Rheumatoid arthritis

Scarlet

Hi everyone
Its been quite a while since I posted here, I guess because things have been good, but lately things aren't so great, hence I am here!
Last time I posted it was because I was being very bad and not taking my mtx regularly or attending regular blood tests. I'm glad to say that in the past year I have attended monthly blood tests and taken my mtx every week without fail. However I've recently started seeing a new rheumy who isn't happy with the dose I've been on for the last 3 years, as whilst it has immensely improved my condition (ie I could hardly walk, now I lead an almost normal life) there is still room for improvement. I have RA in my knees, wrists and ankles, and my knees are constantly very swollen and now my right hip is showing signs of damage - not good!

So I'm gradually going from 10mg to 25mg, so for the last 2 weeks I have taken 12.5 mg, and for the next two weeks I will take 15mg and so on. I'm really surprised that such a small increase in dose has left me so tired all the time! I'm in my final year of a degree at the moment, so tiredness is a pretty standard thing amongst my peers, but even so, I just have no energy to do anything! Will this settle down in time as my body adjusts to the higher dose? I'm happy to have the higher dose if it improves my condition, but I don't want to feel like a zombie!

I'm also feeling quite down today, as many of you know RA brings a certain sense of 'uncertainty' about the future. I'm only 26 (27 next month!) but I worry about my health in the future, and my mobility. Last night I was watching a programme about obese people with my boyfriend, there were people who are upwards of 30 stone who need constant help. And my boyfriend said to me that if I got like that, he would leave me. Fair enough. Then he said "well, I'd definitely be having an affair". Well, I was just astounded. My boyfriend has always made it quite clear to me that he hates any form of cheating, as he has been cheated on in the past. I thought we were in agreement that cheating is a disgusting thing. He said if I was that overweight, he would no longer find me attractive.

I kind of understand where he is coming from. But at the same time, I'm worried that in the future my mobility could decrease which could lead to me putting on weight. I am fairly active at the moment but that might not always be the case.
So I suppose I'm just asking what people think about my boyfriends remarks.....I was really angry with what he said. Where does he draw the line? Would having limited mobility, and being in need of help to do things put him off me, and does my personality not count for anything? We've been together three years!!

Sorry to rant everyone, but in my experience everyone on here is so friendly and always here to cheer you up, well I could really do with some cheering up today!!

dreamdaisy

Firstly, well done on being a good girl and keeping up with the meth and blood tests (yup, I do remember telling you off! ) Secondly, I hope you adjust to the increasing meth soon, I am not sure why your rheumatologist wants such a big increase as you seem to be doing OK as you are, so perhaps a compromise could be found? A half-way figure perhaps? Thirdly, your boyfriend's remarks are bang out of order and the instant response from me would have been 'Same here mate, when you become lardy I'm outta here.' Someone who loves you loves you NO MATTER WHAT you look or smell like. Simples. DD

jillyb1

Can't comment on the meth as I had bad side effects and had to stop it immediately ; but as for the boyfriend ! Afraid I would have helped him to pack there and then and pushed him out the door . Jillyb

traluvie

I have often thought and worried about my partner leaving me.
I used to be constantly active and we did lots together, now i hardly go out or do anything due to the arthritis. I have spoken to him about my worries and he said he loves me and doesn't want to leave and also said "what kind of man would i be if i left you because you are ill? i am not like that"
Might be worth sitting down and talking to him about your concerns and talk through the things that are both on your mind..
((()))

stickywicket

I have had my meth increased at a time when I'd thought I was doing well but yours does seem a very big hike up. I know they do like to clobber things on head to discourage them but, if you're having side effects too, maybe a call to the rheumatology nurse might help.

As for your boyfriend who wouldn't find you attractive if you were overweight - I don't find him particularly attractive if he can seriously make statements like that. I think you need to put the subsequent questions you asked to him. You need to know.

valval

well who knows what the future holds he might put on a lot of weight and would you then cheat on him i think you need to clear the air between you the future is uncertain enough with out having to worry constantly about this if he does not love you enough to take you as you are is there a future would you take him as he is would you expect him to change ??? what is good for the goose is good for the gander as far as i am concerned

ichabod6

Hello Scarlet,

I aint going to comment on your love life save to say I wouldnt
accept your boyfriend's ultimatum.
My ra symptoms are virtually identical to yours and for a long time
were treated with varying dosages of methotrexate.
There are other medications. I am currently taking azathiroprine which
is just as effective as methotrexate and has fewer side effects.
A further benefit for me is that with this medication I dont have to
avoid alcohol.
The occasional steroid injection into my knees and one elbow helps
immensely.
Hope this helps.

Scarlet

Thanks for your comments everyone.
I spoke to my boyfriend, and he insists he was playing around, and that I have taken it out of context. However, I don't believe that he was 'playing around', I think he's just doing some serious back-peddling!! Anyway, we have put the issue to rest now, and he insists that if I needed help because of my arthritis he would help.
I had an appointment with my rheumatology nurse today but she seemed in a bit of a rush so she literally asked if I was tolerating the mtx before bundling me off for a blood test. I told her that I was feeling quite tired but otherwise alright, but she said that its highly unlikely the tiredness is anything to do with the medication, so there we go.

Ichabod6 how did you go from mtx to something else? I have raised the issue of changing my medication to something else because I have struggled in the past with the monitoring that is needed, but my rheumatologist wouldn't hear of it, he got really funny with me actually! He said if I don't take the mtx then thats down to me, but I should remember what it was like before I went on it, and he made it clear that he wouldn't necessarily prescribe something else! I'll be seeing a new rheumy in a few months as mine is going part time (I've been seeing various locums here and there as well, one of which decided on this increase of dose) so I might see what he thinks.

tjt6768

I was only going to make one comment, and that was.. I'm on my way to smack your chap in the mush :shock: horrible thing to say hun.
He's got some bloody making up to do that's for sure...

If he loves you, it shouldn't matter what happens health wise. We have been married 25yrs this year, most of which I've had trouble with arthur but my OH now has heart failure, but we look after each other, just how it should be.

I hope your chap is good at grovelling hun. Lol

Best wishes.

ichabod6

Hello Scarlett,

I did it the hard way.
Whilst I was in hospital with legionnaires disease,
Crohns disease developed and I was immediately taken off
a cocktail of humira and methotrexate and put on azathiroprine
A big benefit is that it helps to control both conditions and it
is certainly working for me.

stickywicket

Hello again, Scarlett. I'm not convinced about what your boyfriend says. In your shoes I'd see how he behaves whenever you do need a bit of help.

Tiredness? Well, I sometimes have a 'tired day' either the day after I take my meth or the day after that. I'm not permanently tired though so, again, I'd monitor it and be prepared, if necessary, to ring your rheumatology nurse and push it a bit.

I can see, though, why they wouldn't want to change your meds if meth is working for you. Some people go through several before they find one that works. Also, if the main reason for changing is because you don't like the constant monitoring, I'm afraid it'd almost certainly be the same with anything else. Tese are powerful meds. It's great when they work but it's very important to keep a close check on them.

DebraKelly

Firstly don't worry about your meds, I was increased on Meth over a period of a few weeks and it did make me feel awful, but the side effects do pass.

However, if you are really worried you can always ask about Meth by injection which is what I changed too and its much better than the tablets, no side effects at all.

Tiredness is just something that we have to put up with this disease, but I have recently been taking a Vitimin B tablet once a day and this has really helped with the tiredness.

As for your boyfriend, maybe he is giving you a bit tough love?

dreamdaisy

The monitoring is an essential part of the treatment. It was how I found out that my liver was exploding thanks to the enbrel I was injecting: if I had not been conscientious about having my bloods done I would not have known until possibly too late as I felt FINE. Your rheumatologist has prescribed a med that is working (do you appreciate how lucky you are with that?) so you should really play your part and be sensible about the monitoring. You know all this - we've told you before! We cannot pick and choose the meds to suit our convenience - life with arthritis does not work that way and I have yet to hear of a rheumatologist who will change a med that is helping his patient. I suspect you are still struggling with this whole business, aren't you? It does take time to accept but it is here, it isn't going to go away, the meth is helping and that is what counts. I wish you well. DD

jillyb1

Hi again , Scarlett , won't make any more comments about the boyfriend as we can safely leave tjt to deal with him . Just dropping in to say that tiredness is part of RA unfortunately and another thing you will need to get used to ! I was young when diagnosed ( 25 ) and 31 years later , my family , friends and I have come to accept that I'm a dozy soul most of the time ! Jillyb

DaveBoynton

Hi Scarlet,

Glad your taking your Meth and blood tests properly, I only have to miss it and take it the next day and it messes me up for a good 3 days after. I'm on triple therapy, Methatrexate (full dosage), Sulfasalazine (full dosage) and Hydroxacloroquine (full dosage) along with all the pain tablets etc etc but my knees, ankles/feet, hands and wrists are in constant pain but do they listen ..... nope. Just started amitriptiline to help me sleep properly and they said it's for chronic pain but not working as yet.

The boyfriend thing I think has been covered but he should love you for who you are and help you ...... I look forward to finding someone who'll take me for who I am and not just because of what I look like on the outside. It drives me mad when people only look at me on the outside and don't wanna get to know ME.

Please excuse any of the meds spelt incorrect, I haven't got my list with me to check, lol.

Take care and as I was told, don't worry about ranting on here.

Dave

stickywicket

DaveBoynton wrote:

I'm on triple therapy, Methatrexate (full dosage), Sulfasalazine (full dosage) and Hydroxacloroquine (full dosage)

As a matter of interest, Dave, what is full dosage of meth? I've been on 22.5 but I think one can go higher. I presume full hydroxy is 2 per day?

dreamdaisy

I think the docs calculate it according to body weight - well, mine does. I am currently on 15 and have the room to rise to 17.5, but whether I could go above that I don't know. DD

Scarlet

Hi everyone,
I am feeling much better now, although still a little fatigued now and then. Tonight I go up to 15mg so we shall see how that goes.

Dreamdaisy, I appreciate your comments as ever, and yes you're right I am incredibly lucky to have a drug which has done wonders for me. I am sticking to my monitoring religously, despite the fact its incredibly hard to keep skipping lectures and rearranging shifts at work so I can attend appointments. I know the monitoring is really important, but I'll be honest, I find it such a chore!!

Dave thanks for your words. I feel bad because in a fit of anger I portrayed my boyfriend in a very bad light, aside from what he said (which he still maintains was a joke!...but lets not go down that road) he is actually a very lovely, caring person who understands my arthritis, and the associated problems. I had to wait a long time for him to come into my life but he was definitely worth the wait. I'm sure soon enough you'll find someone who will not only want to get to know you, but will very much like what they find on the inside :-)

dreamdaisy

I guess I am fortunate that I live a five minute drive from my local hospital (I go to the path lab there as it's easier than the GPs) and they open from 7.30am to 6pm Monday to Friday thus giving me plenty of time to sort myself out. I dutifully did the GPs fortnightly for over a year whilst on cyclosporin as I also needed a record of my BP when on that drug. I appreciate that it is a bind but it IS important. You are doing OK Scarlet so please keep up the good work! DD