Have to increase dose again!

Sorry to hear you are having problems Beev

I find if Im having problems the sooner I increase now the better as the pain drags you down I did have quite a bad week last week but I have had a poorly horse so its all been quite stressful so I was thinking I might have to go up but Im feeling better now so will plod on ( Heading for 2.5 very slowly !)

I know its really difficult for you with uncoated tablets I suppose no one will make a coated 1mg now as everyone is being pushed on to uncoated 5mg I still havent had uncoated 2.5 though ?

Hope things improve for you This forum isnt very popular with the new format and all the "regulars" use the North East forum

Best wishes

Rosemary

Hi Beev,

I'm new to this site but am very interested to hear about polymyalgia rheumatica. I was diagnosed a year ago and have had ups and downs but was finally weaned off Prednisolone.two weeks before Christmas. I spent Christmas with aches and pains and had to be given 10 mgs. I am now on 7 but every time I reduce 1mg I get the symptoms back. Any advise please.

Hello Beev

Good to hear from you again though not so good to hear that you're struggling to get back down below 5mgs again.

I can understand how difficult it must be, particularly at these very low doses, to reduce when you can only tolerate coated pills.

Much as I'd love to give everyone a bit of a morale boost and be able to say I'm off steroids, I'm still not quite there. I know it seems as though I've been on the very low doses for an eternity, but things such as my spinal problems and little niggly GCA 'flutters' keep getting in the way and complicating things. I am now on just half a mg every fourth day (for the last few weeks). On Friday, I even feared I was into a big PMR flare, as I was struck down with sudden excruciating pain in my lower spine and legs. After a couple of days wearing my support girdle, I feel much better so the culprit seems to be my spine on this occasion, possibly the result of sitting awkwardly in the optician's chair early on Friday morning where you have to lean forward to put your chin on the chin rest for the exam.

It's difficult to believe that my tiny dose is doing anything but such is the power of steroids, my body's long term use of them and not least the psychological aspect! With warmer weather on the horizon, I'm in hopes of 'getting there' soon.

I do hope the warmer weather will help you and everyone else with this complex condition too.

Shirley

Hallo lupe. I'm sure others will be along to say that your reductions have to be smaller as the dose gets lower if you are to avoid"relapses". The received wisdom is that you should not reduce more than 10% at a time. This can get tricky but it's ok once you get the idea. If you don't have one, get yourself a pill cutter. Mine is from Boots and works fine.

Another way is to alternate doses. I am on 3 and when I go down to 2.5 I should only reduce by 0.3 but cannot cut pills into tenths so will take 3 , 2.5, 2.5, 3, 2.5, 2.5, 3. Maths not exact but you get the idea.

Not sure if it's on here or only on the other forum but Ragnars method is well worth studying method has worked for him.

Not sure links are allowed but google PMR GCA NE if not.

www.pmr-gca-northeast.org.uk

Hello lupe (love the name!)

Wow! What a fast recovery from PMR you had in less than a year. It can be quite comon for flares to recur within a few months of stopping steroids especially after such short-term treatment.

If you are taking uncoated pills, have you tried cutting them in half (coated pills should not be cut) and reducing much more slowly. Pill cutters are available from the pharmacy. The other possibility is that you may not be staying on the higher dose for sufficient time to get the inflammation under control - do you have ESR and CRP blood test markers to guide you? A general rule is to remain on each reduced dose from 10mgs for a month unless blood tests show continuing raised inflammatory markers, although a few people with PMR and/or GCA don't ever show raised markers. Once below 5mg, the general recommendation is to remain at each reduced dose for 3 months.

With a diagnosis of both PMR and GCA, it has taken me 5 years to reach half a mg every fourth day and the only way I could reduce below 5mgs without having a flare in symptoms was to reduce by half a mg on one day followed by 5mgs for 6 days; half a mg for 2 days and 5mgs for 5 days; half a mg for 3 days and 5mgs for 4 days etc. It seems to trick the body into not noticing the reduction!

Do hope this helps.

MrsO

lupe Mrs.O has already given much the same answer as I did but mine is held up because I was stupid enough to include a link.

This site used to be simplicity itself; it drives some of us nuts now so I do recommend you join the other forum, too, as everyone posts on there. All there is to say about this new format is it's got pretty colours

lupe - welcome to a much reduced band! The other forum is the busy one now and is fun with emoticons and other things this new "improved" version doesn't have ;-)

Now, this is a speech I've given many times in the last few years! When you develop PMR and are put onto pred that isn't a cure. PMR is the name for the constellation of symptoms you have

: latin for many painful muscles. It is caused by inflammation which causes swelling and that, indirectly, lead to the pain. The pred reduces the inflammation and, as a result, the symptoms go away, usually very quickly. You are started on a dose that is high enough to work for the vast majority of patients, usually recommended to be 15mg/day. The next step is to reduce that dose to the lowest level THAT WILL CONTROL THE SYMPTOMS. It is not to reduce the pred steadily to zero - you may be lucky and not need pred for long BUT a majority of patients (about half) need to be on that reducing dose of pred for anything from 2 to 4 years. About 25% will be able to stop pred in a year or less - but they are at a much higher risk of the PMR returning sooner or later and having to start all over again as you have found. The return may be quick as for you or it may take longer. The rest, the other 25%-ish, need pred at a very low dose for a long time, sometimes even for years.

The PMR is due to an underlying illness, an autoimmune disease which causes the immune system to attack our own bodies as if it were foreign to it. That continues until it possibly decides to "burn out" and then you go into remission and the symptoms go away - sometimes permanently, sometimes not. As long as the autoimmune disease is still going on you will need a dose of pred to control the pain and stiffness. Many doctors still insist on telling patients that it lasts about 2 years - we have asked them not to, it builds up hopes that they can "get off" pred quickly, but they say telling patients they may be ill for years is too depressing. Personally, I'd rather be told that it might take years but it might be sooner than be told you'll be fine after 2 years and discover that it hasn't gone away. I've had it nearly 8 years - 5 without pred as it wasn't recognised. It still hasn't gone away. MrsO described your 1 year as "a quick recovery" - I don't think it was a recovery, the dose of pred was too low and allowed the inflammation back again. There used to be a sticky thread that had an analogy that explained how it all works in dead easy language, new and improved means it has gone. It is still to be found over at the "other" forum ;-)

It is common for difficulties to arise at 10mg, 7mg and again at lower doses. Some people find staying at the dose below which they have problems again for several months before trying another reduction. In any case, below 10mg no reduction should be of more than 1mg at a time and you really need 2 to 3 months at each to stabilise before trying another drop. Now you have had one too large drop and the PMR has flared up you will probably find reducing more tricky - that is a common result of yo-yoing the dose and has been confirmed in medical studies. Many doctors seem to think that reducing the pred in PMR is the same as with other illnesses where pred is used. It isn't, it has to be much slower and you are aiming for a long-term goal.

And the final - and the most likely - reason for getting stuck at 7mg is that that is the dose you need to control the amount of inflammation you have at present: this is the lowest dose you were aiming for from the outset. This is a dose you may need to stay at for some time until the autoimmune disease dies out, if it does. You haven't failed, the drug hasn't failed - this is the level you need to control the illness AT THE MOMENT. This doesn't say you won't get off it eventually, just not at the moment.

I hope this helps - there is lots more about it that is easy to access on the other forum and on the PMR/GCA support groups charity web

Thank you all for the prompt reply . I feel I understand my condition better now and that it will be a slow process. I also developed Temporal Arteritis but the symptoms cleared pretty soon after taking steroids. I have Cataracts as well but have been operated on one eye and will have the other one done in 6 weeks time. My doctor said the sooner I weaned myself off the steroids the better, so he started reducing every 2 weeks but I know now this is not the proper way to go about it. I will be seeing a Rheumatolgist in March and think my doctor is going to ask about putting me on a different medication. will see what happens.

Thanks all

Lupe

Hello Lupe

Now that you have mentioned having been diagnosed with GCA (Giant Cell/Temporal Arteritis) as well as PMR, and therefore on a high starting dose of 40mgs, I am even more shocked that you wre off steroids in under a year. In that case you were obviously not being properly monitored which is crucial with a diagnosis of GCA - not to do so is endangering your eyesight. With a diagnosis of GCA, you should have been referred to a rheumatologist at the outset so thank goodness you are finally being referred to one now.

Although, as you say, your symptoms of Temporal Arteritis "cleared pretty soon after taking steroids", that doesn't mean to say that the inflammation is totally under control and certainly not cured.

My initial symptoms of GCA also cleared immediately upon taking a 40mg steroid dose and I was lucky to be under a good rheumatologist and successfully managed to reduce down to 15mg fairly quickly but always with the guidance of blood test results which were monitored prior to each reduction and with my rheumy's phone number by my side in case of emergencies.

The others have pointed you in the direction of a dedicated forum for PMR/GCA sufferers - a lot of sufferers post there, there is much helpful advice and information, plus some very funny and cheerful threads to lift us on a 'down' day. The old format here gave a sticky with the website but if it's somewhere here now then goodness knows where - it's http://pmrandgca.forumup.co.uk

MODERATORS - PLEASE ALLOW THIS WEBSITE TO BE MENTIONED.

THINGS SEEM TO HAVE STAGNATED WITH THIS NEW STYLE FORUM AS NOTHING THAT WE VOTED FOR HAS APPEARED OVER THE LAST COUPLE OF WEEK - WE STILL HAVE TO SIGN IN AS OPPOSED TO PREVIOUS AUTOMATIC ENTRY; WE STILL DON'T HAVE THE EMOTICOMS AND STILL CAN'T READ THE POST WE WISH TO REPLY TO, UNLESS WE ARE ALREADY IN AND REGISTERED FOLLOWING OUR PREVIOUS REPLY.

MRSO

Unfortunately, like you, I have developed cataracts, together with high optic pressures, but I believe the cataracts have stabilised since on the lower doses. I do hope your surgery has gone well and I wish you well with the other eye.

Oh dear Lupe - you aren't going to like what I'm going to say but I'm afraid your GP is playing with fire here if you have had temporal arteritis and he is reducing you like this. It is all very well saying "weaning yourself off steroids" is good - none of us wants the joys of pred and its side effects and none of us would take them if we didn't need them. If the disease is still active and you reduce the pred it comes back. It is as simple as that. Cataracts are a mini-side effect relatively speaking, you can deal with them quite easily, if the TA comes back you could go blind - you do know that don't you?

The mind boggles what he thinks you can have as "other medication" - there are a couple of other drugs which can be given as well as pred and allow you to have a slightly lower pred dose but they do not replace it. In GCA/TA there is no other drug that can prevent the loss of sight that can happen with temporal arteritis if it recurs. It is very common to have at least a couple of flares in the first 18 months or so even if you are still on pred, the dose needed for GCA is much higher than that for PMR. At least you are seeing a rheumy at last - given your GP's apparent level of knowledge that should have happened long ago. However - there may be a dispute as to whether it really was GCA/TA unless you had a biopsy at the time and that should have meant you were referred to a rheumatologist then.

Do let us know how you get on - especially what your rheumy says in March. However - a year into PMR symptoms is not long. But it is the TA I'd be more concerned about letting back out of the bag.

all the best,

Eileen

Hi Lupe, Mrs O, EileenH etc

Lupe - you have all the replies you need now. Good luck!

I have looked on the other forum and dont know where to go on it to find this sort of conversation. Could you help me out please?

Also, I could do with some advice from the usual sources. As I have started today on 5mg AGAIN, how long do you think I should stay on that before starting the very slow decrease (Ragnars)? How often should I get my ESR checked?

Thanks

Beev

Beev

Not sure whether you will like my guidance from my experience but here goes! After a flare, my rheumy increased me from 3mg to 10mg, fairly quickly reducing back down to 5mg from 10mg by way of 10mgs for 2 weeks, 7.5mgs for 2 weeks, then alternate days of 7.5 and 5mgs for 2 weeks, then 5mgs for five and a half months! That had obviously been the original dose at which the inflammation was refusing to be controlled so it became a sort of maintenance dose. Very slow but it did the trick and I was then able to continue reducing but more slowly this time in half mg decrements. This was sort of Ragnar's method but even more slowly. And by the way, my ESR and CRP was checked and found to be normal after the increase and being back down to 5mgs for 2 months. The rheumy then continued to check the levels until down to 2mgs.

My reply to Lupe above is being checked by the moderators. When it appears, you will see the link for the other forum and you can post on there wherever you wish, either by clicking to start a new topic or continuing on an existing one.

MrsO

Hi Mrs O

Thanks - I know the address for the other forum. It's just that there lists when you get into it and I dont know which bit to go for!

I was stable for several months on well below 2.5mg.. Latterly I was on 2.5mg once a week - for about 2 months. I'm not sure I would call it a flare - or maybe it was. I put it down to huge stress with my other health problems and being convinced I had ovarian cancer. I got myself into a dreadful state.

Then my ESR went up and I went back onto 5mg for (I think) 2 weeks or a month(?) - my ESR returned to normal quite quickly - then went down too quickly instead of reverting back to my old slow method.

I'm thinking I should allow longer for it to stabilise on 5mg this time and then go down really slowly again??

By the way, I think someone on here (maybe Eileen?) mentioned some tablets loose in a pot which were not so good? Well, I've had stomach problems on some of those and then changed to the ones in a box and the stomach problems stopped. Has anyone else had that problem?

Beev

With the other forum I think it is a case of start with "getting to know you" (or whatever it's called, something like that). Each of the headings on the "front page" is meant to give a slot that is more appropriate for the comment/question you have. That's really the only difference from here. Each of those headings on the index has a load of different threads under it - which is like starting from the beginning here. You start with the page that gives all the different forums from A to Z and choose the PMR one to get here. The other forum is PMR at the front page and different aspects on the others. Some of the headings are rarely used - you can see the ones that are popular by the numbers of posts. As you use it you find out how it works and have a laugh at the same time :-) But it doesn't really make much difference where you post - someone will answer you and start a conversation and if it really matters the administrator will move your post to make it easier to find :-)

As I said to someone on here the other day - no idea where now - it may be that the very low 2.5 and below level that worked before is the amount you need to keep the PMR at bay rather than a step to stopping altogether. Remember stress of any sort can have an effect on that underlying autoimmune disease and that would aggravate the PMR symptoms, so yes, it was the other health problems but it also meant you needed the pred.

Or, as an alternative, one of the theories about PMR and similar diseases is that the adrenal glands are no longer working at 100% and the pred we are given is acting as what is called replacement therapy - just like being given insulin when the pancreas isn't functioning or thyroxine if you are hypothyroid. If that is the case, you will always need a bit of pred to boost what your body is producing for itself.

And a third possibility - since you mentioned it - is the tablets themselves. I had trouble with loose-packed enteric coated 5mg pills. It was as if either they had far too little pred in them or I just wasn't absorbing it. Most likely it was due to a different mix of ingredients that didn't agree with me - what the companies call the fillers - and that is probably what caused your upset stomach. But if the problems coincided with those tablets maybe you weren't absorbing the pred as well.

Anyway - having gone back to 5mg (is that per day, per week or what? ;-) ) and since your ESR did go up when you went back down with the dose it seems a good idea to get your doc to check your ESR regularly. If you stay on the 5mg until the ESR stops falling - i.e. gets to the lowest level possible and then stay there a few weeks more to make sure it stays there, you could then start taking 2.5mg instead of one dose of 5mg for a bit and see what your ESR does. If it stays stable, add in another reduced dose. If the ESR stays where it is - great. If it starts to creep up again, even a bit, you would know that the dose is on the borderline of what you need. You can keep adding another 2.5mg instead of 5mg at intervals until you get to that point where the ESR is wavering. If you then stay at that dose, keeping an eye on the ESR, you can see if it is stable or ceeping up steadily, in which case you need to add one dose at the higher level and stick there. If keeping an eye on your ESR does work for you it is great - if you can adjust the total dose over a week or two to keep it stable close to the lowest level you have reached it should work long-term.

As a physiologist, I would say that your body isn't making quite enough cortisol for what you need - it isn't far off though. The dose you are on is well below the amount equivalent to what the body makes so your body is obviously making some of its own cortisol but needs a small boost. In a similar way, my husband takes warfarin, if he takes 2mg/day every day his INR (the indicator of what's OK) rises steadily but very slowly until it is too high and he has to have a few days wi

Hi MrsO and others,

There is no problem whatsoever with you posting the websites, there will just be a delay until I get round to approving the post. I try and call in regularly but things are very busy at the moment.

Things have not stagnated, it just takes a bit of time to get things done as we need to request changes as development work with the team that built these forums. The first batch of changes, including ones mentioned above, should be live in the next couple of weeks - I will look at starting a discussion to post news about changes.

With regards to the stickies from the previous site - they are still available. If you are on the PMR list of discussions here https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-1708 there is a tab at the top of the page - Most Useful. Click on that and the 2 stickies are at the top. To ensure these stay at the top, when users view the 2 posts click on the thumbs up icon. This increases the votes for these posts and keeps them top of the list on this tab. I have just added the direct link to the NE forums to the website post and have edited MrsO's post to http://pmrandgca.forumup.co.uk (was missing the "and" :-) ). It has also been requested to have the sticky functionality back.

I hope this helps and rest assured there is a lot of activity happening to improve the whole site.

Alan

aka Emis Moderator