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

Posted , 7 users are following.

Was diagnosed originally back in 2007 - and although I have never managed to get off the steroids completely I was down to 1 mg daily and was definitely living life to the full - but have always listened to my body and have been kind to myself - resting when necessary but taking exercise and eating healthily - my previous skirmish showed me how to manage my fatigue and pain/discomforts and retain a good quality of life.  Then suddenly last week-  3 days  after a superb family holiday  I suddenly can't move again.  My GP was wonderful - apart from having to get a taxi to surgery and having to somehow sit in a waiting room for over an hour - she managed to get me booked for a blood test that day, arranged a hip x ray just to make sure she wan't missing anything and then upped my steroids to 25mg plus pain relief.  So this time within in 3 days of onset I was having steroids which many of you know is such a relief.  Yes my CRP was 129 (but my hip x ray is  all good) so now i've to to start all over again!! I am frightened and don't know if i can go through it all again - i hate the affect of prednisolone and the restrictions and frustrstions all again.  You were all such as good support system last time - I'd read the forum posts for hours when i couldn't cope with much else, so I hope to gain your support again this time - some of the contributors are still the same I see!!  - hope that doesn't mean you have had relapses yourselves.

Any tips on handing relapses - am I likely to get through this episode more quickly and be able to reduce more effectively.  My family keep reminding me i did get back to normal last time and i will again but i must admitt i am feeling quite low at the moment. Are there any advances in the research and treatment over the last few years.  I shall look forward to any replies.

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  • Posted

    Oh Gill - what a disappointment for you. I really feel so sorry for you. Two ladies who used be regulars on here, Betty and MrsG (not sure, I think those are their names here) also have had PMR twice and are regulars over on the forumup form linked to the northeast support group. Both of them are now pred-free after their second lot but active over there rather than here - this forum went through a very painful re-vamp a couple of years ago and was almost unusable for a while and lost a lot of the old members (not in years of age, prescence here I mean).

    I don't think there has really been much change in research and no change in treatment: pred remains the mainstay. What has changed is that we between us have realised that the slower you reduce the better - I don't so much mean in terms of taking a long time but in the size of the steps taken. We encourage people to reduce in 1mg steps if possible but even spreading that one mg over a few weeks - this seems to avoid the pain of steroid withdrawal which is so easy to mistake for PMR pain. You can still reduce steadily at 1mg a month. It has worked well for a lot of patients and even consultants are starting to try it out - and finding it works very well. Ask if you want the details.

    MrsK is still here and in the meantime, together with other ladies who all met here, has set up the northeast support group, got their website up and running and registered it as a charity - that may have been on the horizon during your first go. There is also a national charity with their own forum. MrsO and nefret are here - not because they've had second goes but because MrsO has only recently got to zero and Nefret still has something resembling PMR, but they are all here to provide support for everyone else.

    What a shame they didn't keep an eye on your blood levels as well as leaving you on 1mg of pred - they might have been able to head it off at the pass ;-)

    Follow this link to another post and that gives you links to the newer forums:

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    as well as a superb site with info and updates on all sorts of PMR things (the northeast support group site). There are now a load of support groups - there may be one near where you live and you might like to join. The forumup forum acts as a support group on the internet - all sorts of things get talked about there! PMR/GCA problems, tips, tricks, pets, photos, holidays and general daftness as well as being a place to vent your fury when it all seems a bit much. See you over there maybe?

    • Posted

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

      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.
    • Posted

      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. 

    • Posted

      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.

    • Posted

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

      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.
    • Posted

      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 :-)

  • Posted

    Oh - forgot to say: both Betty and MrsG say their second bout bore little resemblance to their first. So nothing to say there really except "wait and see"!
    • Posted

      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.

       

  • Posted

    Having been diagnosed about 5 months ago & having finally gotten adjusted to pred I can only say that I think with the onset of PMR a dose of depression comes along with it.  It seems that with the pred the blue meanies fade away after not too long.  Good luck to you.
    • Posted

      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!

    • Posted

      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.
    • Posted

      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! 
    • Posted

      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.
    • Posted

      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!! ;-) 
    • Posted

      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.
    • Posted

      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.

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