh lemon squeezed in warm water (like Manuka has a whole host of benefits, including aiding digestion), oily fish several times a week including sardines (with bones), salmon, mackerel, beetroot, avocado, garlic, turmeric - all good for helping to reduce inflammation. I have avoided processed meats, substituted sweet potatoes for too many white potatoes which turn to sugar in our bodies. I rarely drink decaf tea and the occasional decaf coffee. It's entirely possible that none of these will shorten the course of the disease but it was my belief that they helped to reduce my pain levels along the way thereby facilitating steroid reductions.

The yoghurt and lemon huice have been particularly beneficial for me as I was unable to tolerate any of the stomach protection pills(PPIs) prescribed alongside the steroids, including Omeprazole and Lansoprazole - one of them played havoc with my bowel, can't remember which one, and the other produced some weird pains.

You are very lucky if you have experienced relief from pain during a flare by just increasing the steroids by 1 or 2mgs - I found I had to increase back up by at least 5mgs, which was so frustrating but it was easier to return back to the lower dose next time around. The secret for me when at 5mgs for the 2nd time was my excellent rheumy keeping me there for many months - I baulked when he suggested this but with hindsight it turned out to be excellent advice. I then managed to reduce successfully but only in half mg dose and only trying the new dose on one day of the first week, two days of the second week etc - so painfully slow but it worked and enabled me to get to zero........finally. It seems 5mgs can be a stumbling block for many, probably because those adrenal glands are working so hard to try and kick back in, but reducing at a snail's pace seems to trick the body into not noticing the reduction.

Having said all this (if you've read this far without boredom setting in!) everyone is different, PMRGCA features manifest themselves in different ways and, likewise, with steroids, everyone responds differently. I do hope this is of some help.

As for midgies, I don't think I'd survive in Scotland - the little perishers have seen me on antibiotics many times with such side effects as swollen eyes, cauliflower ears, leaving hubby bemused - he doesn''t know what it is to have an insect bite!

[janimaths]

Great reply, like Pats. I really get help from this group. Must go out to see friends and will reply later more fully.

[janimaths]

Hello Celtic.

This reply is possibly another set of little questions. Liked seeing your list of foods. The silly thing about me is that I have always had an excellent diet with all the things you describe, then used to fall into eating sweet things in the evening. Daim bars, Galaxy milk chocolate, even condensed milk straight from the tin. Being good is Maltesers. My adult daughter despairs of me. Scotland's influence again I'm afraid, but I never sank so low as deep fried Mars bars. After Pats telling me about sugar which I have always been aware of, a habit I have tried to kick, but seemed unable to until she spelled it out as you have, my evening treat now is tiny raw broccoli spears dipped into no fat yoghurt or Quark with chopped walnuts in it or quite a lot of fruit which also contains much sugar. So tonight its raspberries after dinner of home made spicy cauliflower soup with a dollop of yoghurt in it (perhaps I should go put some turmeric in it before heating) boiled chicken, green beans and brown basmatti. I cook from Yottam Ottolenghi and favour that kind of thing, until I hit the sugar again. I'm a disgrace - but I AM trying. Once had hypnosis to stop me from eating sweets and I no longer eat liquorice allsorts but still can binge on everything else...!. It is getting better though..

After 4 months of starting at 15 mgs pred I was down to and had just begun the prescribed hospital protocol list of 7.5 for 2 months, having been on 10 and 7.5 on alternate days for the past two months. I remember KateGilbert suggesting that my 'drops' were too rapid and she was right and I realise I am too keen to get off steroids. Without warning, and for the first time since firm diagnosis 4/5 months ago, my upper arms, one shoulder joint and to a lesser extent hips started up, with accompanying pain and I was unable to do much with my arms. I went up to 10 again which seems to be easing the pain but it varies. Some mornings I wake in considerable pain and can't shower or get on with the day, other mornings the pain is there but much reduced. When the pain is dominant I also get clicking in the joints and can feel a kind of slight sticking resistance in them when I first move. Its interesting to read of your very slow reduction of preds in .5 mg doses. I will try that when the time comes. Am I right in thinking that you reduced down from 5mgs at only .5 of a mg on one day a week. the following week 2 days a week etc., - that means you took 7 weeks to come down 1 mg to 4mgs?

Thanks for all your information. Much appreciated. Just one more query - isn't Manuka or any honey just solid sugar? Must go have a teaspoonful anyway as I have been so good today. Uh oh. No I won't, yes I will. No I won't, yes I wiill, no I won't ad infinitum. No. I WON'T..

[Hidden]

Janimaths

As you are located in Scotland, you might like to contact the following:

PMR GCA Scotland Registered Charity. They will supply you with a wealth of factual information on both PMR and GCA.

E-mail: info.scotland@pmrandgca.

org.uk

The website is: pmrandgca.org.uk

You might even live near where they meet as they run supports groups.

Well worth contacting.

[janimaths]

I must have missed them on the web - saw mostly North East sites. I will certainly contact them. Good to know and many thanks.

[Pipistrelle]

I was put on fairly fast drops -- every two weeks at 2.5mg-- from 15mg down to 7.5. This did go fine and then I went on longer pauses (much much longer) between drops of just 1mg but had some flares after a series of flights. Since then an orthopaedist friend --who also had PMR --has recommended going up slightly before long flights. I got stuck with a flare at 5mg, and eventually had to go up to 7.5 again -- had bad complications in my knees. But again the orthopaedist believed this was NOT PMR per se but an existing deterioration as I've always had weakish knees, exacerbated by having the rheumatic condition on top. I really did not want to go up a lot on preds again so (with his approval) took a daily ibuprofen and iced my knees a few times a day and this brought the knee issue back under control.

With both knees and one shoulder -- yes they click around which I am told is the bone catching a bit in the joint because the tissue that would normally cushion the joint is affected. Reduce the inflammation and this does settle. That may mean an increase in preds, that may mean some NSAIDS (only under medical guidance as taking both can be very hard on the stomach), it may mean icing the joint, getting some physio, etc.

After that bad period, suddenly things started to rapidly improve and I am now down to 3.5mg. The timing of rapid improvement exactly overlapped me returning to the pool and working to increase my swim back up to a mile three times a week. Swimming strengthens the muscles that support shoulders and knees and I went from having almost no strength in my legs to being back towards my fit swimming level. I know the recommendations suggest gentle exercise and especially aqua fitness or swimming but I actually think more vigorous exercise in the pool makes a huge difference -- I suspect not just building strength around joints but that this kind of exercise opens up those constricted blood vessels which cause our PMR/GCA pain in the first place.

I also really focus on good diet including kefir and probiotic drinks (loads of research shows tummy bioflora have a major and unexpected role in some anti-immune diseases and likely many other illnesses -- & a good diet helps support a wider rage of bioflora; it all fits together). I also am taking Zyflamend, an herbal antinflammatory which has shown a lot of promise on proper clinical tests. It's a best-seller in the US and my steep recent improvement does also parallel the time -- a couple of months after starting -- that is said to take herbal remedies to start to help in any way.

For drops now, I am doing 1/2 a mg per drop, about every four weeks, with one week spent alternating the new dose with the old dose. I think alternating makes a big difference and has prevented those really bad initial aches on drops.

For the first time since I got this 18months ago, age 52, I actually feel the condition may indeed be going into remission. Yay! Being able to swim again makes me feel I have a cherished part of my life back -- the part that says I am normal (even if I have to get out of the pool slowly ).

In summary, my recommendations to anyone with these conditions:

1) do NOT rush prednisone drops and do NOT (as hard as it may be) think you have say 1 year on preds and a setback has extended it by X months. You simply have to go with what your body directs, and flares due to too-fast drops will delay things, so get each level under complete control. Don;t drop more than 1mg each time after 10mg and I'd recommend 1/2 mg after 5mg is reached.

2) realise that most people will have some aches still on each level of preds (only doctors seem to think we should all have no pain!! LOL) but if it is debilitating then go back to talk to the rheumy. Maybe the diagnosis is wrong; maybe you need longer on a higher level. My ortho friend says each level is like a smouldering fire and if you don't put it out completely, it will flare up again as you lower the preds. Don't do drops if you are hurting a lot. Every person's response is really individual though there are general recommendations.

3) do exercise, especially anything in the pool. Better to do initially in the afternoon or early eve when you are most flexible. Only now can I comfortable swim in late morning -- morning stiffness prevented that for ages. BUT that said if I swam in the am I'd go from having trouble flexing knees on turns to push off the wall at first, to having no problem doing this within 20 minutes (be sure to walk too every day to get weight-bearing exercise, However this type of exercise did not even remotely approach the improvement in PMR symptoms I get with swimming).

4) come here and to the forum at pmrandgca.forumup.co.uk/ (and there are others too) to talk to others, read about others' experiences, ask questions. It will help keep you sane and encouraged!

5) finally try to accept you have this illness and make adjustments as needed (and learn to make adjustments/ask for help when needed!). It was all hardest for me mentally at first when I was just in shock and disbelief and could only focus on what I could NOT do. Now I focus on working towards things I CAN do, and extending that bit by bit.

[Hidden]

Dear Pip,

What a wonderful reply. You give inspiration to us all, I'm sure. You are doing so well. All our hopes go with you!

Myself. I have struggled down to 6.5mgs and it was fine for 3 days. Then I decided to go out and really clean my Volvo which was, through neglect, covered in muck, green slime and moss.

I spent an hour and a half rubbing, scrubbing and rinsing. Stopped when I had restored my beloved Marlene to her former glory and retired within the house to cook the evening meal.

On waking the next day I found that my body was consumed with pain. Not just muscles, but elbows and knees too. I was a complete wreck.

The answer. Back to 7mg of pred plus one dose of ibuprofen. Today, pain much reduced. It seems to me that ibuprofen works for me. I took 7mg of pred and one dose of ibuprofen today and, apart from feeling a little tired, I feel back to normal. Next tuesday, I will drop to 6.5mg again and hope for the best. We sufferers must decide what strength the drops must be. We must listen to our bodies and respond accordingly. It's all down to fine tuning. If our adrenals aren't up to it, they need assistance.

N.B. If you are not on meds to protect your stomach, then be careful with NSAIDs. I never take ibuprofen with pred. I take pred on waking, with tea and toast. If I take ibuprofen, I wait at least 2 hours after. I no longer take Omeprazol, It caused probs for me, but I always make sure I take my drugs and the many suppliments I use to aid recovery (I hope), with food. So far, it has worked for me, but I must stess, listen to your own body.

Mild headaches and achy joints are part of withdrawing from pred. Our bodies are very reluctant to let go of this mighty drug. Lets face it, this powerful anti inflammitory has sent our adrenals to sleep. We must use intelligence and guile to loosen it's grip on our bodies. Lets remember also that to date PMR is not curable. It is not fully understood. We are at war with two enemies. I also find that a hot shower works wonders for me. I get under the heat with pain and get out with none.

Pats.

[janimaths]

Most grateful to you for taking time to give so much information. It had considerable reverberations in me as it was exactly what I require. Also made me smile because I used to be a competitive swimmer, backstroke primarily, and breaststroke and diving, even now never more content than when in the water, although at present a little gentle sculling is about all I can do. I'm inclined to go to the pool and just read the paper, because pulling wet clothing up and down is so painful on the biceps.

I have gone up to 12.5 mg as clearly I require to. My GP advised the 5mg jump up about 2 weeks ago, and I only went half way and still hurt - I was not very compliant because I hadn't truly accepted the limitations and debility caused by the PMR and mentally kicked against it. I see her in 2 days time - she's good and has a special interest in PMR. The summary you gave contained much good sense and if I can get my sugar addiction under control (my adult son jokingly refers to sugar as 'the empty calories of the disadvantaged' when he spots me on the chocolate) and when I begin to get myself under better control and add more therapeutic things to my diet, then I may be able to return to my part time work sooner, rather than later, and get on with what I enjoy. Despite the sugar, oddly I am not overly heavy and have gained 5 pounds since the start of PMR, mostly on the belly. I used to feel sorry for my dog when he was swollen with steroids; now he's off them, he's thin again and I look the way he used to!

I now have a better idea of making the drops, little by little, and will discuss with my GP. Lots of good advice on this site from many people. It seems that the 'luck' of PMR is just what is thrown at us by some malevolent sprite, but that some small percentage of what happens is up to me, and I can act on the good advice and encouragement offered here. And the answer to my original question is that I can make drops when my PMR will allow. I am also learning that acquiring knowledge of the art of the possible calms some recently experienced mood swings. Starting to feel more positive. Good result.

(Its getting into the pool that stymies me).

[janimaths]

PS My reply to Pipistrelle's post was pipped at the post by Pats who got hers in about 30 minutes before mine. We were writing at the same time, in the wee small hours, when we might been sound asleep were it not for the steroid effect. More nasty pain this morning, maybe from not resting during the night hours? Off for the hot shower - good tip Pats - works for me too.

Janimaths

[Hidden]

Hi Jan,

I find it rather funny - the two of us beavering away at the keyboards when we should be away in the land of nod. I guess it's quiet then and I find I can concentrate much better. What did I get for my troubles - weird dreams full of folks I know who suddenly had also got PMR. I was trying to advise them on steroid dosage and they were all eating the stuff like it was Smarties. I woke up in a sweat this morning and, like you, achy. Serves us right.

Pats.