Whatever next!

[Janbu]

Admitted to hospital today with lung infection on left side and pulmonary embolism on right side! I got increasingly breathless over past few day days and my rheumy picked up the signs of a chest infection but this am everything went pear shaped. I'm only just coming to terms with GCA/PMR diagnosis. Rant over , feeling very sorry for myself.

[Celtic PMRGCAuk volunteer]

Oh, Asdip, I'm so sorry to hear what you are going through, and so soon after your PMR/GCA diagnosis, as if that wasn't quite enough to cope with. I'm not surprised you're feeling down, but the important thing is that you have been diagnosed and are being treated promptly, probably with blood thinning meds and antibiotics. I hope you will soon feel much better.

[TigerEyes]

Hi Asdip

Sorry your not feeling very well but I'm sure you are in the right place and getting treated properly. I have just come out of hospital myself after pneumonia and although I did feel very I'll for a while after treatment I soon started feeling better and I'm sure you will start to feel better soon. Take care Ann

[Dovelady]

Feel free to rant. You really have had a rough ride. Hopefully this morning things are looking and feeling a bit better. Get well soon, the dogs need you home.

[5lupins]

Hi, many good wishes from Yorkshire. Hope you soon feel a bit better. Take care Jen.

[35bump]

Hi my thoughts are very much with you. Coping with the shock of the diagnosis and then rushed to hospital , its a lot to bare so go ahead and rant

[Hidden]

So that sore calf WAS a DVT. What rotten luck. One of the adjustments I had to make was to accept that I have a very serious illness in GCA/PMR. It takes time, but denial just keeps us stuck. I can see what a no-nonsense trouper you are, but you must be very kind to yourself and accept that you have been/are very poorly. It all gets better in time but you must have a good moan and some tears in the meantime!

Get well soon xx

[Janbu]

Yeah, it would seem that I did have DVT but I had a Doppler and nothing showed and soon after the pain in calf diminished. So as well as juggling steroids I get to play with warfarin...I am trying to think of positives here...oh. Yay, I can join another forum and meet some more lovely people. Seriously, this has been a huge shock but there is something very comforting to be able to yell into the ether and get complete strangers giving moral suppor. Ill stop moaning but the tears are still evident. I have a view of the sea from bed and sun is almost up...new beginnings better attitude!

[Judigardener]

Get well soon. Prayers from me - I'm an Anglican priest with PMR.

If you need to stay on blood thinners ask about alternatives to Warfarin. My OH is on Rivaroxaban. There are advantages and disadvantages to those kinds of meds.

But - as others have said - you've been diagnosed, help is at hand and you will get to feel better.

[PMRpro Ambassador in reply to Judigardener]

I wouldn't go on the new alternatives until they find an antidote - having a serious accident and requiring pints of blood until I stop bleeding doesn't appeal. My husband has been on warfarin for years (he has a protein C deficiency so is at a high risk for DVT and has already had a femoral one) and I have been on sintrom (warfarin variant) because of atrial fibrillation for 3 years - neither of us has any problem at all. I have discussed mine with the cardiologist - she agrees with me.

[Janbu]

You are absolutely right, I discussed this with my Rheumy and she said they didn't have the antidotes here and stuck to warfarin as it was easier to manage especially with steroids thrown into the mix.

[PMRpro Ambassador]

It's like buses! Nothing for ages and then several come along at once!!!

Someone on another forum had a PE recently and gave me cause to look it up. There is a retrospective study that showed there is a 3-fold increase in risk of PE in GCA patients in the first year after diagnosis.

This is obviously something that needs to be included on the information on the forums - because I have not heard anyone mention having been told it before. It is suggested that all GCA patients take low dose aspirin despite being on pred - but I'm fairly sure that few do and anyway, to my knowledge, aspirin doesn't protect against DVT.

Do hope your recovery goes smoothly - nasty things PE and it is so good it was caught early. Get well soon.

[PMRpro Ambassador in reply to PMRpro]

Addendum: aspirin is better than nothing in preventing repeat DVT (by a factor of 1.5) but by no means as good as roper anticoagulation. Aspirin, it seems, does work quite well used AFTER 12-18 months treatment with warfarin.

Think I'll stick with the rat poison though - hasn't irritated my stomach in combination with pred which there is the risk of with even low dose aspirin.

[jinasc in reply to PMRpro]

I was immediately put on Aspirin 5 days after the GCA was diagnosed.

[Janbu]

I am allergic to aspirin so was never going to go there. I found it interesting that there is a threefold increase of PE in the first year of GCA diagnosis . There is still so much to learn about this disease! Thanks for your thoughts, words of wisdom and encouragement.

[Classicmichael]

I really feel for you as two years ago l was diagnosed with first GCA followed by PMR.

This is such a shock to take in and it's not until you are a few months into it that the constant fear of losing your sight begins to fade a. Bit.

I also had a PE whilst in hospital two months ago and was discharged home with 8 days supply of Klaxine to inject in my tummy followed by daily warfarin.

Again this is a massive shock to take in and the first thing you should do is congratulate yourself for surviving such a serious attack on your body.

My weekly blood tests are a bit of a chore but somehow life has changed for me and l am so grateful to still be here.

Be kind to yourself and rest when the body tells you to and if the steroids wake you at Dawn go into the garden, listen to the birds and enjoy.

Use the wonderful support of the lovely people on this forum and you will get through it.

Mike

[PMRpro Ambassador in reply to Classicmichael]

The weekly blood tests are temporary - in the UK they stretch them out to monthly and sometimes longer if you are well controlled. Here both I and husband have monthly-ish checks which means nipping along to the hospital for blood to be taken, no GP service here! We pick up our results late morning and decide whether I need to see the GP or at least ring her - he's managed his warfarin dose ever since he was put on it. Sometimes out of the blue my INR falls out of the range - often a change in routine does it but mostly it hovers at an acceptable level.

[Janbu in reply to PMRpro]

That's good to know, I'm getting a couple of mixed messages here, one Doc saying warfarin for life another saying about six months. My INR has not shifted up yet, I had another PE two days ago but definitely feel improvement today, as O2 levels are stable without extra O2. Fortunately the GCA/ PMR side of stuff seems to be happily sitting in the background whilst I jump through this hoop. My Rheumy visits daily and is very upbeat. On on! Like you, all lab work is done in the hospital, which is not too far from where we live. If I end up a lifer I may well invest in my own INR machine, I'm a sucker for a gadget!

[PMRpro Ambassador in reply to Janbu]

David borrowed a machine for a while - he was diagnosed just before a business trip to the USA so hadn't got to the stage of weeks between tests so the lab lent him one since he was a colleague. It was very convenient and we did consider buying one - the machine itself isn't too expensive, but the disposables are! That's where they make their money. Not sure if they provide them on prescription in the UK (they should since it does save them money) but we don't live there anyway and it would mean shelling out ourselves - and the hospital is free!

David is on it for life, no questions, as he has a protein C deficiency and that could cause a clot at any time. My a/f isn't going to go away so the same applies for me I imagine but given the choice where there is dispute I'd certainly choose to take it for life - on the basis I suspect the risks taking it are far less than not taking it and it really hasn't bothered either of us. If you take pred it's a doddle in comparison In fact - maybe it contributes to my weight loss? Who knows - I'm on sintrom, bisoprolol and losartan and since I started taking them I've lost all the pred weight - I won't say without trying since I am very good about low carb 95% of the time but perhaps they help! Having lost so much weight my BP on meds is on the low side - very rarely above 110/70 and often less. It isn't all bad.

Stable O2 without the mask is a good bit of progress - were you really poorly at any point? I think that , other than cancer patients, PE patients were amongst some of the most poorly-looking people we saw in the labs.

[Janbu in reply to PMRpro]

I was very poorly at times which scared me but what a difference a day makes, today I am pain free, had a shower and planning my first escape tunnel, with the blessing of the Rheumy who says I can carry on with the claxane injections at home and come in for labs until the required INR level is reached.... She is also looking at bone density/ saving drugs, which I know nothing about at all, I bet you have pointers? She wants me to to read up on my options.

NICE has just completed a study about the introduction of INR testing machines and thinks it would be the way forward...good news for UK people.

[PMRpro Ambassador in reply to Janbu]

Well - the basic option, to be started immediately with pred is calcium and vit D supplements while waiting for a dexascan. Then, depending on the results of said dexascan - possibly you add in a bisphosphonate. I don't quite get why she's telling you to look at the options: NICE guidance is that you have to work through the list from first line up and only get to 2nd and 3rd line if you fail the previous level, either because you have something that contraindicates it or it makes you ill.

No 1 (because it is the cheapest) is alendronic acid - not to be given to patients with a history of gastric problems or who are unable to sit/stand upright for 3/4 hour after taking it on an empty stomach and with a large glass of tap water (no mineral waters, even well water can mess it up apparently)

No 2 is risendronate - supposedly better gastric tolerance, not allowed with renal problems

No 3 is stronium ranelate - not allowed for you, you have a history of venous embolism now, also not allowed if your family has a cardiac event history.

Then you get to the fancier, more expensive options which include Forteo, an artificial parathyroid hormone that actively builds bone and is used in severe cases, and denosumab, a monoclonal antibody which is classed as a bisphosphonate but works in a totally different way. The last 2 are injections once or twice a year (can't remember exact details).

Depending on which of the first you are given it is a tablet once a week, once a month or I think there is also an injectable version. Taken on an empty stomach an hour before food or bending at all.

None of them should be given until your calcium and vit D levels have been checked and sorted out if they aren't right - they don't work otherwise and you can take the tablets but they won't improve your bone density. Calcium is rarely low, vit D is low in about 80% of Brits!

Personally - I will take one when they show me a dexascan that shows I need it. After nearly 4 years on pred my bone density hadn't shifted so you could see. That was on calcium and vit D. I'm not alone - Celtic never took anything (by mistake) and is fine and lodger had problems with calcium causing grit in joints and at 70-something her bone density is perfect - but she has been on HRT for years.

Some one said they called the National Osteoporosis Charity helpline and the nurse she spoke to was fantastic, explained it all.

nos.org.uk/

By the way - if you go home: REST!!!!!!!! Remember, in hospital you are being waited on hand and foot (well, sort of). At home there are stairs and TEMPTATION. If you want a cup of tea - you will get up and stand around and carry things and... It is far harder work. OTOH - you should be able to sleep And pinch hard when you do your injections - I forgot a couple of times and the bruises were humungous and took 4 or 5 months to fade!

[Janbu in reply to PMRpro]

Thank you for that. I think the reason she is giving me options is because it's me who pays, there is no free medical care here .

My escape tunnel collapsed, I'm in for another day as the INR is still only1.3 and upping the warfarin tonight for one night.

I'm taking Vit D and calcium and my bloods for that were in normal range , so hopefully a dexa scan will show all is well and I can avoid the extras, also I am only just into menopause at 61 so I think I have some added protection there.

My belly is indeed a patchwork of purple and pink with no signs of fading, not the best look but well hidden as bikini days are long gone.

[PMRpro Ambassador in reply to Janbu]

Sorry - didn't remember you were somewhere outside the UK. Whose hospital are you in? Or are you back home after your "cruise"

The order of use is still much the same though I imagine - it's the order of price too wherever you are! And even private medical insurances have their rules about what they reimburse. I have no idea what is covered here in northern Italy - I do get Lodotra (Rayos in the US) which is a delayed release form of pred which you take at night and it releases early morning - no morning stiffness. It costs up to £75 per month depending on the dose and isn't approved in the UK - I'm very grateful I live where I do since it costs me about £3 a month in prescription fees!

That is a very low INR after a few days of rat poison - hope it decides to go up a bit faster very soon.

No, I don't want to wear a bikini either but it did look awful!!!!!!

[Janbu in reply to PMRpro]

I'm back home, in a private hospital in St Lucia and we have no health insurance, just a pot of money for medical emergengies. When we first moved here we enquired about it but as we were both over 55 we were too old apparently , and ex-pat insurance was out the question, so costly. So I think I will see if there is any bone density loss and if I'm lucky avoid the meds and stick to calcium and Vit D. It will only be another three months until I'm down to 10 mgs of pred a day...a little gamble!

[PMRpro Ambassador in reply to Janbu]

There is mixed evidence as to whether higher bone density is protective for hip fractures. Or, put another way, having a low bone density doesn't always mean you will break a bone. There are a lot of other ways of avoiding such eventualities but I'll not go into them here.

Alendronic acid is cheap - and I mean cheap. If it doesn't disagree with you there isn't a problem and for lots of people, used properly and carefully it is fine.

So - hope you get home tomorrow - because that would probably pay for several years of AA!!!!!

[30048]

Allow yourself the luxury....of feeling sorry for yourself. That is. Sometimes it helps. Hopefully you have good doctors and they will fix you up in no time. My prayers.

[Hidden]

Asdip, sorry to hear about what has happened. Just a quick thought, have you been checked for Anti phospholipid syndrome ( APS, also known as Hughes syndrome). It is an auto immune disease and often goes hand in hand with other auto immune diseases. I think Mick T on here has APS as well as PMR/GCA.

I hope you recover quickly and get home soon.

[Janbu in reply to Hidden]

Bloods for that have been taken and sent to Miami, I should be able to rule that out soon. Hope so anyway, I could play scrabble with all these medical acronyms!