Really unwell, not sure how to get through the next few wks

Starburst

Firstly, I wanted to wish everyone a very happy and healthy 2014. This is more a need to vent, so thank you for just clicking on my post and acknowledging it.

I've been vomiting on and off since I've starting my first anti TNF (cimzia) in August. Rheum nurse suggested a break and then to see her at the end of January. I'm now wondering if it's the MTX as I'm much worse for the few days following the injection. It would seem odd as I've been on MTX for 3.5 years and the dose has just been reduced to 15mg from 20mg. The thought of ending up taking a break from both drugs scares me.

I'm on 2 different types of anti-sickness but they aren't working and it's getting worse. I'm getting terrible stomach pains, my IBS symptoms (diarrhoea :oops:) have got much worse, I'm weak, feel fainty often. I was investigated for inflammatory bowel disease some time ago but refused the colonoscopy, so the diagnosis was inconclusive. My mum and cousin have recently been diagnosed with IBD but I'm terrified of putting myself through the tests.

The tingling, burny, icey, numb pains in my feet have got worse. Not sure if this is at all related, I guess it could just be a rubbish coincidence.

Tentative plan is to stay off cimzia, then trial coming of MTX for a bit and then if my other symptoms don't ease, ask to be re-referred for investigations. Rheum nurse and GP agree (unless something majorly changes) but my family feel this is going to be a long wait and keep asking me how I am going to manage with my final term of my final year for my degree when I am so unwell. The answer is; I have no idea.

Sorry for the whinge. :roll:

barbara12

Dont worry about the whinge...it must be awful when trialing these meds..I really do wish I could help....but I will have my fingers crossed that things settle down for you...bless I do hope you can get through your last year...I dont mind listening one bit...please let us know how you get on...((((())))xx

Starburst

Thank you so much, Barbara. I spoke to a lovely receptionist and have a GP appt this morning, so hopefully we can find another anti-sickness that will tide me over.

I read that it takes 10 weeks to rid your body of cimzia and it's only been 2 weeks and 5 days since my last injection. It could be a long slog, so I'll try to be calm and patient.

ritwren

Just you rant as often as you like Starburst. We've all been there and done it at some time or another and sometimes it helps to get it all down on paper so to speak.

Hope your appointment goes well this morning and you get your sickness sorted out.

big hugs
R

Boomer13

No need to feel guilty about whining a bit Sometimes it really does help a bit. I really feel for you trying to do your school work while feeling so awful is very hard!! I don't have IBS but suffer with fainting and nausea in addition to pain from PsA and a neuropathy. It's really tough. Take care of yourself. I hope you can find a med that helps.

I used to take a med called chlordiazepoxide HCL/clidinium Br (combination med) to help with a spasmodic gut. It was helpful and I believe it's an IBS med, but didn't help with nausea.

xxAnna

dibdab

Just stopped by to say that I hope the new anti sickness stuff helps, and to leave a few hugs {{{{{{{{{{{{{{{{ }}}}}}}}}}}}}}}}}.

Can uni help with any extended deadlines etc until the symptoms settle? You have done so well getting this far with all the health stuff you're struggling with- just keep that end goal in sight, you're nearly there.

Take care

Deb x

Mat48

Hello Anna. So sorry about your continued struggles As you know I've been trawling a lot of sites and getting information on various types of autoimmunity. Diseases such as Lupus and Sjogrens can affect the stomach adversely and of course there's Crohns and Coeliacs which are both autoimmune. So perhaps it would be better to just bite the bullet and get these investigations (scary I know) done as soon as possible when so much is at stake for you with coming off meds and also with your studies?

I struggled enormously with stomach pain earlier last year and had abdominal scans which were inconclusive. If the pain had continued I would have had a colonoscopy or gastroscopy but they just went after about six weeks. I never found out what was causing this problem and I do get flares of stomach ache quite often but then I do have gallstones although these weren't thought to be the culprit this time.

I stopped taking Omaprazole when the problem became much worse after taking MTX. I mentioned this to the pharmacist and she said it would likely be because the Omaprazole was significantly increasing the toxicity of the MTX. I don't know if you are taking a PPI drug as protector but if so it would certainly be worth switching to Ranitidine/ Zantac as I did as this helped a lot in the 2 day period following my injections? Sometimes we look for big changes to try and get to the bottom of things where something small is just staring us and health professonals in the face. Hoping this might be the case for you.

Also I read recently that apples are very good for the digestion and help people with serious stomach problems when they flare. Have you been referred to a gastroenterologist at all?

I do share the sensation you are getting in your feet only mine is also in my legs on and off too. I don't know what it is but can sympathise as it's very unpleasant. X

hileena111

Hi Anna
I'm so sorry that you are feeling so bad....sorry I cant help {with the meds} just sending you loads of ((((((()))))))

Love
Hileena

Mat48

Oops so sorry I wrote Anna when I meant to write Sophie! I was rushing to get my comment sent while dinner was in the oven and Anna had just commented - but I know that's no excuse. I will definitely have to sharpen up my sluggish post New Year brain in order to contribute here again. Mat xxx

Boomer13

PS Sophie, my brother and my husband both have had colonoscopies. Neither of them found it very bad to have the scope done. The worst part is the purging meds one takes beforehand.

I've had an endoscopy and it was the simplest procedure I've ever had. I don't know if that's on your list of tests to be done but I thought I'd mention it.

IMO it's better to know what you are dealing with but of course it's an individual decision.

Best wishes and luck. Feel better soon.

toady

Hi, & sorry you feel so awful I'm sure you will have gone through the options at the time you discussed anti-TNF's with your team but have they considered another anti-TNF if cimzia doesn't seem to be suiting? - I steered a bit away from cimzia when opting for my anti-TNF as I especially focus on what's likely to cause nausea & it seemed to crop up a fair bit when reading up on cimzia. I'm on enbrel and haven't had nausea symptoms (have a slightly dodgy gut so it's a bit difficult to tell sometimes but enbrel haven't made me sick ever).

Enbrel did seem to me to feature lower on the list of flagged anti-TNF's for nausea.. although obviously you can only research so far & then it's trial & error, plus my research may have been selective/slanted etc. Just my experience of anti-TNF (& apologies if I've posted this before in one of your threads, I feel I may well have as I tend to talk enbrel up seeing as it's worked well for me, touch wood). All the best for feeling better from stopping one or more of your current meds.

DebbieT

Sophie ... Ure a Rock Star & don't you forget it

Ure managing awful side effects alongside hard uni work, you'll make it thru it all tho ... You know why? Coz ure a Rock Star but also mainly because it's wot you wana do & have fought so hard for!!

Keep talking on here, we happy to 'listen'!! I do hope it eases for you sooner than the 10 weeks huni.

(((Hugs)))

Xx xX

dreamdaisy

Oh Sophie, my lovely, you do push yourself so very hard don't you? I laud your attitude and determination to not let this dross get the better of you but maybe - just maybe - it might be time to put your health first. Is there any way you could be granted some time off from your course, or delay it in some way, until the meds are sorted and you are feeling better? I may be in cloud-cuckoo land with this idea but it could be a suitable answer. ((((())))) DD

Starburst

Thank you all, so very much. As always, I feel more rational once I've rambled and let it all out.

I think I've been kidding myself over the last couple of months. I have got worse; stomach pains and vomiting. I think I'm just so used to feeling unwell that I've accepted this a little too readily! I've made yet another GP appt (bet they love me!) and will ask for a referral to a gastroenterologist. I've spoken to family, friends and specialist rheum physiotherapist, they all agree that a referral is sensible. I won't be committing to any tests, just going to talk to a specialist and get an opinion from someone experienced.

In a perverse kind of way, I hope that whatever happens, I can stay on cimzia because it's really worked its magic. It's cleared up the stubborn synovitis in my feet that nothing else had managed to do in 4 years.

I have a fab tutor and a great placement supervisor. We have a meeting in a few weeks anyway, so I'm going to discuss how best to move forward. I could take some time off uni but it would mean I couldn't graduate in July. It wouldn't be the end of the world. I could still complete this year and graduate later. I will discuss it with the head of course, she's my dissertation tutor too, so we know each other fairly well.

I'm not back to university till next Friday, so I'm going to allow myself reprieve from academic stress and just rest.

Thank you again for your generous words. You are all amazing!

dibdab

Hope you have a restful weekend Sophie. It seems to me you've been able to take some real steps forward in your thinking over the last few days. Be gentle with yourself and don't rush into anything.

Deb x

toady

Well done for facing up to the gastroenterology referral, the sensible thing by the sounds, though 'sensible' doesn't stop us trying to get away with any & all we can in the medical line (me, anyway). Very good luck.

stickywicket

Sorry I've missed this, Sophie. I've been away over Christmas.

Yes, don't just accept the stomach problems as 'normal' though you may find your GP wants to refer you first for a simple endoscopy rather than to a specialist. Would you be happy with this? It's the normal way of seeing if there's anything going on in the stomach. I've had two or three.

Whatever happens I hope you get it sorted.

villier

Sorry, me too Sophie, I have also been away. As Sticky said I think you are right to get referred by your GP to see what's going on. I am on a drug called Metoclopromide for sickness, I was hospitalised a couple of years a go and couldn't keep anything in my stomach, they tried different meds but that was the only one that worked, my vomiting is down to my neurological condition. Here's hoping they can get to the route of your problems soon Sophie, you know we are here to listen anytime.........Marie xx

Starburst

Thank you again for your kind replies. I have admitted to myself that I have been a bit down over the past few weeks. I am prone to feeling miserable but I'm usually able to pull myself up really quickly but this is a little harder.

I'm more OK with an endoscopy than a colonoscopy to be honest, although both are making me feel abnormally anxious. I have private health insurance, so think I will use that to see a specialist because I do want to chew the fat with someone who knows. I know this particular man is well regarded and he was very gentle with me when I saw him back in 2009/2010. Given that RA meds and IBD meds are not dissimilar, he may have experience with them and they can sometimes affect you, which is also pushing me down the 'have a little chat' road.

If I need to have any tests though, I will bite the bullet and just have them. I just want to ensure they are 100% necessary first.

MTX injection tonight, so it will be interesting to see if it aggravates things any further!

Mat48

Good luck with MTX tonight Sophie - hope it doesn't make you sick again this time. X

thistlegirl

Hi Sophie,
Sorry I am late to this, it sounds horrible but sadly familiar. I am glad you are getting it looked into now, these meds they put us on can really mess with our stomach. When I got my endoscopy they found my stomach was "red and angry" after this they were able to change meds and things improved quickly, I hope this is true for you too.

I also had to delay my last placement at uni, graduating at Christmas instead of July, as you said it wasn't the end of the world and I got the marks I knew I was capable of.

Look after yourself and I hope you get some answers soon.

Jenny