Well though i might do my first ever blog. so here goes !!!!!!

Some of you may be aware of me normally i would leave a comment but have not been brave enough to leave a blog can't say why. At present i think i'm not doing well at all. I am taking sulph and dicloflex which i started yesterday. As naproxen was having a very unpleasant side affect !!

Four weeks ago was advised to stop taking sulph and hydroxy for one week. Coz was feeling very sick, tinnitus and dry mouth. I was told by rheumy nurse that she would be happy to give me a steroid injection. After the week was up, was very glad to start taking sulph as knees were being to shout !!

Well for some reason i didn't fancy the said steroid jab. Think that may have been a mistake. Now i'm four weeks into building up sulph. Next week i will be up to full amount thats six tablets a day. Then week after start the hydroxy. I still have the tinnitus that never went can say don't feel sick any more thank goodness.

Now i feel that all i want to do is sleep. i have no interest in wanting to any thing at all i did not feel that way before i had my week off meds, am i expecting too much ?

I saw my lovely GP yesterday. He said to get in touch with rheumy which i have,and not a word from them!!! I will try again on Monday. THank you for taking the time to read my whiney blog.

24 Replies

  • you could still get steroid tablets if you dont fancy the jab. RA makes you very tired it does me x

    I t is a lovely blog and not too long just how I LIKE them, xx

  • Hello miss :) Well done on your first blog and don't be silly, you're not whining!!! I'm sorry your not feeling your best right now :(

    I think it's quite impressive you declined the steroid jab, I mean they can have unpleasant side effects and there is no rush you can still have one if your symptoms don't improve after taking up your full medication again!

    I am feeling kind of the same at the moment, just really tired, fed up and not interested in anything at all until I can go to bed and just sleep and forget I'm feeling down :) The mini medication holiday probably shook up your system a bit but hopefully it will settle down once they start to work again. I don't know if sulfasalazine is the same as other DMARDs in that it takes a few weeks/months to work?

    Definitely get on your rheumy's case and demand to be seen, it's no fun juggling meds like this!!

    Hope you feel a bit better and looking forward to reading more blogs from you :)

    All the best and good luck with the meds & appointment! Christine xx

  • Thank you ladies and i will be on the case of rheumy come Monday x

  • Hello there,

    congratulations on your first blog! I'm into week 3 of Sulpha .... so I'm meant to be taking 3 tablets a day now but keep forgetting. I don't expect anything from it yet - I believe it does take a while to kick in like other DMARDs. Also I didn't get any appreciable benefit from mtx until I got up to full strength & then the results were really good though unfortunately didn't last.

    I think patience is the name of the game. Your tiredness might be to do with your week off meds but then RA is an unpredictable beast so it might have happened anyway. But do persevere with getting in touch with your Rheumy - he or she needs to know how you are and might just be able to help or at least reassure you.

    I'm refusing steroids too - I'd have a jab if I was in a lot of pain perhaps but I'm sick of the way steroids mask what is actually happening. For example they bring my ESR right down & make it look as if the DMARDs are working better than they actually are.

    I too am all over the place at the moment. I hope you are able to give in to your tiredness and sleep when you feel like it ..... a lot of sleep might be just what you need at the moment & might help in the long run.

    Luce x

  • Thank you Luce. I am a bit impatient for results can't seem to help myself!! I'm good at telling others what to do.Hummmmmmmmmm really must obey. Honest i am going to try.

    I spent easter sleeping well quite a lot of it, One day at work and i'm exhausted again . As you say ra is a beast hopefully things will improve x

  • Hi miss,

    Well done and thank for sharing your story.It is normal to get impatient. It is the waiting and not knowing that always kills me inside.

    I had 5 days off during easter, went back wednesday and I was also exhausted. I use the 'tiredness' to my advantage though, it gets me out from cooking dinner sometimes.My poor partner is all confused if it's him, the drugs or the hormones making me all cranky, sometimes its all of the above haha.I get bad and good days.

    Like what others have said, things will improve so just stay positive. Lizax

  • Hello miss,

    It's a very strange feeling doing a blog for the first time, isn't it. I know I got a bit anxious about how it would be accepted at first, but I've done 4 or 5 now and I feel a lot more comfortable with it. Anyway, you've done your first now, so congratulations to you :-)

    This tiredness is driving me mad too. I've been wondering if this cold weather is making the tiredness worse, because so many of us are complaining about it right now.

    I find I'm suddenly drained of all energy and I have no choice but to sit or lay down for a while. Mostly it remains like that for the rest of the day and like Christine I'm just glad to crawl into my bed at the end of the day!

    It sounds like you are going through a tough time with your meds right now, but I would only suggest what others have already said. I didn't get on very well with sulfasalazine at all, it made me feel very sick and I had a sore mouth too. As for MTX, well that has really upset my whole digestive system this last couple of weeks, it follows the same pattern each week, the first 48 hrs after taking the tabs being the worst.

    Sorry, I've had a good moan myself so that doesn't help you much does it :-( I wish everyone an energetic and comfortable weekend :-) June xxxx

  • Hi nice to see your blog. I am awake but real exhausted might try to sleep now, good luck on Monday xxxxxx

  • Morning MIss,We'll done on your first blog,just keep them coming the advice and support from people on here is superb ,so don't feel your problem to small or doesn't matter,because it does.In my experience on here we don't judge you we support each other.

    We are all in the same boat,we all kinda know what we are chatting about .Hope the Rhumi team get back to you it is frustrating,you think they don't care but I find the majority do there best to help.

    Soft hugs for you hope you have a better day.

    Angie x x x

  • Morning miss,i have only just got up so i come to this blog late. First blog over with,well then thats the hard part over with. You do it and wonder if anyone will bother to answer and yes it applies to me after all this time. Don't ever apolgise for moaning, if we never had a moan this site would be empty.

    The problem with our disease is it is a waiting game all the time.I was weaned off the steroids and i was so proud of being off them,only for the pain comes back twice as bad before. I am back on steroids now for the time being. I am waiting on anti-tnfs to be sanctioned. If you have a good rheumy team behind you the they will be only a phone call away and use them and us if you have any queries. We on here can't replace your rheumy team,but we are a good sounding board and we can probally come up with questions that you wouldn't have thought of.

    WE are always here for you,so don't worry about asking us anything however silly it sounds to you,someone will have an answer for you. I look forward to hearing more from you miss and yes before i go i am the one that puts some of the silly blogs up as we need a laugh with this disease.Love sylvia.xxx

  • Hi, I think you blog great, well done. This site is for all to share and gain insight so thank you. I'm nearly 5 months into treatment and its up and down but one really common thread is the tiredness and lack of motivation. My wife at work my girls are away so just got up with my little boy. Going to try and fun day x

  • Hi Miss

    As others have said great blog! Well done as well for doing too, I'm sure the next one will much easier for you to do:). I too worried about blogging and then after I had, apologised for my typo's etc ( you haven't any by the way!) but hey - it's not a writing competition or who can manage to write the longest, most impressive blog is it? It's to share our experiences, thoughts, feelings and as long as that comes across ( without being to self obsessed!!!!- which again your not) who cares about the spelling typos etc....most blogs on here are from the heart and that's all that matters.

    Hope you feel loads better soon and look forward to reading your next blog :)

    Maddie xx

  • Hi to all thank you all for your lovely commits. It really helps to know that you have kindred spirit out there !!!!!

    I will be on phone Monday morn to rheumy team and take it from their.xx

  • Hi Miss, well done for a good blog.

    As others have said it does take quite a while for the benefits to show from the meds. Just thought I would mention my experience re the tinnitus - I found I was suffering with this and put it down to dicloflex which I was taking at the max dose (3 a day) for quite a while, maybe about 14 months. However when I started getting the benefits from the methotrexate I have really cut down dicloflex, now only take about 2/3 tablets a week and have noticed the tinnitus has gone. So hopefully this may be your experience too.

    Good luck


  • Thanks for that. Its the patience thing with me!!!! As i have tried not taking naproxen, the tinnitus did lessen, it did not stop altogether. I will try to stop dicloflex or lessen it when i'm up to full strength salfas xx

  • Hi miss. I can't say much about the RA meds as i'm not on them yet. The Naproxen however gave me stomach pains & made me feel really sick. I asked the doctor if I could go back on the Brufen Retard which I had taken previously which he agreed to. I have taken the Brufen Retard for years without a problem they are much kinder on my stomach, don't know if they may help you? They put me on Naproxen because they were stronger but unfortunately I couldn't take them. Good luck & I hope you get sorted soon. Franbie

  • Thank you i will wright that down for future reference xx

  • Hi Miss, hope you soon feeling better than you are now and when you have been on both your meds a while longer I am sure things will settle.

    About the Diclofenac ... I definitely blame it for my tinnitus. Each time I have had to take full dose (for me that is 3 x 50mgs per day) and done so for a few weeks I get the tinnitus too. It is not long lasting but the buzz is intermittent and noticeably loud. Goes after about fifteen seconds but can get several lots a day. Then when I go down off the Diclofenac the buzzing goes. It was even worse when I used to take ibuprofen fifteen years ago. Didn't stay on those long at all.

    Here's to less buzzing and clear ears ;-)

    Neonkitty xx

  • Thank you for the insight. The buzzing is annoying. I try to tune it out.xx

  • Hi Miss, yes ... I find my earbuds/iPhone mask some of it. It is good to know when you stop taking the Diclofenac the buzzing goes. xx

  • thank the lord for that !!!!!!!!!!!

  • Hi Miss, yes ... I find my earbuds/iPhone mask some of it. It is good to know when you stop taking the Diclofenac the buzzing goes. xx

  • I enjoyed reading your first blog. Well done you,

  • Thank you sorry its taken me a while to get bake to you i blame work x

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