What to do - greedy for a proper break..!

dreamdaisy

Debbie, that's some list of fibro symptoms. I was diagnosed with it last August and can relate to quite a few on there. I think it's more wearying than the arthritis. :roll: DD

DebbieT

It's a long list & I get many of them unfortunately!!

I remember ure post wen you got home after ure diagnosis, it's quite daunting!! It may explain the more extreme fatigue as we get it from both PsA & FM ... The joys eh? :roll:

You will possibly be floored by ure first big flare ... Please keep talking. Always feel free to message me!!

((((( )))))

Xxx xxX

dreamdaisy

Right, I braved the list and can tick fifteen points - enough I think! I shall persevere with my mind over matter mantra: I do mind but that doesn't matter. DD

stickywicket

I can't help re the costochondritis or the cold, numb feet as I've never had either. My mother-in-law always had cold feet but never had arthritis. However, I'm glad the pred is helping.

Neither can I really help on how to sort out the Vit. D thing with your GP though I think it's always advisable to work out in advance how one will deal with each potential outcome before taking matters into one's own hands. I understand your anxiety but you seem to have replaced one anxiety by another.

I just hope that the respite offered by the pred will enable you to think clearly about where you would like to go next. Remembeer, what doesn't kill you makes you stronger

Mat48

Thanks SW. I know what you mean about replacing one anxiety with another - yes spot on!

I took advice from a friend last night who was the consultant dietician here for years - took early retirement. She was very careful (GP is her friend) but she did say that my vit D was too low to just carry on with winter ahead and thought that with RA and the Pred I should just speak to him about it honestly. So that's what I plan - apt booked for Friday. I will copy the blood test results for him to put on my notes and explain why I did this.

She says that I will need further testing at regular intervals to check I'm getting the right amount and not taking too much so it's important to face him for this reason too. It is something that can be treated quite easily at least and if he does try to lecture me (as he did when I told him I was monitoring my own blood pressure which is always a bit high) then I will put him right firmly. I think that's the bit I'm most worried about - being patronised by him and then losing it! I also have to tell him that the Pred is making me bipolar again. Not because he can do much about this other than wean me off it and it will get better next week as my body adjusts a bit - but racing heartbeat and costochondritis in my sternum is really horrid - as have been the rock bottom blues of today. I need a plan for when and how fast to wean off this stuff although it is buying me some time off the worst of the pain for now so I'm not wanting off it too soon. Such a double edged sword always isn't it? I'm going to ask him when and if I can restart Methotrexate too.
Mat xx

stickywicket

Well done on the proposal to face the GP head on. Two thoughts come to mind.

If the pred is helping but you are afraid of the bi-polar surfacing, why not stick rather than increase the dose. Things don't sound ideal just now but they do sound better.

Secondly, I was recently prescribed a daily double dose of calcium and Vit D for osteoporosis (after 53 years of RA, several course of steroids, an early menopause due to cancer and chemo). He never mentioned monitoring my Vit D levels. I don't propose to either ask him or worry about them. As/when/if things go wrong, I'll deal with it.

Mat48

Hi SW - yes I am feeling a bit stronger now thanks - it is just great being able to move about again so easily. My friend who is a community nurse just phoned and we had a long chat about everything - her dad has RA too so she likes to learn about it from me. She said that I must just be matter of fact about getting these tests done for myself. It was really good to talk to her as she's been away for a while. As a result I'm feeling in a better place tonight.

The difference over vit D levels being checked sometimes is that I live in the northern hemisphere I suppose - highest MS figures in the world and autoimmunity generally higher here so, with two autoimmune conditions that both go with low vit D they should check every now and then. Many people south just seem to have rheumies who check automatically - don't even mention it to their patients unless it's too low. So there's a bit of a principle at stake here too. I think he should take patient's with autoimmune diseases and osteoporosis etc routinely because topping up your vit D to the right amount can make a big difference to the way these diseases affect us and also to depression too. Mat xx

[Deleted User]

Wouldn't a regular visit to the solarium help a little on the vit d front? I don't like them, since I don't like artificial things and we have about 340 sunny days/year around here. But in your case it could be a soft solution.

Mat48

We haven't got one here Caliban. I am cautious of sun because I'm very fair skinned and family history of melanoma. When taking methotrexate I always wore a sun hat and block and covered up fairly well as advised on the Metoject box - having had a severe sun skin reaction with Sulphasalazine. I think Vit d can just be supplemented in pill form for the winter as SW describes. Couldn't face the cold shower last night either I'm afraid!

[Deleted User]

Sensitive to sunlight? :shock: That's awful. No: not a shower! Just the arms and the legs. Or just start with the feet. You'll see how warm they will be afterwards.

Mat48

Oh okay sorry - too much going on I should have read properly. Will try again tonight. X

stickywicket

As you're not officially low on Vit D, why not just go down the food route? Oily fish, eggs, mushrooms, fortified cereals etc?

salamander

Hi Mat, I'm glad you are sorting yourself out vis a vis your GP and vitD problem. However, I've got a slight issue, that I think is important to raise, about the way you talk about pred making you bipolar. I'm not sure if you are aware, but bipolar is a condition that you have or you don't, to a lesser or greater degree. You may well have it, lots of people do, but the drugs won't 'make' you 'bipolar' in the short term, even though they might make you feel manic (as they do me). It's important to make that distinction. Feeling manic isn't necessarily the same as having bipolar. It's quite possible that if you are bipolar that the drugs will exacerbate your condition and cause a manic episode, as I understand it, but that's not the same as 'making' you bipolar.

You also talk about the probability of having it because you are an artist. I know hundreds, literally, of artists because of the world I live in. I know only one with bipolar and he has a very, very hard time working. He's often too down and exhausted to work and, when he is manic, the work gets ridiculously out of hand and he tends to work himself into a depression. He actually spends quite a lot of time sleeping, as it happens. It's a bit of an urban myth that artists are often mentally ill. As anyone with a mental illness knows, it can be almost impossible to do anything meaningful when you are in either a trough or a high and it tends to detract from creativity rather than help it.

I'm not saying you aren't bipolar. What I am saying is that I hope you will be more careful in the future about how you describe a very serious mental illness.

salamander

How do one edit their posts?

Re: the above, I meant to say 'talk about' rather than 'describe' in the final sentence.

stickywicket

salamander wrote:

How do one edit their posts?

Nowadays we have a very brief time slot in which to edit them. During that time if you log in and go to your post you'll see an extra 'edit' button but use it quickly or it'll go away

[Deleted User]

This very brief time slot is not very arthrits friendly. Who can move quickly here?

Mat48

The editing thing drives me mad - puts me off coming on here even. I often write something and then get interrupted and bam the opportunity to edit or delete has passed.

Re bipolar. It says on the side effects sheet for Pred that some people develop bipolar tendencies. My aunt and three friends have clinically diagnosed bipolar disorder so I don't use the term lightly. By bipolar I mean I get mania and then I get crash.

This is the definition of bipolar as a term although I realise it didn't comply with medical terminology in the clinical sense. As with rheumatoid conditions and autistic spectrum disorders there are degrees and it is a huge spectrum although the diagnostic criteria are probably quite tight. I have been diagnosed by my GP recently with severe secondary depression and treated accordingly. I questioned this diagnoses with her because sometimes I'm quite manic and depression does not fit. On steroids my moods become polarised like seesaw and so I don't feel I'm using the term bipolar either lightly nor inappropriately. BUT I completely agree with you that these terms should always be qualified properly in this context so I hope I have done so now. Of course there are artists who aren't bipolar but presently I feel I am very much as you describe your friend as being. My GP spoke as one from a medical background and with reference to a doctor friend of hers who was bipolar and also an artist - sadly ended up taking his own life. She was just generalising of course but I was explaining what she thinks about the creative spirit - not saying I agreed. The perspective of the applied scientist on the fine artist perhaps? Mat x

Ps and when you say you know loads of artists perhaps we need a definition of "artist" in this context too?!

Mat48

Pps by artists here I mean those exploring creative ideas. And for the purposes of this discussion I mean writers and composers and musicians not just people who make things in studios. For instance I know of a bipolar teacher and his illness affects his work practice severely and impacts very negatively on his pupils too sadly - so perhaps being an artist suits the condition more than being in a professional working environment for some? I'm certainly struggling to work as an artist in the public realm just now - feel I need to batten down the hatches.

salamander

Thanks for that clarification Mat. I take your points about the pred affecting you in that way and your family history. Not knowing that makes it hard to understand fully what you mean when one just reads a post. Not that you are in anyway obliged to explain yourself here! I'm sorry if you felt you had to after my comments.

Mat48

Not at all Salamander. I needed to be asked to clarify - for anyone who really does suffer from Bipolar Disorder as an official diagnosis - this thread might have caused anguish unwittingly otherwise which I would hate.

My problem (one of them at least!) is that I write too many comments while using my iphone so I don't always make things clear enough because it's hard to scroll through them. But my laptop is playing up just now too.

I have just been on my fourth walk today - marching forth in state of high anxiety to put it mildly. It's just how I go on steroids now - having been subjected to them on and off throughout my life. I bumped into the perfect friend for me - someone who really has got terrible health issues (dying slowly of an incurable disease) and we ranted crazily at each other while my poor little dog sat quietly and fixed her gaze on this chap's walking stick which he kept thrashing about - beating invisible enemies periodically.

This friend commented that I always look too physically fit and healthy to have much wrong with me - although he understood that I was mentally wired. And yet this time last week I was in a huddle of pain and hobbling badly but of course I hardly went out at all because it hurt too much. I thought to myself how lucky I should feel to be almost pain free just now while on steroids. I also had a really big creative idea on the way home so this see-saw of extreme emotions has it's pluses too and I'm feeling very inspired suddenly for the first time in months. Thanks for making me consider what I say on this forum much harder than I have been doing. Mat x

dreamdaisy

I recall my last steroid-infused walk, it was terrific. I have no idea how much damage I inflicted on my unhappy joints but I cared not one jot.

The subject of 'You look well so ergo there's not much wrong,' recurs on a regular basis. I recognise that when general friends and aquaintances enquire 'How are you?' they really don't want to know, they're oiling the social wheels, no more, no less. DD

salamander

Yes, I get this a lot, especially during the summer when I was tanned. It's very annoying!

Mat48

Well in this instance this person does have good reason to think I'm relatively well compared to him - and as he suffered from reactive arthritis for a few years very badly and has just suffered bereavement I took this as a rather humbling chat - but I know what you mean regarding many people. So many people say it to me because I've lost a lot of weight over the past few years and am considerably fitter than I ever was and looking back- I think I was brewing with RA for a few years too. So I try to take it in the spirit with which it was intended usually.

But you are very right to say that people only see and hear what they want. Actually I often feel I have more in common with a friend I meet walking her dog sometimes who suffers from Crohns and is always moon faced from steriods. She struggles to accept that she might loose her bowel and I always feel quite emotional after seeing her because so many of her symptoms and the stuff that fills her mind seems similar to the stuff that goes round and round in mine. I think it's the systemic nature of inflammatory conditions that is so hard to explain to well people (if one even wants to) and such a troublesome thing to deal with psychologically too.

I admit I hate Prednisolone but I think I have a weird attitude to pain? It just seems more honest to me somehow - so I'm only going to stay on the Pred for a short spell - will start weaning off in a week so that my rheumy and GP don't get ideas about how well I am now too! Also I'm a bit concerned about how much damage I may be doing to my poor feet with all the marching about I admit. Mat

stickywicket

I think you should look again at the title of this thread, Mat. You wanted 'a proper break' and the pred is giving you just that. Accept it and enjoy it. Yes, pred brings its own problems long term but so do RA meds and so does RA. It's not an either / or. As the saying goes 'Life sucks. None of us gets out of it alive.' You have a little respite so make the most of it.

I do find your sentence 'will start weaning off in a week so that my rheumy and GP don't get ideas about how well I am now too! ' a bit worrying. They know what pred does far better than you and I. They're not going to be hoodwinked by appearances and, until/unless they tell you to reduce it, I think you should just stick with it. What you've had so far isn't 'a proper break'. I was never one to advocate steroids as one look at my past posts will prove but there's a time and place for everything. I've taken them when necessary and, if necessary, I'll, reluctantly, take them again. Horses for courses. It is possible that, in this short time you're on pred (and it will be relatively short) you will inflict minor damage on your feet but that will be offset by the good effects of not having to analyse every pain and ache.

Just go for it. Enjoy it. It'll end soon enough :roll:

Mat48

Okay advice duly observed SW. I see GP tomorrow and will ask for another week's prescription and see what he says. I said wean off partly because I only have enough for another week at this dose anyway. I think my general mania will settle down soon as I get used to having the drug in my system - from previous experience anyway so I may get my break. Meanwhile the icy wet feeling in feet and legs was much less extreme yesterday than its been for months and I wasn't touching my trousers every ten minutes to make sure they were actually dry! Not allowing myself to get too optimistic about this yet but fingers crossed (while I can!). Thanks for keeping me straight. Mat x