Relapse after 7 years! Back for your support again.!

I have wondered why there are two forums.  I would seem so much better the other way.

hi, been to rhumy today and he says I can start on lodotra next week after my foot scan, he was lovely and wanted to know why i particularly wanted to go on them as they really do the same as the others, i know you said you had lost weight since you had been on them, do you know why and have you noticed anthing else. when you need something toeatwhen taking them would a yoghurt be enough, or a slice of bread and butter, please let me know . thank you.

Don't quite get what you mean by "the other way".

There are actually 3 forums. This was the first, set up by some doctors in the northeast of England to provide advice and information for both patients and healthcare workers. It has hundreds of forums, if there is an illness it very likely has a forum on here - plus a few forums for rather less defined subjects.

The first PMR/GCA support site was the one associated with the northeast of England support group - there was already a support group on Scotland and one in East Anglia (I think) but the northeast one and then its info site was brought into being by MrsK. A few years ago a few members felt an internet forum would be useful for people who couldn't get to one of the support groups that were beginning to start up across the country and the forumup one was set up, a lot of the work being done by a lady in France who knew how these things worked. Then later the national PMRGCA UK charity (it is separate from the northeast one, they are all affiliated) decided it wanted a forum of its own. I won't go into that here.

When patients with PMR or GCA google it it is most likely to be this forum on patientdotco that comes up towards the top of the list - because it has been used most. All members of the national charity are told about theirs. The forumup one is a bit different - there we behave as if we were in a support group meeting, it is very informal and covers a lot more than "just" PMR or GCA, although you would be surprised how much of it all boils down to how PMR or GCA affect our lives. Many of us have become close friends as a result and a few weeks ago a lot of us turned up at Chertsey for the support group meeting run by MrsO - we al met in the flesh for the first time. Great fun was had by all!

I tend to suggest it because it works slightly differently and you can have a proper "conversation" with the posts coming up in order even when someone is picking up on a point earlier on. This used to - now it is quite confusing and even when you follow the link from your email notification it doesn't always make sense. All a matter of taste I suppose.

That's a potted history - but without the 5 ladies who got together here, we wouldn't have any of the rest. The northeast group in particular work to support research in a practical way by fundraising and using it for those sort of activities and have also lobbied MPs to ask questions. 

I thought he'd said no? Or am I thinking of someone else?

I lost weight because I'd been on a version of pred that had caused me to put on a lot of weight. I'm also much more active than I had been part of the time when on it simply because other health issues were sorted out but I did start to slowly lose weight without increasing activity. All the side effects from the Medrol have gone - skin, hair, weight have gone back to more like normal. I feel well - but it is impossible to tell if that is the Lodotra rather than the Medrol or whether the PMR has gone. I'm reducing the pred steadilly to levels I've not been able to before but again there is no way of knowing whether that is Lodotra or no PMR.

I have only seen the instructions for taking Lodotra in German. You must take the tablets at 10pm, that is fixed. You must also take them within 3 hours of having eaten - I eat dinner at 8pm, very rarely any earlier so that is perfect. It says on the German instructions that if you haven't eaten in the previous 3 hours you should eat a slice of bread and ham or cheese or something similar. I suspect that just a yoghurt is not enough - there must be certain conditions present in the gut for the tablets to break down and release the pred 4 hours later. They don't QUITE do the same as the others - they make sure the pred is there at the right time to minimise the effect of the inflammatory substances being shed into the body. Since they are there to "turn off the tap" so to speak, they don't have the flood to clear up that would be there if they arrived later. It is hoped that that will lead to a lower dose being needed. I certainly was able to drop from 20mg of medrol to 15mg of Lodotra overnight - and got a far better effect.

Beware - if you eat so early you will need that "supper" bear in mind that that is probably at least 150 calories. If you ADD that as an extra meal you will put on weight, Lodotra or not. You must be careful to take it OUT of your daily allowance, not add it to it. One plain biscuit a day is about 70 calories and is enough over a year to add a significant amount to your weight. 

And please don't assume it will be as good for you as it has been for me or Barbara - we are all different. If it isn't all you have built it up to yourself to be you will be disappointed. Wait and see and then decide if the £100/month is worth it - I'm assuming you are getting it privately? But good luck and keep us posted. I would support everyone at least getting the option to try it, especially if they have problems with other forms of pred. But I don't think it will happen yet.

Thanks for the 'potted history' Eileen.  It was very informative. 

Thanks for the info. I was under the impression HealthUnlocked was a spin off. I sometimes have difficultly getting into that one. Don't know why. Never underestimate the power of women. You 5 have achieved amazing results.

HealthUnlocked is the most recent one yes.

I'm not one of the 5 originals - can't claim that sort of reputation I'm afraid. I'm a relative late-comer - probably one of the few with a medical science background and one of the even fewer with time to really get stuck into this "job". It keeps me very well occupied in my semi-retirement here in Italy :-)

Thank you EileenH, Nefret and Mrs O so much for your welcoming comments again.  I am at that stage of so much fatigue and exhaustion from pain plus buzz of sudden increase of steroids that i am not sure where to put myself or what to do with myself but I know that will improve - am just trying to rest and  listen to music to stop my mind buzzing - your comments are so reassuring. Hello to any of you that might have known me back in 2007. No doubt i shall be in touch again soon.

 

You're quite right Mary - "depressive mood" is very much a part of PMR as with many autoimmune disorders and is one of the presenting symptoms. For many people the pred helps - but one of the 82 listed side effects of pred can be: "mood swings"!

Really a case of swings and roundabouts!

I can vouch for that.  During my first few weeks on pred my mood swings were so upsetting I wasn't sure I could take it, but in time they faded away & I became adjusted to pred. (You were quite encouraging at the time.)  I told my rheumy I was gong to write the book on the side effects of pred & he smiled.  He is very young, tolerant & has a good sense of humor.  That's a good thing. While reading the forums I am surprised at the attitude of many doctors & wonder if it does not exacerbate the condition.

I think  you are very probably right - when a doctor is dismissive of your pain and disability and doesn't appear willing to listen or help it is very upsetting. For anyone who has suddenly been left badly handicapped by PMR type symptoms that do respond to pred and then a doctor pooh-poohs that diagnosis and is unpleasant about how to deal with it I'm sure it is very stressful. I was lucky, the consultant was a prat but a different GP in the practice listened and wrote the prescription. She wasn't much help after that - she never had any time to listen to problems or tell me anything about PMR. So being a big girl and having done a degree in physiology alongside medical students I reckoned I can read a medical textbook or publication as well as most of them! I may not understand some of the deep science that isn't my field - but you're never too old to learn! 

You offer an enormous service & help so many of this forum. Very generous of you.  Yes, I had a rather rough start with a GP that I kept requesting  blood tests from, an internist who after ordering many blood tests said I was anemic (she graduated from Harvard), a neurologist (more blood tests) said I had lupus & finally the rheumatologist I have now & a new GP.  I mention all of this because I think it is a tough road for many to find some answers & many times you just have to be tenacious & listen to yourself & question authority.

It didn't occur to her to ask WHY you were anaemic? Autoimmune disorders often go along with anaemia - or rather the other way round! Sometimes I really wonder which lectures they lisened to!! ;-) 

On top of the diagnosis which w/o persistance I am not sure I would have gotten, it has been an interesting education into doctors & their attitude towards their profession &  their empathy for their patients.  Needless to say, many are disappointing, but others have made up for it.  Yes, my rheumy mentioned the relationship between PMR & anemia later.  After I had suffered through iron pills for a few months. I did ask both of the other specialists why all the blood tests if no conclusions were to be given. They were both defensive.  My thought was they did not find something obvious & did not want to deal with the unknown area.

It is a common misunderstanding that tests have to be positive to get information - a negative result is also of importance. It can rule out something or, in combination with other results, suggest it is x rather than y. 

Do I assume you are in the USA? That brings in another aspect. The form of healthcare practised in the USA means that doing loads of tests, scans and procedures means the bill they send to the health insurance can be bumped up. That's why different doctors don't share results - they repeat things to be able to bill it them themselves. This can be bad for the patient as they are exposed to far more radiation from x-rays, CT scans and so on and it is certainly bad for their pocket - because this is a very expensive form of medicine. Insurers know they will have to pay out a lot if you are ill and set the premiums high to compensate - they are not a philanthropic society, they are there to make money, they need to take in more money than they pay out. That is why they are difficult about insuring the chronic sick who will consume far more than they pay in. 

I'm not arguing the point about private insurance versus state funded medicine, private can work better than it does in the USA without spending the vast amounts spent there, but presenting a few facts as to why some things happen in that sort of system. The German system was similar - many doctors have been found to be doing unnecessary procedures so they could bill for them. I have no doubt it happens in most private systems.