Relapse advice

Hi Jo-anne

I did it even more slowly than Ragnar following a severe flare at 3mgs.

Problems had really started at 5mgs (a common sticking point) but knowing no better at the time I continued as instructed by my rheumy to reduce 1mg a month down to 3mg, at which point putting one foot in front of the other was agony. After having to increase back up to 10mg for a while, followed by alternating back down via 7.5 to 5mg, I was then advised to stay there for 5-6 months to get complete control of the inflammation again following the flare, before further reducing.

After reading Ragnar's regime, I decided to follow a similar pattern but even more slowly, reducing by just half a mg to 4.5mg and only on one day of the first week, two of the second, three of the third etc, taking about 7 weeks to reach the new dose daily. After a couple of weeks remaining on this new dose, I then repeated the pattern down to 4mg, and so on. It was a snail's pace but it proved successful and I got off steroids.

If anyone suddenly finds a problem reducing around the 5mg point, then it's usually because their adrenal glands have not yet got up to speed in producing their own natural steroid (cortisol) after being suppressed by the higher dose artificial steroids for so long. Our adrenal glands produce the equivalent of around 7.5mg of steroid when well so as we reduce at these low doses, we have a shortfall until our adrenals catch up. By reducing in tiny amounts and over a longer period of time, our bodies seem to be tricked into not noticing the steroid withdrawal whilst at the same time our adrenals are picking up speed again.

You may need to go slightly higher than 4mgs to feel better, but even if it proves successful, "staying on it for only a day or two and then going back to 3.5" is a little too ambitious, I feel. If it works, you would be wise to stay there for a couple of weeks. Good luck!

MrsO

MrsO

Also great advise, even my rheumatologist said this would be the most difficult time in reducing the pred levels. It is funny though that he advised reductions of 1mg a month without a titering regime. I will definitely go down in very slow/small increments from now on. He wanted me off the pred by the middle of March but that does not seem doable, so he is just going to have to deal with it after all it is my body. Thank you so much for you input.

Jo-Anne

I do wish doctors would realise it isn't a race to "get off pred". Pred only controls the symptoms so you have a decent quality of life until the underlying autoimmune disease goes into remission. It isn't a case of reducing to zero willy-nilly - it is a reduction to the lowest effective dose.

Eileen

Yes, what a wonderful thought to be able to come off steroids just when the Dr wants us to, whether we've recovered or not, it seems! It just proves many GPs' lack of experience with PMR otherwise they would know that everyone is different in both their response to the illness and to the steroids. As you say, Jo-anne, "it is your body" - he doesn't have to walk in your shoes! Hope you feel better soon.

I'm checking in with an update about what I have done and hoping I've not caused an issue for myself as I search for my best starting point after stopping my Prednisone entirely and then relapsing. I recently asked if I should increase my dose above 5 mg to see if I could reduce the last bit of stiffness/aching I have in my neck/shoulders. Eileen's advice was that I try 10 mg for a few days, then 7.5 mg for a few and then back to 5 mg. Although I've come to accept that Prednisone is a "friend", I just didn't want to take 10 mg so I tried 7.0 mg for 3 days and the rest of my aches disappeared. Then I went back to 5 mg and my neck/shoulder aches came back (on 5 mg for 3 days). So then I went to 6 mg and the aches went away again. I've stayed at 6 mgs since and it's been 10 days now.

So here is my dilemma - the PMR aches are almost 100% gone at 6 mgs, but I feel significantly better at 5 mgs because I have less Prednisone side effects. My side effects include a lot of fatigue/no energy (some days I don't leave the house), loss of appetite (I'm already too thin) and my cheeks are red (I can live with red cheeks).

I suspect your advice is going to be to give the PMR what it needs and to stay at 6 mgs for about a month, then see if I can reduce (to 5 mgs? to 5.5 mgs? I was thinking I would use Ragnar's method.) So if this is your advice, then I'm hoping you might have some suggestions about how to reduce my Prednisone side effects as I really dislike watching life pass me by. I do take walks or a yoga class if I have enough energy that day.

Eileen had asked if my neck/shoulder aches were PMR and I think they definitely are. This is where my PMR shows itself first and the aches have always responded well to the Prednisone.

I am finding this forum so so helpful - thank you to everyone for your great advice.

I'm sorry MrsCJ - there is nothing much I can add except to say reread the posts above.

The reason I gave the times I did is because it is something we have found doctors tend to suggest. You HAVE to hit the inflammation hard and get rid of it properly before going back down. Wishy-washy efforts are the same as just sort of wiping over half the work surface in the kitchen with a damp cloth when what it really needs is to clear away the stuff sitting around and getting out the scrubbing brush and the bleach. You are back in the same position you were within a short time. Overcome that fear of a few days at 10mg and you will probably find you can go back to 5mg - but ONLY if the inflammation is under control. The longer you wait, the bigger the task for the pred to overcome again.

You've only had PMR for a year and you still have a problem because really you need to be on pred, you came off far too quickly. However, what's done is done and unless you hit this problem hard it could become a long term yoyoing of the dose you LIKE with a dose that WORKS. That in turn will lead to you being on a higher dose than would be necessary for a relatively long time. Or you can abandon pred altogether and you know what that means.

"I really dislike watching life pass me by" - believe me, we all do. All of us have had a full stop put onto our lives for at least a few years when we became ill. I was 51 when it started and I have had PMR for nearly 10 years now - 5 years without pred, four and a half with, much of the time at over 10mg. I have had to give up a lot of things I was looking forward to when we moved here because even with pred it was difficult. But I have a different life - it isn't what I wanted but it's not bad at all. I had a really bad flare, probably GCA ,a couple of years ago and had to go to a much higher dose than I had got to. I put on a load of weight (really, don't complain too much of lack of appetite and being too thin because my weight gain wasn't entirely from eating too much! Just pred can do it too) However, in the last year I have lost about 30lbs and been able to reduce my dose to 5mg (nearly!). If the weather played ball and got properly winter I'd even consider getting the skis out for the first time for nearly 2 years. I can now walk a couple of miles - this time last year I could barely get to the village, 200yds or so.

"I do take walks or a yoga class if I have enough energy that day" - can I suggest gritting your teeth and talking sternly to yourself and push yourself to go out in the morning whether you feel you have enough energy or not? It has been found in studies that even a short walk - 5 mins, to the corner and back, or even just round the garden, is enough to boost energy and enthusiasm for a bit more. In that first 5 years I could have stayed in bed all day - it took me a lot of effort to get out of bed and dressed never mind anything else. I found a gym with a warm pool which did aqua classes most mornings. I didn't get dressed or even showered - I put my swimsuit on with a tracksuit on top and forced myself to the car. All I had to do there was get to the changing rooms, take off the track suit - and stand under a warm shower. That was a good start. Sometimes I spent a few minutes in the sauna - and then I got in the pool and did as much as I could of the class, at my level. By the time I got out of the pool I could move better - and my mood was also lifted. And I looked forward to the next day and seeing my new "friends". Last year was worse - it was a walk on crutches, no other choice! But each day got better.

To a great extent that is cognitive behavioural therapy - because having a chronic illness and having to take medication often leads to depressed mood - and PMR can cause that too. So can pred I admit - but if you sit down and give in to it you won't get anywhere. If you say "I can" and do what you can - not forcing the level too far - things will look rosier. As things improve there, other things will improve too. Now don't misunderstand me - I am NOT telling someone with depression to pull themself together. The fact you DO go out and do some exercise suggests you aren't clinically depressed - even if other things might point that way. If you ARE depressed - then you need professional help.

My advice remains the same - try a week at 10mg and then come down again. I've explained the logic behind it and there is clinical experience to say it is the best way to go. You haven't fully come to terms with pred being your friend when used properly. That is something only you can do - we can make suggestions for ever but we can't change that for you.

The other thing I would do personally is find someone to give me a shoulder massage - though I know it doesn't work for everyone. It does for me - I had a wonderful one on my wedding anniversary a couple of weeks ago - I need to go back :-)

Eileen

Hello Mrs CJ

I know this isn't what you really want to hear but yes you should stay on 6mg for a good few weeks if that is the dose that seems to be controlling the inflammation.

You have already suffered due to coming off steroids far too quickly and now this time around you are getting into a yoyo situation with the doses and that is almost never successful.

Increasing to 7mg and finding that your aches disappeared is proof that that dose was the right one to keep the inflammation at bay for the time being. Decreasing straight back down to 5mg after just 3 days was a mistake as proved by the return of your neck/shoulder aches.

Eileen has already given you her good advice that you increase back up to 10mg, and you may also have ready my post in this thread where I mentioned my success by increasing back up to 10mg and slowly returning back down to 5mg where I stayed for 5-6 months.

So my advice would be to stay with 6mg for a month and then, if all is well, try reducing but only by half a mg to 5.5 and, again, stay at that dose for another month.

With regard to the side effects, it's more important to deal with the inflammation in your body which can also lead to fatigue - unfortunately there isn't an answer apart not overdoing things on a good day, having a rest each afternoon, plus continuing the short daily walk which can help to invigorate you and lift your moral. For any continuing neck/shoulder aches, have you tried seeing a physiotherapist to see if you have any knotted points that could be relieved with gentle massage. I found this worked for me when at the lower doses I was experiencing bad shoulder and upper arm pain. It is important that the physiotherapist is aware of PMR and the inflammation in the muscles, and s/he should not do any manipulation but just gentle massage, heat treatment and ultrasound.

Hope that helps.

MrsO

Thank you Mrs O and Eileen for your advice. Mrs O reminded me that inflammation can also cause my fatigue so although my aches are pretty much gone, perhaps 6 mg isn't enough to control my inflammation. I know I had a little better energy when I tried the 7 mg. And when Eileen said "You HAVE to hit the inflammation hard and get rid of it properly before going back down" it just made sense to me. So I want to try the higher dose of 10 mg and I have taken that much today and will continue it for a week.

Eileen, could you clarify the "come down again" where you say "Try a week at 10 mg and then come down again". I'm not sure if you mean drop overnight....drop to 7.5? for how long? then what?....as earlier you had suggested I try 10 for 3 days, 7.5 for 3 days and then back to 5. I think what is confusing me is that I know about Eileen's reducing plan and Ragnar's method but it appears that when someone relapses they don't necessarily use the slower reduction methods....they up their dose temporarily and then reduce it more quickly.

Mrs O, you said you had to go up to 10 mg "for awhile alternating back down via 7.5 to 5 mg" but I'm not sure how you transitioned from 10 to 7.5 and how long you stayed at 7.5 before going back to 5.

Depression isn't an issue for me as I'm chomping at the bit to get out and do things. I am guilty of being mad that I have this illness especially since I got it so soon after my diagnosis of non-celiac-gluten-sensitive (celiac biopsy was negative). And yes, even a short walk improves my day!

You probably could get away with dropping to 7.5mg from 10mg "overnight". But as I said to someone else today, if you are worried then doing 2.5mg every week is much the same as doing 1mg every 3 days. The step is slightly less so maybe a lesser shock to the system. But the point is generally that if you go up enough to clobber the inflammation you can then go back to where you were relatively quickly. Everyone is different - I can't say you will be fine with 2.5mg at a time until you have tried it.

Yes, reducing here is a bit different from the ordinary sort of reduction. What you should be doing with the basic reduction is not reducing to zero in a continuous process. You are looking for the lowest dose that controls your symptoms. To find that you need small steps and stay at each one for a few weeks to see if it still works. If you had done that originally you would probably have found that something about 3 or 4mg was OK, maybe 5mg. But you went so fast you missed that. If you deal with the inflammation the chances are that 5mg will do the trick. Then I'd say stay there for a few months before starting to try reducing further - just to let your body catch up.

You know - you need to look at your non-coeliac gluten sensitivity as a blessing in disguise! I do. I'm not sensitive to all gluten, in fact it is more likely to be something else in the wheat structure, but I also have to be very careful what I eat - eat wheat and I itch until I bleed. It has made my diet far healthier than it was before because i can't eat any junk food! It also reduces the amount of carbs I can eat and that has helped with weight/diabetes problems whilst taking pred. I have friends who are coeliac who told me they never had a weight problem until they were diagnosed and then they put on weight with the special gluten-free goodies that are so easy to get these days.

And there you are - you know in your head that getting out however rubbish you feel makes things better! Now you have to persuade your heart ;-)

Hello again Mrs CJ

"you said you had to go up to 10 mg "for awhile alternating back down via 7.5 to 5 mg" but I'm not sure how you transitioned from 10 to 7.5 and how long you stayed at 7.5 before going back to "

Under the guidance of my rheumatologist and with the help of blood tests, I increased to 10mgs and reduced as follows:

10mg for 2 weeks

7.5mg for 2 weeks

7.5 and 5mg on alternate days for 2 weeks

5mg for 10 weeks.

ESR and CRP blood tests were repeated and were both normal.

I was then advised to remain on 5mg for another 4 months in spite of normal bloods. With hindsight I believe this long stretch at 5mgs to be the best advice for anyone struggling around the 5 to 7.5mg level.

I did have another little 'blip' but at that point learnt to reduce by only half a mg from the 5mg point and tapered over quite lengthy periods (7 weeks) to each new dose. This doesn't mean to say that everyone will need to reduce quite as slowly as this but it worked for me and both my PMR and GCA went smoothly into remission from thereon seemingly tricking my body into not noticing the reductions!

So glad you've been brave and gone up to 10 - good luck!

MrsO

Hello,

I am interested in this discussion because I have TWO autoimmune diseases (Addison's Disease and Vasculitis) which both require steroid treatment, but using two DIFFERENT drugs .. Hydrocortisone for Addison's and Prednisolone for Vasculitis. (I have variant called "Churg Strauss Synndrome (CSS)"

I have had Addison's for last 5 years and take a total dose of HC of 25 mg, taken spaced out during the day to match the normal cortisol level that my body requires so I have 10 at 7 am, 10 at 2 pm and 5 at 6pm.

I was diagnosed with Churg Strauss Syndrome in Apr 2013, and so am about 9 months into the journey towards remission status, and my rheumy consultant reckons I have about 2 more months to go before remission 'may' be attained. I take Pred plus Azathioprine 100 mg for the anti-suppressant to calm down my immune system.

My Prednisolone dose on diagnosis was 30 mg, and I am currently on 14 mg and tapering at 1 mg/week. My disease severity is 'mild' and I have got no organ damage due to the mild severity plus I was diagnosed very quickly at just 3 weeks after my CSS Stage 3 symptoms really became active. And I currently have no severe symptoms with only ones being breathlessness, oedema affecting legs/feet and some purpura skin rashes on arms and hands. So I do NOT suffer from fatigue, joint and muscle pain or any pain at all.

The main problem that I've had since diagnosis is 3 chest infections requiring hospital spells for IV antibiotics, caused by my suppressed immune system, and during the last hospital stay (came out 5 weeks ago), the Hydrocortisone (HC) was stopped since the Pred wsa doubled and doctors thought it not necessary to have HC as well. The recommendation is only restart the HC (25 mg, equiv to 6 mg Pred), only when the Pred taper reaches 10 mg level, since then I will need to restart the cortisol production due to being close to the 10-7.5 mg level when cortisol is not self-generating.

SOooooo .. my question is ....

1) How does HC work compared to Pred in reducing inflammation? With both is it an ADDITIVE dose for anti inflammation?

2) For cortisol production, HC is reguired to generate artificial cortisol

- do the hydrocortisone and prednisolone when taken together work additively or with no effect on one another?

Any comments or suggestions are welcome ... thank you .. Jon

Emis moderator comment: I removed the links to the articles on Addisons and Churg Strauss as there is information on patient.info on both of these.

Hi Jon and welcome - but I'm not sure this is the place to ask this! We're very good with our own illnesses but other vasculitis problems aren't our field! I might have been able to give a sensible answer to your question some years ago when I was still studying but that wasn't last week ;-)

Anyway, the difference between HC and pred is:

"Pred is a medium acting, long term steroid. It has a long half life. It can last longer than a day. So the body never rests - hence more side effects.

HC is a short term, fast acting steroid. It has a short half life. It allows the body to more closely mimic the natural diurnal rhythm if taken correctly (I will say, it is inconvenient) and is more like what the body makes itself. "

The half life is the time it takes for the body to get rid of half the amount - so something with a long half life takes ages to be got rid of from the body, in the case of pred it is several hours and the effects last for up to 36 hours, in the case of CH it is about an hour and a half. So with HC the body has lots of time between doses when it is not subject to the steroid effects - and you get fewer side effects as a result.

For us with PMR, we need an effect that lasts all day to keep the symptoms under control. We COULD take HC but we'd need several doses a day to keep the relief constant compared to a single daily dose of pred. In fact, it is sometimes possible to take double the dose on alternate days - the higher dose achieves a bigger reduction in the inflammation which, if you are lucky lasts for 36 hours or more - and you are in bed for the last 12 hours anyway. Doing it this way tends to reduce the side effects of pred but it doesn't work for everybody. On HC you'd need a much bigger dose too. The choice of corticosteroid is always related to the problem that needs to be solved - there are others with even longer half lives and they are sometimes used as injections for joint pain which continue acting for days or even longer. Horses for courses.

I imagine that when you are taking a high enough dose of pred the little blips of the HC doses are swallowed in the big wave of pred - a bit like a tiny boat on the ocean being almost invisible for the waves but it is a noticeable item in a small duckpond with mere ripples. So - when taking enough pred, no point adding in the HC - at some point though your body will need the replacement therapy again and 10mg seems a good place to start it as that is just above the equivalent amount of cortisol your body would make if your adrenal glands were working properly.

Does that help? Or is it as clear as mud?

You were very lucky to be dx'd so quickly - it sometimes takes months if not years to get a dx for an autoimmune disorder. Fingers crossed for an early and long lsting remission!

Eileen

Hi

I wanted to check in with you about what I have been doing and also about my new problem. As I mentioned above, I went on 10 mg for a week and then reduced by 1 mg every 3 days (stayed at 7 mg for a few extra days due to a little over exertion - a yoga position didn't agree with my shoulder muscles) and 5 days ago I started 5 mg and plan to stay there for a few months per your advice above. So far no aching or stiffness so I think the doses have worked for that, just like you suggested they could....so good news there.

The problem I've been having the last couple of days is significantly increased fatigue. I know from reading this forum that 5 mg can be an issue because our adrenals need to start working again and I've been careful to take it easy - and have very little stress (except for watching the Olympics!)

So I'm wondering if I just slog through this and stay at 5 mg or if you have suggestions for transitioning. For example, should I consider alternating 5/6 or maybe 5/5.5 for awhile to help the adrenals get started?

Just to mention that about a year ago before I was on prednisone a naturopath had me do a saliva cortisol test (4 samples during the day) and he said my cortisol was low and I had adrenal exhaustion. I mentioned this to my GP and he ignored it - apparently it's an alternative medicine thing here. Even the Mayo Clinic website doesn't recognize it. But it does stick in the back of my mind...especially with my current fatigue. I'm in Canada and perhaps your country feels differently about this.

Hum - the salivary cortisol tests are, in the meantime, not bad estimates of cortisol levels if done properly (compared with blood tests that is). However - when your average "naturopath" does them and tells you your adrenals are exhausted it is almost certainly associated with them wanting to sell you something. And make a profit. Anyone can set up in business, call themselves a "naturopath" and charge people for their advice and sell supplements etc. No qualifications or medical knowledge required. I use alternative therapies WHEN I FIND THEY WORK FOR ME so I'm not totally cynical about it.

In PMR the one thing that the pred doesn't necessarily help with is the fatigue. One of the side-effects of pred is making you a bit (or very) hyper at higher doses - so it almost certainly makes you feel less fatigued. For some people it makes them MORE tired. All that makes it very difficult to know what is going on.

Did you feel good at 6mg/day? If so, I would either go back and then reduce to 5mg far more slowly or I would try 5/6/5/6 for a while if you feel good at that. When reducing don't go "overnight" from every day 6mg to every day 5mg (for example).

Try 1 day 5mg, 6 days 6mg, 1 day 5mg, 5 days 6mg, 1 day 5mg , 4 days 5mg - until you get to alternate days 5/6.

Then do 1 day 6mg, 2 days 5mg, 1 day 6mg, 3 days 5mg, 1 day 6mg, 4 days 5mg and so on.

Once you get to 7 days 5mg, 1 day 6mg you can probably take the plunge and do every day 5mg.

Do the same sort of pattern for any 1mg reduction.

Several of us have tried this and it works. A consultant rheumy has also tried it for his patients - surprise, surprise IT WORKS!!!

I don't have a problem with the salivary tests - it is what they then try to sell you that is dodgy. It's the same with diets and supplements that cure this that and the other. The acid test is: is it going to make money for somebody? If it is - think hard about it!

It will take you a while to readjust to a lower dose of pred. You have a choice really: either you cut back what you are doing for a few weeks or you transition from one dose to the next much more gradually. Both will work probably.

Some people will have this problem at 8mg, others at 5mg. Find the dose you feel good at when you take it every day compared to the 1mg lower dose where you don't feel so good - and make that transition really slow.

That's the advice I'd give you on my own experiences.

Eileen

I am so thankful that I found this site and can relate to everyone. I have kept myself in relapse for 2 years coming off of prednisone too fast. My Rheumy put me on methrotrexate and sulfasalazine and I woke up pain free on Jan 31st and it is Feb 18th and still pain free. Maybe it is too early to tell but I have gone to the swimming pool and splashed around and it felt so good. Told my husband that I felt like Nelson Mandela....free!