Feeling tearful

Starburst

Sorry I've not been around very much. I'm finding university and my placement really exhausting. The essays are piling up too!

I've been on cimzia for 11 weeks. I had initial improvement in the first few weeks and I'd hoped it would continue but it levelled off. While I cannot deny that things are a lot better, it's not as good as I'd hoped. I'm still having side effects. For about 5 days out of every 14, I can only eat plain food because I feel so nauseous and I vomit frequently. I get terrible headaches too. Healthcare at home are not very helpful, they just say to phone my hospital. The rheumy nurses keep encouraging anti-emetics but they have side effects and I'm not keen on taking even more medication.

I'm due a rheumatology review next week and I think I want to come off the injections. From the message my rheumy nurse has passed on, consultant would prefer I carry on. I am anxious about trying another anti-TNF and I'm kind of just thinking I'll stay on MTX and Lef even though they're not doing much anymore.

I'm tired of being told by pharmacists, nurses and doctors that vomiting is not a usual side effect. Perhaps it's the combination of drugs. I think that I vomit because of the headaches (which are a common side effect).

My elbow is so swollen, it's 3 times the size of my other one. It's red, it's hot, it's agony and I am miserable. The saga of foot has continued. I don't know what's wrong but it's so painful, feels like it's on fire.

Sorry, this is a bit all over the place. I'm feeling very tearful at the moment and semi considering lumping the degree and hiding in my bed for a decade.

dibdab

Oh dear, really wish we could help you somehow. Just sending lots of gentle hugs (((((((((((((((((((( )))))))))))))))))))))).

I hope that your forthcoming rheumy appointment is positive.

Deb xx

Starburst

Thank you, Deb. xx I'm already feeling very embarrassed about my self-pitying whinge. :oops: I just had a moment of; "RA symptoms AND side effects??? Really?!"

To be honest, I'm struggling with uni and not enjoying my placement. I've spoken to my supervisor and uni tutor, so hopefully more support with be forthcoming.

suzygirl

You have so much to contend with, I am not surprised you are struggling. It is a balancing act between the meds and side effects. Have you tried all the anti emetics? Buccastem isn't too bad, it dissolves in the mouth. Can you take something for the headaches? I get headaches from vertigo and get sick so understand a little. It becomes a cycle.

Take some time for yourself over the weekend and do stuff that makes you feel good. Paint your nails or watch your favourite movie, catch up with friends, whatever is your thing.

You are doing all the right things, I wish I had the magic wand to wave for you.

((( hugs )))

dibdab

Don't be embarrassed, some times we have to spill it out to really get a grip on how we feel, and this a safe space for that amongst others who can empathise. RA is so isolating, and you are working so hard to live with it, I mean really live not just exist.

Well done on putting the support wheels in motion at uni- they have a duty of care I'm sure.

Just a thought, but have you tried peppermint tea for the nausea?

Deb x

stickywicket

((((())))) Don't dare apologise, Sophie. You are amazing in what you have achieved and continue to achieve. A spot of treading water is no bad thing from time to time. I'm running out of battery (That's not a metaphor ) but had to pop on to say I'm sure you'll make a good decision about the meds - whatever it is - and will sort out the uni situation. You're just tired of the whole merry-go-round right now and no wonder. Chin up. ((((()))))

Mat48

Just wanted to offer you a huge cyber hug and tell you that you are a very courageous and inspiring young woman and please just hang in there somehow with your studies.

Buccastem was the antiemetic I chose because it didn't feel so much like another drug and it made me sleepy too so useful at night after MTX. Its a horrible feeling not being able to tolerate a drug. We are all so keen for these meds to make a difference that its doubly miserable when they make us feel even worse instead. But there are other anti-tnfs and I'm sure one will have your name in it. Mat xx

As5567

Sounds like you're having a very bad time. 11 weeks is a reasonable amount of time tolerating unpleasant side effects, I personally would talk to my doctor about trying another biologic. Everyone reacts differently to different drugs, hopefully you will find that another biologic gives you very little side effects and works just as well as the current one, or even better.

I'm glad to hear you have felt some improvements from this drug which is one positive I guess? I think we all get a bit too optimistic sometimes when trying new drugs especially when we start to see some improvements, sadly the drugs are in no way a cure and cant take away all of the pain and misery.

bubbadog

Starburst, you've been so sweet to me, I never knew you where suffering twice as bad as me! I'm so sorry! (()) I get very nauseous with my meds but I take a anti-sickness drug called cinarizinne it does help me. Your so over whelmed with everything know wonder you feel so tearful!
It sounds like you need to talk to your tutor and see if they can take some of the pressure off you. Your trying to juggle Uni, Arthur, meds/side effects and pain. Something needs to get sorted cause you can't keep juggling all that in your life.
I understand you have your reservations about medications, I had my own concerns about medication and I had a talk with my rhummy which I think may help you. You need to sit down with your rhummey and put the meds on the table explain how you feel about some meds not working, getting nauseous and headaches and feeling so bad and your concerns about anti-emetics and not wanting a lot of meds. Being honest with your rhummy does help they can't mind read!!

Hope you can get some things sorted so the pressure is taken off you, let us know how you get on. Sending you a big (()).

barbara12

Hello starburst..I am so sorry you are struggling like this ..and please dont apologize for having a moan..you have so much going on at the min...if it helps please keep talking to us lots...((((()))xx

Starburst

Thank you for your lovely replies. I have tried ginger and peppermint tea and pretty much anything going that claims to ease nausea!

Unfortunately, I managed to have another fall and re-injure the same ankle. I've made a GP appointment for Monday and will ask for a re-referral to my lovely foot & ankle ortho surgeon because for some ridiculous reason, a consultant cannot refer directly to another consultant! I will also discuss any another anti-sickness medication options.

I'm still 50-50 about carrying on with treating the RA aggressively. It just seems to bring more problems. Having pushed for aggressive treatment for the last 4 years, I am now at the point where moderate control seems better because then, I am not at the mercy of the side effects. I think I mentioned before that the immunosuppressive nature of RA meds seems it cause problems in itself.

Rightyho, time to log off, scoff some Quality Street and then bed!

chookgate

Starburst wrote:

Rightyho, time to log off, scoff some Quality Street and then bed!

Instead of the QS try some chocolate gingers - they're not only my favourite choccies, but they really settled my stomach down (okay it was only over eating Chinese food, not a reaction to drugs, but still!)

villier

Sorry I missed this Sophie, I am afraid I know nothing about your drugs so cant advise, I get nausea due to autonomic problems which I take metaclopromide that keeps it under control. I hope you can get your meds sorted out soon and get something sorted out at uni, you have done so well and come so far, you moan all you want anytime, hopefully it helps ((()))...........Marie xx

barbara12

Sophie whatever you decide we are all behind you...not an easy choice and I wish I could offer some advice...(((()))xx

dreamdaisy

Oh honey, I am sorry to be late to this, I had a tearful day yesterday but for different reasons.

I am not surprised you are feeling as you do, you are one brave girl who usually refuses to let your RA get the better of you. I admire your pluck, I really do, but perhaps you have bitten off a little more than you can comfortably chew at this moment in time. Is there any way you can defer your course, or ease the hours of your placement? I freely admit that I am a total dinosaur when it comes to the affairs of the young but I hope you can find a way to work through this tricky time and still succeed. You deserve it. DD