Between a rock and a hard place - come with me?!

Mat48

Hi - I know I've moaned and wittered on about this rheumy appointment this Thursday to the point where you'll all be sick of me but can I just offload a little more please?!

I read of PR, PA, RA and OA and I haven't a clue what I've got really. I just know i've got something and it hurts a lot. I'm trying to stay off pain medicines but have had dreadful headaches for 2 consecutive days so have ended up on them anyway. My hands are where this arther thing now resides permanently - knuckles are pink and swollen, right forefinger has been constantly stiff and is twice as big as it's counterpart on the other side. It's all in the middle joint but when I do anything at all strenuous with my fingers - such as pull pants up or write or even type both sets of knuckles and wrists seem to flash with pain. I feel I can't moan because it's only in my hands really although my feet are getting a little sorer each day since I've been off Prednisolone - that's a week now.

Will the rheumy think all this stuff - ie one visibly stiff and swollen finger and all the rest aching and weak enough to go by though? I've photographed the wretched hands over and over in different lights and different settings across the months and have a few of knees and ankles too but they are all feeling pretty healthy just now - although feet as I say are feeling more hot and cranky today.

And let's face it - if he does say yes it's RA - and I'm really not sure that he will because my inflammatory markers are only mildly elevated, my RF was only slightly positive back in June when last measured, and my anti CCP was negative apparently - so really he's only got symptoms and slightly high bloods to go on - he said IF i'm diagnosed I'll go on Methotrexate - and call me a total wimp but I'm really scared of this drug? I've had complete allopecia twice in my life and really don't want my hair to go thin since it's my pride and joy now? And also don't want all the nausea that people speak of - I'm very allergic to things always have been - had to come off Sulphasalazine my GP prescribed because it gave me a horrible itchy all over purple rash and swellings on my neck!

So what am I hoping for from this rheumy on Thursday? I just don't know at all. I want certainty but the price seems rather high just now? Should I just say "thanks for diagnosis but no thanks to medicines" and keep trying to cure myself through diet and exercise? Am I worrying too much about Methotrexate do you think? Should I suggest others or just take the treatment and be grateful for a diagnosis IF he diagnoses me this time?

Hands aching and I'm feeling thoroughly fed up tonight. Sorry!

Mat x

hileena111

Hi Matt
Sorry you are so sore and so fed up.
I have OA which you dont seem to have so I cant comment on the drugs. Except to say that they work for different people different ways. If you have to go on it give it a fair trial and see how it goes. I'm just commenting on any drug because i have no experience of methotrexate.
As for saying no to pain relief.....personally I would use pain relief, exercise and diet. What is the point in suffering if you can take a tablet to dull the pain??? I know thats simplistic but hopefully you know what I mean.

One thing....before you go on Thursday.....make a list. A list of everything. Where the pain is, when the pain is, anything that makes it worse anything that makes it better {a bit better }
Also all the questions you want to ask......as soon as you go in you'll forget a lot of them OK maybe thats just me....but I think the majority on here are all in favour of lists.
Is it possible to take anyone with you? They can act as a memory for you.....I dont take everything in.....I come out and think now what did he say about that?? Thank goodness for my hubby who knows now to listen
The rheumy will be used to seeing things like that and he wont dismiss it....not like someone who has never had arthritis......they might think....well you look all right. I get "you dont look sick" I'm not sick but in pain and my mobility is rubbish.
No doubt others will be on to answer you soon
Love
Hileena

Mat48

Hi Hileena - thanks for your response. In answer to your questions/ advice yes I've got a symptoms diary (very factual), a pain map with markings and photos on the symptoms diary. Last time (first time) I took some of these things with me and he was so brisk I didn't have the nerve to offer him them - he certainly didn't invite me to!

Last time the chief physio sat in and my GP advised me to go in on my own because he might feel he couldn't be as frank with me otherwise and he thought it would change the dynamic. A close friend is coming with me to the hospital but I think I will leave her in the waiting room as I did last time. If my husband wasn't sleeping off a double nightshift I'd really like to take him in with me but he couldn't get time off work - it's just bad luck as he only works 2 nights a week but no can do. My idea is one I got from here - to put my smart phone on record and keep it in my handbag so that I can go over what was said. I'm not sure I'll have the nerve in case it bleeps but have been trying it out. Must go now because boys are staying up too late and my fingers are really sore.

I have looked but really don't know the difference between OA symptoms and RA to be honest but my GP seems sure it's not OA. I'm not - keeping and open mind or trying to at least..! And the chief physio is away this time getting an award for her services to rheumatology!?
Take care and thanks, Mat x

Mat48

Thanks Delboy. Will record in smart phone as another person on this forum did - its my consultation so feel this is fair enough. Can't write noted as one effect of hand pain is that putting pen to paper is hellish pressure in my knuckles - hard to sign cheques or fill in forms these days. Typing much easier but today this is hard too as fingers are cramping up after.

The physio is away this time as I've said (she's our rheumy team here!) and hoping he'll be more human less brisk without her there - just one to one - but perhaps another physio will be present. Do hope not! My friend is taking me and would come in happily but its a very small room and I'd rather get him on his/ my own if possible - better dynamic I hope?

Toes (mine anyway - hurt less than fingers presently) crossed tightly it all goes well for me tomorrow. I just want some certainty really - will take any medicine he advises is way I'm feeling. Thanks!
Mat x

hileena111

Morning Mat
Hope you feel a little bit better this morning. I didnt get back to you last night....sorry.
Thats a good idea....the recording...I remember seeing that.
The other thing is ...its your body , your life. If you think he wont want to go through a pain map and a detailed diary....take them ....but just in case make bullet points on another piece of paper. My ortho greets me with...well where's your list LOL
Others I have seen......I have just written down the main points and mention them and if I dont get a satisfactory answer just ask again. These are the consultants that dont look as if they would want to go through loads of notes LOL
I've got a new GP.....dont see her often......but I'm going to have to sort her out LOL.....she has a habit of dropping a bombshell at the end of the appointment and then walking over to the door and putting her had on the handle and saying I'll see you next appt. {whenever}
Last time it was "I'm talking you off NSAID's after this prescription and putting you on codeine" Bye
I was so shocked I was out the door before i could say anything LOL
I'll have to get used to her and not let her shove me out with a piece of news like that....I must try and just sit even if she does go over to the door LOL
Good Luck
Love
Hileena

julie47

Morning mat

I just want to wish you well for tomorrows appointment.

I have taken methotrexate for well over 10 years. My hair is good, (apart from the odd grey hair that keeps appearing) I have noticed on a rare occasion the odd hair on my pillow but honestly nothing to worry about. I haven't noticed any thinning. I remember my rhummy nurse pointing this side effect out and I was also worried.
I take my methotrexate with my evening meal, I always have, I think for me thats why I haven't felt poorly with it.

Take care
Juliepf x

valval

good morning mat the meds well they scare thee pants off all of us but sometimes trying to live with out them is just not possible but the rhummy will not make you take anything you do not wish to i try to control my arther with mild meds and exercise with the odd sterroid jab thrown in recently.get the feeling that might have to up the meds as fingers changing shape and that not good what ever you decide good luck i sometimes take some one in with me did not second visist as was sure he was going to say it all in your head had quite a shock when he gave me a prescription and said take these felt elated he did not think it was in my head but knocked for 6 as was not sure what he thought it was lol had not heard a word he said went to see doc she gave me copie of his letter and explained it to me lol good luck val

Mat48

Thanks Julie that's really cheering news/ advice for me if I get put on methotrexate. Sort of hope I will really as pain in hands and wrists so bad today I can't live like this.

Val what kind of arther did they say you have I wonder? Very glad you felt believed. That's almost 90% of the battle isn't it? My friend said we all worry that doctors will think us time wasters - not sure I feel like that because rheumy made it clear last time that he knew something was happening re arther but I do worry that he won't decide what soon enough to avoid joints getting damaged - plus Xmas coming and then I start an MLit in Jan so need to know what I've got so can adjust my life accordingly and tell my tutors why unable to drive through to uni somedays - might need voice recognition software etc? Cheers, taking you all through in my pocket tomorrow to empower me! Mat xx

ruthross

Hi Mat,
GOOD LUCK for tomorrow. I know that my appointments with the consultant ALWAYS make me nervous. I really really like the idea of recording the consultation though and I will definitely do that when I end up seeing a registrar in the future and not my regular consultant.
It's interesting that you are being told that you will be put on Methotraxate as a first call. I'm desperately hoping not to take it (I too am scared of it) but I have been tried first on hydroxychloraquine (initial improvement but now not so much), another one (which made me tired) and Metha is the next port of call.
Perhaps you can ask if you can try one of them first? I got no side effects at all from hydroxychloraquine (been on it about 6 years) and I was told it was the first port of call for people with PR...
I find it really fascinating (but also it makes me so angry) that treatment is so inconsistent depending on who you see.
It's your body so don't be bullied into taking something you don't want to take if there might be alternatives that could work for you.
I have nothing showing up in my blood tests, no visual evidence (I never took photos) of flare-ups and a really inconsistent symptom diary, so it looks like you have a good body of evidence to take with you for them to take you seriously. I hope that they do.
If they decide that it's PR, there is some scientific evidence that hydroxychloraquine stops progression to RA. I need to find a link to the paper. I wonder if it would be useful if we could build up a links page to these sorts of scientific papers because it seems that not all the rheumatologists know about them.
GOOD LUCK Again.
Ruth

Mat48

Thanks Ruth. I had thought it must be PR until recently but not so sure anymore as it has really settled in my wrists, fingers and knuckles over the part 6 weeks so that a finger on each hand is constantly purplish at the joint and double the size of its counterpart on the other hand? Neither will bend far and never beyond a slight curve these days they are all stiff but these two are like unbending rods- I think PR tends to move around more rather than making itself at home in specific joints long term as mine is doing now?

But we will see - i will let you know how it goes I promise. Thanks for tips about hydrox,,, I will ask if we get that far. Hope I don't lose the plot if he says wait for more tests, still inconclusive etc because I woke up last night shouting at him in my sleep?!
Mat xx

kellerman

Hi Mat,
Count me in for pocket duties tomorrow.
You were telling me off about worrying...so just stop.
All meds have side effects,so cross that bridge when you come to it.
I hope you have a good appointment....and some answers.
Please keep us updated....and stay positive. May

lindalegs

Hi Mat,

The main symptom of RA is that it's symmetrical, it's never just one knee affected, it's both or it's never just one finger it's on each hand, etc.

Mtx was a good drug for me and worked very quickly. Sadly, although I was only on 10mg tabs a week, it seemed to give me waking headaches 4 days out of 7 per week. I lived with this for three years until my Rheumy decided to try me on anti-tnf treatment.

You will be monitored if you're put on it and also prescribed folic acid to prevent hair thinning and other side effects. If you find the side effects aren't worth the benefits talk to your Rheumy and he/she will will advise you on other Dmards.

It is worth a try because if it works for you your life will be so much easier.

Good luck for tomorrow.

tillytop

Evening Mat

Just to say I will be thinking of you tomorrow when you go for your appointment.

Clearly you are worried about the appointment and that is completely understandable. I've been doing this a long time and I still get in a real lather beforehand. I know you are going round and round in your head trying to work out what sort of arthritis you might have and trying to second guess what the doc will say and planning what you will say back but I can tell you from long experience that that will just make you more stressed because appointments never go exactly as you think they will.

But, from the sounds of it you are really well prepared with your pain map and your photos and I hope that you do have the opportunity to show them to the consultant because they are potentially a very important part of the diagnostic process. Like the others, I always take a list or other relevant paperwork with me and I have found that, if I hand it over as soon as I sit down with the consultant, the opportunity isn't lost. I tend to say something like "I have brought this information with me because I think it will be relevant to our discussions" and just hand it over. The other thing is that you should be given the opportunity to say whether you are happy for another person to be present at the appointment and if not, you should feel you can say if you are unhappy about it. I have always been asked if I minded when the situation has occurred at my appointments.

As to worrying about whether they will believe you - that seems to be a common worry but because there are so many different types of arthritis, the rheumatologist must have seen people with many and varied symptoms and just because yours maybe do not fit a "typical" pattern, doesn't mean they are any less important. And don't set too much store by the blood tests either because they are only part of the picture.

Finally (sorry if I am rambling) please go into your appointment with an open mind in terms of DMARDs because if it IS inflammatory arthritis, you will never cure it with diets etc and joint damage cannot be reversed if you forego the drugs and change your mind later on. I know the thought of any new drug is frightening but try to hang on to the thought that anything is worth a try and, if it turns out not to be right for you after giving it a good go (usually a few months minimum), you can stop and try something else. You may have to accept the fact that it may be a bit of a roller-coaster ride until you find the best combination of meds for you but if there's a chance you could feel better, I reckon it's got to be worth it.

Good luck!

Love Tillyxxx

valval

will in your pocket will keep quiet or you might record me snoreing that would not do :oops: :oops: will bring lots of tea as well val

kellerman

Morning Mat,
I just popped in to wish you luck....hope you had a reasonable nights sleep.
Hope to here from you later.Stay calm and factual and don't forget your notes. Love May

julie47

I am In your pocket Mat

Take care and good luck

Juliepf x

prefabkid47

Hi Mat
will gladly do pocket duties today.I have RA in the hands and have been on methotrexate for several years and has given good control with no side effects.
Ron