After nearly 2 years with Prednisolone and Methotrexate I was finally getting the Prednislone down to the maintenance dose of 5 mg daily - the light at the end of the tunnel was getting closer... unfortunately my blood tests showed that this wasn't the case. Prednisolone dose is now set to 10 mg daily and the Methotrexate that apparently doesn't work for me is now to be dropped and I have to start with Mycphenolatmofetil - seems to e to be a pretty serious drug - with some possible drastic side effects - I already have various side effects from the 2 former mentioned drugs. Am just feeling a bit fed up with the whole process right now.
Anybody out there have any experience that they can share?
By the way - I don't have GCA in my head - it only presents itself in my body - I have no pain - a blessing for which I am very grateful and also I haven't turned 60 yet, so as I understand it I am younger than most who have this ailment?
Any input would be very welcome - especially if anyone is being treated with Mycophenolatmofetil.
Thankyou.
Hello Janet, sorry I am not medically trained but can I ask, why they are not treating you with just prednisone? Christina
No experience with mycophenolate, not sure I know anyone taking it. It is more commonly used by vasculitis consultants in other vasculitides - is that who you are under? I don't know if rheumatologists would use it.
All the reading I have done suggests that methotrexate is of little value in either GCA or PMR, except if it does change the way the patient metabolises pred. The overall results suggest it doesn't make any difference to longterm flare and/or relapses though when used for well over a year it may reduce the amount of pred slightly. It has no effect on the side effect profile.
I too probably have large vessel vasculitis in my upper body - judging by the original symptoms at least although noone ever did any appropriate imaging to find out. I know quite a few people on the forums whose PMR or GCA occurred when they were in their 50s - I was 51 when the symptoms started. Often what happens is that the doctors are so fixated on the old age guidelines of "over 55" that they fail to understand that while it is unusual in younger patient it DOES happen so fail to diagnose it until much later. The current guidelines say "over 50" - still doesn't mean it doesn't happen younger! The rheumatologists also seem not to know that there is an almost identical disorder which occurs in much younger patients - so if young and old can have it you would imagine there is no real reason why the middle-aged can't have something similar too!
You are by no means the first person to have been put on mtx and then a flare of symptoms has occurred at the lower doses necessitating a return to higher doses. I am extremely sceptical about the role of mtx - would it maybe NOT have flared had you been on a slightly higher but adequate dose of pred?
Hello Christina,
I haven't been on the Methotrexate all the time, I think it was started as a way of getting the Prednisolone dose down. The pred is a fast worker and the Methotrexate slow - as far as I understand!! In the beginning after the initial high dose (50mg) of pred. everytime we tried to get the dose down below 20mg my infection flared up again. So I assume that is the answer - but I feel the on-set of total ignorance on my part - donøt know much about this illness - even less about the drugs - all I know is that a couple of years ago I was energetic and healthy as a horse - now???????????????
Thanks for getting back to me.
Janet
Hi Eileen, you keep going on about mtx having no place in the treatment of PMR. Yesterday I read a paper written for the British medical journal that backs up your argument. Bmj.com clinical review on PMR. I think it's one page 4 or5 but whatever page it's on I have to ask myself why are consultants still prescribing it in contradiction to accepted clinical standards? All I know is I don't want it and whilst I have a question mark over my liver function (different problem altogether) I will argue that I can't have it. Christina.
Hello Eileen,
Wow you sound as if you have lots of interesting information on tap.
I live in Denmark.
Am recieving treatment from the Rheumatologists in Slagelse hospital.
I was admitted to hospital in the beginning - before the diagnosis, they suspected cancer and I had all sorts of tests - when they took a PET scan I apparently lit up like a Christmas tree. After that they gave me prednisolone and the day after I was already feeling more like myself again...that has passed since taking it for a couple of years the side effects have taken hold ... anyway...
I am also sceptical about this new drug, I haven't started it yet as I was only at the hospital yesterday. After I got home and read the paper that the doctor had given to me - my initial response was not positive.
Have spoken to him this morning and he tells me that there is only one alternative that he has tested me for and I wouldn't be able to stand it. Also he says that if this doesn't work I will be referred to a different specialist hospital. Feeling ever so slightly at a disadvantage - that sort of feeling when you just hope that they know what they are talking about 'cos they could more or less tell me anything - I can't argue with something I know nothing about.
Frustrating...
thankyou
Janet
Janet, slap on your wrist number one! It is very important for us all to know as much about our condition and how it should be treated as possible. Because if we are ignorant to our condition it allows clinicians to prescribe medications or attempt to deal with our illness as they think fit. Now that is great if you have a really good rheumatologist but how do you know if they are good if you don't know about your illness and its recovery pathways in the first place.
pmr/GCA (I don't know as much about GCA as I do PMR, but they are inflammatory conditions that thankfully are self limiting and the drugs we are given only mask the inflamation, they do not cure us. However the inflamation will burn out as and when it wants to and not when we magic it to, otherwise, that would be a cure! Some patients are luckly and it condition burns out quite quickly, 2 years but other patients the condition will be around for a lot longer and sometimes it will fizzile away for life. Therefore drs need to understand that the drugs And their doseages need to fit the level of inflamation that is there at the time and not attempt to fit the level of inflamation to fit the dose of drug that they want us to be on. Sometimes when our inflamation takes too long to burn out, that's too long for the consultants not for the condition, consultants attempt to try other drugs to control the condition so they introduce methotrexate, etc. in an attempt to speed up the recovery process. I have a reply on this thread currently addressed to Eileen about a paper written by the British medical journal that states all that I have said. My reply is currently with the moderators. If and when it is released look up the paper because it makes for good reading. Christina
Janet, can I also add that 2 years to be on prednisone is not a long time and as for being on 10 mgs that is not a huge, huge, huge amount to be on. Christina
Top experts in GCA and PMR would probably have accepted the dose you got to without mtx as acceptable. Fairly recent research has shown that even after 6 months at doses above 20mg there is still evidence of the GCA being active so that it would reappear if the dose were reduced any further. This is even though the patient has no symptoms and even the blood tests are normal. If you keep trying to force a reduction, then the GCA can become active again and you are starting from scratch each time. If you never get it properly under control then it will keep coming back - it isn't exactly rocket science though it seems to pose even greater problems!
Lots of people find the same as you but eventually get below 20mg after a few years. I feel rheumatologists are often too hasty in trying to get us off pred. I'm not alone in that - they see pred as something awful but don't stop to consider that the other drugs are not exactly jelly babies either and in combo they may cause even more trouble. The other problem that appears to not help at all is that they are determined to reduce in steps that are simply too big - smaller steps often achieves a fster reduction in the end.
Send it as a PM Christina - but isn't BMJ behind a paywall for ages? Or is it relatively old? This is actually what I said in the post I just wrote to Janet, I probably started just as you posted this.
We are slowly getting through to some of the medics in the UK that there is probably not a lot wrong with pred used carefully with very small reduction steps and they are now saying not to use more than 1mg drops and one is using the slow reduction spread over a few weeks that is similar to mine. The trouble is, so many are terrified of the damage they believe pred does - without stopping to think about the damage PMR and GCA do when not properly controlled. I'll accept the possibility of osteoporosis in 15 years time if I can live reasonably well now and be at a lesser risk of the truly nasty long term consequences of vasculitis.
Lucky you having a PET scan - at least they saw where your large vessel vasculitis is! More than we get offered in the UK!
But - since I didn't ask before when I had my mini rant about consultants who all want to hares when tortoises get there first - what sort of reduction plan have you been put on?
If you follow this link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find more links to another site from the northeast of England support group. This is full of info that will help you understand more about your illness. There is also another forum that works more like a virtual support group - we don't quite manage having coffee together online but otherwise it is a place to learn, rant, get advice in a more relaxed atmosphere than this forum (brilliant though it is). Speaking to others and hearing their experiences is very important in learning about what has happened to us as Christina says.
And the final link is to a paper about managing GCA and PMR from top UK experts. They quote a reduction scheme that achieves a flare rate of 1 in 5 rather than 3 in 5 as found with other reduction plans. Further down the thread are a couple of posts with the very slow way of reducing many of us have used to get to far lower doses than ever before. Even consultant rheumatologists are coming round to our way of thinking - that going apparently VERY slowly gets the patient there just as well as adding in other potentially nasty drugs.
Softly, softly, catchee monkey...
Eileen - thankyou so much for your help - just finding somewhere that I can "talk" to people with the same problem is wonderful and a huge relief. I was lucky with the PET scan - it was a last resort as they couldn't find out what was wrong...wish there was a great forum like this one though.
As for my reduction plan - it was very slow - non existent for a while after the initial drop from the first large dose the first week. I think though that the last hurdle from 15 to 5 has been too fast I was dropping 1,5 mg every couple of weeks - unfortunately as I mentioned earlier - I am at the mercy of those I count on to know what they are doing, and I am sure that they do for the most part - you have to believe don't you.. it is a beggar though as I partly feel so much "clearer" or different somehow as the pred dose has come down - unfortunately I can also feel the original symptoms creeping back.... what a pain!!!!!
Thanks anyway - I will check out the links you posted.
Janet
Hello again Christina -
Thanks - I have slapped my wrist - only a little slap though - I have really been trying to find out about this illness -I had never heard of it until I had it... if it was easy to get information I wouldn't be sitting in Denmark and finally be getting the relief of finding "others" in my situation in my old mother country! As soon as I was diagnosed I looked everything up that I could find here in DK - didn't really realise what having a chronic illness meant until I am sitting here 2 years later with the sinking feeling that I am stuck with it... and had no idea whatsoever that it would be so hard to get rid of. I am making up for it now though and finding out as much as I can - questioning this new drug - I think I will phone the doctor again and see if we can't wait and see if I get better just by upping the pred dose.
Thnaks
Janet
Forgot to mention - I have osteporosis - not a good combo with pred am under treatment for it and at my last test it has improved slightly.
Probably explains the thinking that I need to be on a low dose pred
Janet
Well done! To be honest I had never heard of PMR/GCA until I was diagnosed with it and even then when I researched it was so pleased that I would be rid of my PMR within 2 years!! Well, that's what all the info leads us to believe. But of course that is not the reality. As I said the reality is that the condition, GCA too will burn out as and when it's ready and not to the tune of a consultant.
I am sure a good consultant here would still be dealing with you with preds only, after all it has only been a couple of years! (Only, what a word to use! But you know what I mean) also although I'm not medically trained I do believe, (not based on anything other than intuition), that switching patients from medication to medication does no good. That's why I'm a firm believer in leaving patients on preds (unless there is a medical reason not to) and hopefully the preds will work out in the long run, after all the reason why many consultants change the men's is to speed up the recovery rate, and that simply cannot be done. Good luck Janet. Christina
There is no wonder at all you have problems dropping like that. No reduction should be more than 10% of the current dose - and oncve you get below 15mg even that is likely to be too much for many patients with PMR or GCA. It is a very different matter from other illnesses where they are using pred for inflammation, most of them it kills off the inflammation and then you just reduce fairly gradually to allow the adrenal glands to pick up their job again. In PMR/GCA the inflammation is chronic, the underlying autoimmune disorder may still be active and you have to find the lowest dose that manages the symptoms until the underlying disorder burns out - which it does in most people sooner or later.
You need at least a month at each new dose, preferably longer to make sure it is still enough to control the symptoms. Some doctors keep patients at 10mg and 5 mg for months, it allows the body to catch up.
To some extent the doctors know what they are doing - but it is something of a fight to get them to slow down with the reduction, they are so desperate to get the patient off pred altogether. But it is the only thing that manages the symptoms successfully and reliably. I am very lucky, my GP is the one wanting me to go even more slowly! I'm not in the UK either - I live in northern Italy.
Yes, pred causes "brain fog" for many and it does go at lower doses. However, with a more sensible reduction plan you will get back to a lower dose.
There are things to combat the osteoporosis and they have far less unpleasant potential side effects than mycophenolate. They are used enough by orthopaedic specialists. I don't approve of them being used "just in case" - but when you really do have osteoporosis then it is perfectly reasonable. Plenty of people are on both pred and "bone protection". I have been very lucky in that sense, calcium and vit D has been quite adequate and my bone density is unchanged. Being on too low a dose of pred to manage the symptoms just leaves you with downsides with no benefits - and if you are less active that is the biggest risk factor for osteoporosis there is.
What are you on? Nefret on this forum has been on denosumab for the last couple of years and all is back where it should be - and she will be on pred for life.
I think you misunderstood - I do have osteoporosis but am being treated with Alendronat - that is oddly enough one of the bright points in this whole case - I had no idea that I had it, the only reason that I found out - before I found out the hard way - was due to being checked when starting the pred treatment. I have been taking Alendronat for well over a year now anhe trick.d it seems to be doing t
I absolutely agree, I had the feeling that it was just going to fast...it has after all taken this long to get under 20 -
and finding this forum and "having a chat" with you made me realise that I must "make a stand" so I phoned the hospital and asked them to get the doctor to give me a ring when he had a spare 5 minutes - the end result being that I am not starting this ghastly new drug until we at least see if it looks better when I have had a couple of weeks with the prednisolone back up to 10. Thankyou for helping me find my backbone.
No, I did realise you were on something. What I was saying is that there are drugs for dealing with loss of bone density even if you are taking pred - it is not a reason to force a patient to a lower dose than achieves the required result. Some doctors will try to get patients off pred because they are heading for osteoporosis - and the result they achive is that the patient is immobile because of the PMR which is a high risk factor. They also tend to panic and hand out bisphosphonates like sweeties rather than do what you had, a dexascan. Your osteoporosis is obviously pre-existing and in that case I have no problem at all with "bone protection" medication being used then. It's the "just in case" attitude I have a problem with. Many patients have problems with alendronate - it is nice to hear of someone who doesn't!