in a lot of pain and depressed

cris
cris Member Posts: 35
edited 15. Jun 2016, 16:53 in Living with Arthritis archive
Hi i don't post much , I am in a lot of pain at the moment due to being taken off the ani TNF enbrel, the new doctor said it wasn't working!!

it clearly was as i am in s much pain even after taking 8 tramadol a day and three 50mg indomethacin,

they tried the abatercept but i got a side effect , they said it was a side effect i have yet to prove them wrong I think it was a food allergy,

they started it again but i got some ulcers in my mouth not sure it they were due to the abatercept so they took me off it together,
and i am in so much pain my granddaughter is typing this for me, I can't move my arms and my elbows are swollen and so are my wrists and fingers.I am not sleeping at night and they won't see me untill 12 feb I have been off the meds apart form Tramadol and indomethacin since before xmas, and I think this is medical negligence, the pain is travelling to my neck and chest, and I just don't know what to do my gp can't do anymore he says, please help if you can I am very depressed with it all

thank you for reading sorry its so long!


cris
«1

Comments

  • fortuna
    fortuna Member Posts: 149
    edited 30. Nov -1, 00:00
    I'm sorry no-one has replied to you and that you are feeling so down. I am very new with RA so do not feel able to advise. But I do sympathise as mine started with my hands and wrists and it makes life so difficult with such awful pain.
    Hopefully by now you have got something sorted out and are feeling a bit better,
    Fortuna
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I'm so sorry, I don't know how this was missed!!

    I have PsA & OA & have been using pain killers only since June 2013 so I completely empathise!!

    Can't ure GP get you in with a Rheumy in an emergency appointment for a depo steroid injection at the very least?? It does feel very neglectful leaving you with nothing :(

    I use tramadol slow release & Naproxen is my anti inflammatory ... Is the other med you mentioned an anti inflamm? If not I'd be asking my gp for one.

    I think ringing the Helpline Team would be a great place to start for advice on wot to do next. The number is at the top of the page.

    The very best of luck. Do let us know how you get on.

    ((((Hugs))))

    Xx xX
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    cris wasn't missed, this thread was posted three times and he / she received some answers on one of them but hasn't as yet replied, so hopefully things improved. DD
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Thanks DD ... I thought it was exceptionally odd!!!

    Let's hope so.xxx
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    sorry i have replied but it must be in a duplicate thread,
    I am feeling lots beter but shoulders are stil very painfull , having to go on the rituximab after all , but if it does not work I have nothing else, back to square one again I do hope it works on methotrexate and hyroxy (think th itchin is down to these two!! and taking naproxin , dont know what happns to them though when i do go on it.

    will keep you updated, you have all been so kind with your replies

    sorry it was not noticed that i had replied after all you were all good enough to read it thankyou
    cris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am pleased to read that you are feeling somewhat better in yourself, I am on a triple therapy plus anti-depressants - the latter help me cope better with pain. Many of us are floating along in similar boats so please keep in touch - we do understand what it's like and how difficult things can be. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Hello again, cris. Good to hear from you. I do hope the ritux works for you and you will be advised what to do or not do about the rest. Think positive and stick with us for support :)
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi Again

    Having my infusion next weds , have to say i am quite scared, i have had bad reactions to drips before when i had septic arthritis in my shoulder, it was awful.I keep getting very tearful when i think about it or if my family talk about it, they just keep telling me they support me and thats all they can do i know that.

    and to top it all i think my thyroid is playing up, i thought the tramadol was taking my voice away , well i am not taking it now so its not that as its still the same . So must be my thyroid. Also i have become intolerant to sugar I think?as every time i have a drink that is fizzy or take two naproxin morn and night i get the giddys and i can,t sleep going back to my gp on friday this week so see what she makes of it all , the naproxin was working quite well too on my night pain.

    will keep you updated! take care and keep pain free if its possible
    hugs cris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The infusion will be a different proposition to other drips that you have had and I know, from experience, that you will be closely monitored whilst it's going on. As for the fizzy drinks, well they are less than healthy for anyone, they are packed with sugar, caffeine (which is a stimulant hence the giddiness etc.) and other nasties - they are not healthy and the diet versions are worse. I have the occasional can of coke because it helps with nausea but I keep it to the minimum - one can has seven heaped teaspoons of sugar - I couldn't eat that amount if I tried!

    Please let us know how you get on and I hope your GP can help. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    As DD says, cris, this will be a completely different infusion to your previous one so there's no reason why you should react similarly.

    I'm afraid I know nothing about thyroid problems and very little about tramadol. I did take naproxen for years though and I don't think there's any, or at least much, sugar in it. Provided you don't swill them down with anything sugary I don't see why you'd have a problem there. Water is good, or milk or tea.

    Fizzy drinks are packed full of sugar though and good for no-one.
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi
    Thanks for the replies.
    I don't normally drink fizzy drinks or drink alcohol, but i did have some coke last week so prob was that,that caused the giddy also i was drinking a lot of tea which is what i drink , doc said that could have been it too as tea has caffeine in it too,

    anyway that seems to have cleared up , I am not taking any strong painkillers like i was before but I am taking the odd paracetamol now after
    I ended up in A&E Friday morning with my stomach, i have erosion's on my stomach that obviously got worse or something set it off, was pretty bad thought I was having a heart attack it was so bad.
    The A&E doctor told me i may have a bug growing in my stomach and to ask doc to do the test so that will be done next week , GP is checking my thyroid as i put on so much weight i find it difficult to put my arms by my side ,(i know they are bent at the elbow with RA but still ).
    and I am going to be having a appointment with the ear nose and throat guy. That will sort out me losing my voice and why ,so being really well looked after since i decided to change my GP :).

    my Infusion is in two days time and i am still nervous, I keep reading that some people have had really bad reactions , and that scares me.

    I still think that my shoulders being the way they are is something they need to look into more and not just assume its the RA, all my other joints that are affected are fine since starting the methotrexate and the hydroxychloroquine(sp). I usually know when my RA is the culprit of my pain I have had it since I was 21 I am now 57!!

    will be on in a few days time to let you all know how the infusion went.

    cris x
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Cris, sorry I missed this earlier.

    Tea – you could try decaff or, better still Redbush which has neither caffeine nor tannins, I believe. I always go onto it after about 8pm.

    The tummy bug is probably helicobacter pylori. It can cause ulcers but can be sorted with pills. To protect my stomach (I've had u lcers and erosion of the lining in the past) I never take any meds without at least a small amount of food.

    I'm sorry, I know nothing about thyroid problems.

    It's possible that your shoulder problems are more OA than RA if you've had RA for so long, especially if you weren't always on DMARDS or biologics. I have that. Nothing much to be done, I'm afraid other than exercise and pain meds.

    I hope the infusion goes well. I've not had one (Well, not for RA) but I know you'll be very well monitored while having it so, if anything did go wrong, they'd have you sorted in no time.

    Please let's know how you get on.
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi Stickywicket
    Thanks for the advice. I am sure I,ll get through it still dreading it i been sick today just thinking about it i just can't keep my food down today. I don't know how i am going to sleep tonight.but thanks

    also does anyone know what kind of drug the rhutiximab is? I keep getting people telling me its a chemo drug , my family are getting worried as they think that if i am going to be having chemo that there must be something i am not telling them!

    I just want to find out! and if i do not do that tonight I will def be asking tomorrow and get them to explain to my husband so he can allay any fears my Children are having, I have got my self all worked up I so hate infusions
    I don't know what I am going to do for 6 Hours either, i don't read and def don't do puzzles.

    goodnight everyone sleep tight

    cris x
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I believe rituximab, like many other meds we take for inflammatory forms of arthritis, is also used in chemotherapy but in much higher doses to those we take for arthritis. I take methotrexate, which is used in chemo, and also hydroxycloroquine which was first used to treat malaria. Many meds have more than one use.

    When in hospital I spend a lot of time chatting to other patients but, if this 6 hour infusion is the start of many, why not start reading and / or doing puzzles? Ease yourself in gently with a magazine and you may, eventually, find yourself hooked on a very useful pain-distractor.

    Good luck!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I used to have infusions and enjoyed them because there was someone to make me a cuppa or two, someone to chat to, magazines to read (short articles are a boon in a situation like this) and the time used to fly. I took a puzzle book and a backup reader (plus biscuits to donate to the general tin) but never had time to use them because so much else was going on.

    I never told my mum that I was taking an anti-TNF med (in my case humira, Enbrel or infliximab) because I knew she would not understand that this was not scary. We are ordinary people (not doctors) so won't necessarily grasp how a drug or drugs used to treat cancer can work for arthritis - they can but at very reduced doses.

    I hope today is going well for you - maybe next time you could take your MP3 player? Listening to a story or favourite music could help you pass the time more gently.

    Please let us know how you fared today. DD
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi its been nearly a week now since I had my first infusion of rutiximab.I had nothing to worry about it was fine , I found myself chatting to everyone and the nurses whom some of them I knew as they used to work on a ward i used to go in for my RA. My husband stayed with me as he knew i was nervous , but i think he was too.
    I am going for the second one next weds the 25th , its my husbands birthday too poor thing. we will do something at the weekend as he works anyway, I am still on the methotrexate and the hyrdoxychloroquine I don't feel any diff , like it's working but i don't know whether that will be until I have had the other one.

    having lots of probs with my stomach though I can't take naproxin at all or i would be back in A and E again, I could do with something , i have paracetomal but its not very strong and my left arm is really bad and my shoulder on same side. I am not sleeping very well either I still keep getting the giddy feeling when i want to go to sleep , getting my thyroid checked on thurs so hopefully if its that it will be sorted, I cut out everything with sugar or caffeine so it's not that.
    I do hope the infusion works .

    can anyone tell me how long it might be before I get any notion that its working?

    Take care everyone xx
    cris
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I'm sorry I'm so late coming back to ure thread!!

    Wot a relief that the infusion wasn't anything like you feared :) I noticed many members said as much to you but ure anxiety stopped you from believing I guess? It's understandable, fear of the unknown etc I really hope it helps to calm ure RA.

    Are you & were you taking a tummy protector like Lansoprazole or Omeprazole?? Naproxen & all anti inflammatory meds should always be taken with a tummy protecting med & food if possible. It can help to stop all these problems ure now having with ure tummy!! I hope ure at least on one now?

    I'm afraid I'm not on ure biologic so can't help with the time frame.

    (((Hugs)))

    Xx xX
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am pleased that you coped OK, I hoped you would and you did - well done! :) As for how long before you feel a difference, well, how long is a piece of string? We are not soothsayers or fortune tellers, if there's a difference to be felt you will feel it.

    Paracetamol won't be enough to do much about the pain, please ask your GP about other forms of pain relief but be prepared for whatever you try not to take much more than the sharper edges away, that's why I call them pain dullers because that is what they do - they dull it. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I'm so pleased the infusion went well. Hopefully it will start to help soon. Best of luck with the thyroid appointment. Do let us know how you get on.
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi everyone
    Infusion on weds again the second one, fingers crossed for me that it starts to work ,
    Debbie I am on a stomach protector I have been for years (more years than i can remember) became allergic to omaprazole and lanzaprozole and now on ranatidine on 300g twice a day seem to be working since they upped the dose.I can't take strong painkillers anymore my GP won,t prescribe them, but I only need pain relief for the shoulders, everything else is fine,although i struggle with daily life because of the damage it has done through the years as my arms are quite bent and hands are badly damaged.
    If the rutix does not work I am going to ask for an ex ray on my shoulders, something must be amiss there. I really do hope it works though I am fed up of staying in the house as I am not able to get around by myself anymore its soo depressing, I had to have my husband help with a shower last night , I just couldn't manage by myself. something i have never had to ask him before. It was quite an ordeal too, I have also been on a bit of a diet an have lost a few pounds , I want to see if i can lose some of the fat from round my elbows and the backs of my arms , my elbows have thickened so I don't know if that will work. I am going to start swimming soon when my daughter is better from her operation, I cannot dress myself or get in the pool by myself. thank you once again for the support, where would I be without this forum.

    cris

    look after your selves now xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Good luck for tomorrow, at least you know what it entails now so you can be better prepared. Don't expect instant results, these meds do take some time to build up in the system and I hope it does help soon. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I hope the ritux helps, cris. As to whether or not it helps with your shoulder pain - your rheumatologist will look at your CRP figures. If they are low then it is working regardless of any pain you might feel in your shoulder. It might be that the shoulder pain comes from damage already done ie OA but let's hope not and the infusions can sort it out.

    You have good plans about the swimming. (Don't overdo it at first. Ease yourself in gently.) and well done on losing the weight.

    Let's know how the next infusion goes.
  • cris
    cris Member Posts: 35
    edited 30. Nov -1, 00:00
    Hi everyone
    an update on the rutix, I am not sure its working yet as I am still in a lot of pain I am still not able to do much without getting in a right state , I am weak when i do things and my back has started to hurt when i try to sit or stand to make cards, so upsetting as i used to love doing this.my shoulders and arms are still the same , the doctor has taken me off all painkillers apart from paracetamol. I had a blood test come back that was low on red cells and given the stomach probs and the swallowing she is sending me for the camera down argghh I didn't like it last time.and if that is inconclusive i have to have a colonoscopy too , i really hope i don't have to have that I was with my daughter when she had that she screamed all the way through.

    I am going away for two weeks so you wont hear from me till i get back, I hope the rest will do me good, not abroad just to Cambridge.

    take care of your selves everyone see you soon xx
    cris
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I don't know how long ritux normally takes to work. As I said, the shoulder pain might not be due to the RA but I hope it is and the ritux will sort it out.

    As for the endoscopy, it's normal if you're anaemic and anaemia is quite common with RA. It's to check for any possible bleeding from the stomach. If there isn't any the colonoscopy will check the other end and if, like I was, you're clear all the way, you'll probably just be given a course of iron tablets. I didn't have any problems with my colonoscopy. I was told there are no nerve endings in the colon so no pain. It worked for me :D

    Enjoy your holiday. Cambridge is lovely.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Despite my triple therapy I am in constant pain - I'm used to it now and content that I cannot remember living a pain-free life. Cambridge is lovely, I hope you are able to get out and about and enjoy it (the students are a nuisance, however, flying hither and thither on their bicycles!) DD

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