I posted my details on the fixed thread, but just to recap, have had PMR for 5 years and was down to 5mg Pred daily. I was then just before Christmas diagnosed with GCA and am currently on 40mg.
I'm feeling very shaky, weak, slightly removed from the world and with awful night sweats, - I'm having to change my nightie 3 times a night!
My question is, - is this caused by the level of Preds or is it a symptom of GCA?
Hi Susanne, I am relatively new to this site having just been diagnosed with PMR in November. There are more experienced people on this site who will be only too glad to support you, answer your questions and give advice when needed. They are a great bunch of people. Hang on in there and someone will answer you very soon. All the best.
Pat
Hi Susanne, I'm so sorry to hear of your latest developments. Mrs o will hopefully answer you soon as I know she had GCA, and with increased levels of preds noticed a change. There was a thread on this forum only yesterday or the day before from a member who was asking the very same questions. Mrs o waded in then with some very comforting advise, so Susanne hang on in there, someone will answer soon. Christina
Hi Pat.
Thanks for your reply. Yes, this looks like a very supportive forum.
Hope you are doing ok with your PMR. I'm a relatively old hand at that, but the GCA is all new to me.
BW Susanne
Hello Susanne
I was diagnosed with GCA last September. I was put on 60 mg of pred up from 15 which I was taking for my PMR. I have had all those symptoms you having. So it comes with a high does of pred. I had no energy and felt very weak. I also use to get hot flushes when sweat dripped of me. It is not nice but need to get the GCA under control. I am down to 20 mg of pred now and almost back to normal. Having GCA will make you feel weak and I could sleep almost 24/7 . It will get better it took me about 3 month . So hang in there and rest as much as you can .
I have had GCA for some years now and on occasions have been on as high a dose of prednisolone as 60 mg pd, and like most on this site, have fluctuated the dose up and down. I have not suffered night sweats as badly as you, but do find that I have periods of extreme heat. These have not varied with the prednisolone dosage so I have concluded that they are a consequence of the GCA rather than the prednisolone. My experience very much leads me to take the dosage that provides best relief and not to worry too much about the side effects, and also not to be too influenced by doctors constantly trying to reduce the dosage.
Thanks groovy_chick. That's sort of reassuring, at least there might be an improvement when the Preds are lowered. Back to work Monday after 2 weeks off, - that should be interesting! :-)
Thanks Christina.
Thanks Audrey. Useful knowledge. Hope I don't have too many flushes at work, thought I was past that!
Susanne it will get better I a sure you. I felt awfully low sometimes but doing great now. I was off work 4 month, only just returned to work 2 weeks ago. So you are doing amazing going back after 2 weeks. There is no way I could have done that. Neither would my doctor nor the matron let me. I suppose it is all depends what your linecof work is. Good luck with your GCA journey and all the best .
Susanne - I'm sorry, I can't remember if you have said where you live but GCA is covered by disability legislation in the UK so make sure you have your union and occupational health onside. You have a serious illness in itself, taking pred at those levels is also asking your body a lot.
I don't know what you do but both GCA and pred cause "brain fog" and there may be times when you are not thinking straight. If you are in a job where that would matter do make sure you have discussed this all with your employer. I think you should be signed off for longer - because rest is an important part of the treatment in GCA as well as in PMR. Others have been scared to tell their employer, but when they did they got a lot of help, both in terms of time off and arranging working conditions - for example, shift working is a no-no with high doses of pred.
Yes Eileen I'm so pleased you thought of that issue. After 2 weeks off of work, does not your gp need to sign you as fit for work? If so, you may find that if you went to your gp they would do precisely that.
christina
Yes, I meant to say it could be either or both - it depends on the person! Very helpful I know...
I was not actually signed off from work, I just happened to book 2 weeks off over Christmas. I did have days before then when I wasn't well enough to go to work, but hadn't been diagnosed at that stage. So I will just have to see how I manage. Am due to see consultant on Thursday.
I work as a PA in a national charity and it keeps me on my toes, but my love of the job keeps me going.
S
Eileen, thanks.
I live in Surrey and work full time as a busy PA for a charity that I am totally committed to.
I'm going to see how I manage next week and if it's too much, I might ask my GP to put me on half days for a while.
The brain fog is definitely there, - I feel quite spaced out most of the time. Went to fill my car with petrol and stock up on a few work lunch items this morning and came back a "quivering wreck"!
No ma'am! Apart from anything else your GP needs to know immediately!
In many jobs you would be entitled to your holiday back - I do understand the difference with a charity but your annual leave is NOT there to cover you being ill, that is a very different scenario. If you want to donate your time that is one thing but you do need to have rest in order to recover from this. GCA is a serious illness, it is not a cold. You may feel not too bad while at home but the commute and the job may make you more ill than you already are. It really is not worth the risk.
Some time off and a staged return to work is what is called for. It is not a case of "managing" - you could end up far more ill than you already are and then they would HAVE to "manage" without you. Possibly for longer than they would have to with you being off sick now.
Charity it may be, but they nor any other employer will erect a plaque when you die (not that I mean you will do so from GCA!) saying she died in the service of ...
You won't have read my other response - if you can't manage a filling station I don't see how you will be much use at work!!!!! I don't think it is a GP decision as to working part time - usually you are either fit to work or not fit to work. That is an arrangement to come to as a graduated return to work involving OccyHealth and you.
Who are you being referred to? There is a fantastic chap at Ashford Middlesex - I'd travel miles to see him. There is also an outstanding support group at Chertsey.
Susanne, i am very pleased that you love your job, but Eileen has set the brain working in me.
firstly, even if you are on holiday from work and you fall Ill you are entitled by law to have the time ill reclassified as time off through illness and therefore the days that you were ill are then banked back to you to take in holiday, within that tax year.
also charities are not exempt from employment law and you are obliged to inform them should anything happen that could compromise your work. I'm sorry but you must go to your Dr and be signed off work for however long it is because once work knows of your illness they are breaking the law if they take you back.
following any time off work your employers will have to conduct a back to work interview and at stage even if you are fit for work, following a drs back to work certificate, they still have to put in place a working practice that adds your recovery. Christina
Being on a high dose of pred does also compromise your ability to make decisions - it is an instant get out of gaol card for jury service by the way!
However much you love your job, however committed you are, you have to think outside that box. I struggled to work on a dose of 15mg pred for PMR - I am a self-employed translator and I would read texts several times to be sure they were correct.
it isn't just for your benefit that we are saying this - it is also for your employer's benefit. They won't be very pleased if something were to go wrong - and, I would hope at least, even less pleased if you made yourself even more ill.
Hi Susanne
I'm so sorry to hear that you have succumbed to GCA after 5 years with PMR - what a blow.
As for whether your night sweats are "a symptom of GCA or the high level of Preds", the answer really is both! Pre-GCA diagnosis I used to wake up in the middle of the nigh soaked in sweat, obviously a low grade fever, and this is a fairly common symptom of GCA. Once on 40mgs of Pred, the night sweats improved but were replaced by sudden surges of sweating during the day, weirdly very often in the middle of a meal. At the time, I put this down to the high Pred dose, and I have heard many others complain of this Pred side effect since. If you drink coffee, it can help if you cut it down or even out, I gave up all caffeinated drinks, including tea. Alcohol can also aggravate the situation.
As for feeling "shaky, weak and slightly removed from the world", that sums up exactly how I felt, and only the other day I answered someone here saying that I lost a lot of crockery due to the shakes at the time. I also lost all ability to concentrate and felt very emotional over nothing.
I hope it helps to reassure you when I say that all these side effects improved as I reduced the steroid dose. Just keep telling yourself that horrid as they are, the pills are protecting your eyesight and reducing the inflammation in your body to prevent more serious events.
We always feel very concerned for those who have to continue working with this illness, especially as our bodies need as much rest as they can get in the early days, and it is vital that we avoid as much stress as possible - PMR loves stress. Those we come across with GCA in particular have found it necessary to take time off whilst the steroids do their job of controlling the inflammation, and then return to work on a part-time basis initially. The more you do, the more difficult it will be to successfully reduce the steroid dose.
By the way, whereabouts in Surrey? I'm on the border, in Ashford, and, if you are interested, organise a support group that meets in the Chertsey area every two months. A lovely bunch of people who will give you a big welcome if you would like to come along and share experiences at any time. At our February meeting we will have a speaker on Nordic walking - walking with poles can be particularly helpful to those sufferers with PMR who have found their balance affected, and can help to offset the osteoporosis risk from the steroids.
I do hope you will soon start to feel much better as the steroids stabilise the inflammation.