Aghhhhhh

Aghhhhhh

well it's a few weeks post mtx and in a really big flare. Was on 10mg of pred for a couple of weeks and now reducing dose down to 5mg. Still haven't heard back from rheumy and not sure when I will, but oh my goodness I am in a world of trouble. I only just made it through this week and am not looking forward to the next few months feeling like this. This little meme I made describes exactly how I feel about everything.

58 Replies

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  • I like your 'meme'

    Gentle hugs :-)

  • Thanks Emma-79. I hope in the coming months I may start to feel better when I get to try biologics

  • Can you call you physician and ask if he might up your prednisone dosage for the flare? If not ask what he/she recommends?

  • It started before Christmas and they upped my dose to 10mg a day and told me to taper off down to 5mg again which I am nearly at now. As i taper I am getting back to where IO was a few weeks ago and the costochronditis is coming back with a vengeance. I am going to ring rheumy this week because I am struggling to work full time consumed in pain.

  • I know how you feel. So glad you will calling your doctor. No reason for anyone to be hurting so much.

  • They have all been on leave so only GP and he will not go against Rheumy directions. I am hoping rheumy is back next week so I can up the dose again. I am not booked to see him until March, by which time I will be so bad I doubt I will be able to even walk.

  • They should see you before then. I had similar experience last jan and I'm still not right. You shouldn't need to see rheumy to start biologics, just for them to ok it and maybe go through things with a nurse. I do hope you can get sorted very soon.

  • I am in Oz they do it differently here. Have to have tests again, see rheumy in the clinic etc. Registrar said before Christmas she was sending me the blood test forms but they still haven't turned up so my guess is it will be February when I get that and then a few months more. Not sure how I will cope and I have to go for a 3rd Cardiac ablation in Feb which will add to the stress on my body. My greatest fear is that I won;t be able to work.

  • I hope you'll get somewhere soon. I stopped working a few years ago, but I was an ok age. I could have retrained like as a counsellor for a job I could do from home. If id been younger that's what I'd have done. Small consolation at the time but since I retired from a high pressure job I've been better, that is until the medics fouled it up.

  • I am already trained as a counselor I did it for 12 years but I had to take a break from it. I can't retire I don;t have enough money to which is why I need to keep working. I love my job and it is not physically taxing it is just my body not cooperating.

  • Hello, I can only suggest that you contact your Rheumey clinic or your GP as soon as possible to discuss how you are feeling. My GP gave me a prescription for pain killers to take whilst I am reducing the prednisilone dose and waiting for my next medication to take full effect. I was on 20mg prednisilone and had to reduce the dose by 2.5mg every 4 weeks. It can take up to 12 weeks for MTX to fully work, you can usually start to feel the benefit after 3-4 weeks, but everyone is ry different plus it depends if you are on any other medications. NRAS website also have a helpline so you could try speaking with someone there if you can't get a hold of your GP or Rheumey Nurse.

    Good luck, I hope this helps.

  • Thanks Angel=delight. I had to stop MTX after 9 weeks due to adverse effects which is why I am flaring now, it tipped me over the edge and added costochronditis along with the rest. I am hydroxy but I don;t think ti has ever done anything for me. I am going to ring this week as I can't wait until March like this.

  • Hi, I was taking mtx and hydroxy both gave me adverse side effects which is why they tried Enbrel injections, which worked really well until I had to stop them due to other health issues. When I came back to Enbrel they didn't work. I was told that does happen. I am waiting to start Toci infusions so we do have have other choices. Sorry I don't know what costochronditis is? My GP put me on Oxycodone 10mg in the morning and 30mg at night as well as prednisilone and warfarin. I have a prolapsed disc which also gives me a great deal of pain and I have an epidural in my lower back for that which also works very well. The specialist will not g/tee the outcome if he operates. It is always best to see your GP as they have all your medical history and know which medication they can give you. Good luck getting in touch with your GP, March is too far away to be suffering with so much pain.

    Take care.

  • I am a bit if a pain when it comes to medications I have multiple chemical allergies and cannot take anything that is opiate based or has codeine in it. Costochronditis is inflammation of the ribs' junctions to the sternum that causes chest pain, it is quite debilitating on top of the rest of my achy pains. It seems most if us seem to have complex issues and I sometimes wonder if the disease is a result of this or the other things are a result of the disease. Who knows.

  • Hi again,

    Some say that RA or RD as some like to now call it, effects your immune system which causes all kinds of medical problems from reading various helpful posts on here. A lot of us don't just have RA but a list of health issues which makes it difficult to treat RA/RD. Costochronditis is, I have learnt something new today.

    I find this website very helpful and very supportive. Take care.

  • It is an autoimmune disease so my guess is it triggers other things to go wrong. Just my uneducated guess but it seems to be what happens. I have had chemical allergies for quite some time among some other things and then this hit almost 3 years ago. It is all just weird. Yes it is a very supportive community and we can learn lots form each other and most importantly get support. Nothing like someone who is going through it to be your best listener.

  • Why has the mtx been reduced, when I have a flare, my rheumy nurse increased the dose age which really helped. So sorry to hear you are suffering

  • Hi Mary1310 I have come off mtx completely as I had an adverse reaction to it.

  • Lots of times when you try to reduce Prednisone your body reacts, for myself 5mg is huge, it means the difference between pain-full joints and pain-free bliss. Although I can not give you any medical advice, I would check with doc to see if you can taper back up 5mg, then try again in a few weeks to taper down, your body may not be ready for the reduction in Prednisone, it can be a bugger getting off it, the longer you have been on it, the harder it can be. I did alot of reading about the drug. 5mg is the normal daily amount that your adrenal gland makes, sounds like you may not be ready to return to normal levels as you are fighting a disease, and may need a med boost to get you by until the flare subsides.

  • I have tapered down to 5mg My optimum dose where I can cope is about 10mg but I have been told to taper down to 5mg. I told the registrar at the time that I will not cope on that low a dose but she didn't seem to worry about that.

  • She is obviously is someone who doesn't feel the pain or have to live with RD. I wonder if you can split a pill in half and do 7.5mg first before you go down to 5mg, at least it wont be such a drastic tapering down, it will be more subtle, the little extra may make it tolerable. Then if you can tolerate 7.5mg for a few weeks, then try going down to 5mg. Obviously your body is recognizing the drop, and tapering off predisone can be tricky .

  • Thanks Hobbits. I have done 7.5 for 2 weeks am down to 5mg today and I am feeling like hell. I am seriously wondering how I am going to get up and go to work tomorrow. Oh well, one foot in front of the other I guess. I am also now back taking paracetamol every 4 hours just to be able to walk along with 100mg tramadol at night. It is a vicious circle as this will impact on my liver again aghhhh I just can't win.

  • wishing you good luck at work! and also hoping your meds get sorted, so you can get back to feeling better.

  • I called today and he is back and has given me an appointment tomorrow, Thank heavens. I struggled through today, 4 days to go until the next weekend!

  • That's great! He needs to see you as you are & see for himself I mean. Hope he's able to sort you out.

  • I was so relieved. At first the receptionist told me he was overseas until the end of Jan and I just started crying, very unlike me, thinking of how I would manage. Them she says I will juggle his appts for Feb and get you in and ring you back with a date. She rang back an hour later and said I got confused and he will see you tomorrow. I just hope he lets me up my pred until they can sort something. One day at work and I am already feeling like it's Friday afternoon.

  • You're obviously at the end of your tether releasing emotion like that you poor thing. As you say hopefully maybe upping your pred & hope he get's hurry up on to get you back on track. Sending you calming vibes & the gentlest of hugs (())

  • and at work I was so embarrassed. Yes 5mg just doesn't do anything for me when I am in this state. Thanks for your support, it's good to talk to a person who understands what we go through.

  • Nooo, don't be embarrassed, they know you have good coping mechanisms as we know here & to do that is a physical reaction which means you're beyond the coping stage. Can you speak to someone to see if you can ease down on your workload a tad until you're past this cr@ppy stage. I appreciate you need to work but something's got to give a little & it shouldn't be your health that suffers most. When does your h get back?

  • I think it is the fact that I am in such pain and not getting any break from it that has exhausted me. I can't really afford not to work full time and I have to save my leave as I need it later in the year for a shoulder op. I will have to take a week off when I have the ablation too, so I don't want to take any time off now. i think if I could manage the pain I would feel so much better. H is away for another 5 weeks and when he comes back has to face up to the fact that he probably has prostate cancer. so I guess I will have to be his nursemaid!

  • Oh heck, that's the last thing either of you needs. You'll get through it but it'll be a struggle. If you really can't afford the time off work is there any way your work could make things easier or less challenging for you? Do you have to use your holiday entitlement for your surgery & ablation? No wiggle room for such things, illness & medical intervention, they are necessary after all & it seems unfair if your time off has to be taken out of your holidays. What if you needed further recuperation time & it eats up all your holiday entitlement?

  • Work isn't a problem I love what I do, it is not physically taxing it is just that I am so exhausted and in pain. If I can go back up on steroids it will help as I won;t be as tired form the pain. I may have to use my holidays if I run out sick leave and if I then run out of that, can buy some from next year. Only problem with that, they then take it back out of your wages and I really can't afford to pay any more bills out of my wages. eeekkkk

  • Mmm, sounds like you'll have to try & weather the storm, or at least do nothing at the weekends except rest in readiness for the week ahead. It's so difficult isn't it? You really need that increase in steroids & just hope there's no delay in starting treatment. How rubbish are things at the mo?!

  • Well I get to go back up to 7.5 mg pred, start imuran and he will book me in for the biologic clinic. I have to have tried 3 DMARDS prior to being allowed to take biologics, His concern is imuran may further damage my liver. oh well here we go again!!!!

  • Oh do you know, isn't it crazy?! This qualification needs elastic parameters doesn't it? The logical thing should be as long your Rheumy considers you a suitable candidate he shouldn't have to risk further damage with another DMARD before he puts you forward for biologics, it's mad. I understand why but there should be some give, you have tried MTX after all! Anyway let's hope the increase in steroids give you a break from feeling so rotten.

  • it is silly and he is quite worried about further damaging my liver but he has no choice. I have tried arava and mtx, can't do sulfa as I am allergic to sulfa drugs so imuran it is. I am hoping upping it again will help too because I don;t think I could really feel much worse than I do right now :)

  • Love it! You feel rotten but still end on a smiley! You are a positive person but I know how it is. Hope the steroid eases your pains. :)

  • I try and keep positive because the day I don't, is the day I won't ever get out of bed.

  • I'm late coming to this SOM. If you can't reach your Rheumy nurse present yourself to your GP, see if he still thinks it is acceptable for you to be in such pain taking into account the stress & strain 're your heart issues as well. Surely to goodness there's something within his remit he'll be able to suggest to get you through this, something to bridge the gap until you can see your Rheumy to start biologics. I had a 2 month wait until my last Rheumy visit & my GP increased my steroids as a stop gap after I started to flare towards the end of tapering. If I'm remembering right your likely start date for biologics isn't til next month & little by little in the meantime the MTX will have left your system & with tapering the steroids that will leave you with little to tackle the inflammation.

    I love your meme! Very descriptive, you could do with printing it out & putting it on your GP's desk!

  • I was told that they will try and get me in to an clinic late Jan early Feb but haven;t heard anything, My guess is then it is all the paperwork etc and a while after that you get approved so I have no idea when they would start. I am so inflamed I had to get my wedding ring off yesterday as it was strangling my finger. So I know 5mg is not cutting it. Time to place a call.

  • Oh know how is. The last time I was nearing the end of tapering deflazacort mine swelled so much, it was over the weekend & my h wanted me to go to A&E but I knew they'd hack at it so insisted on waiting until the Monday when a jewellery maker we've used would cut it off more sympathetically. Meantime my finger turned blue.... he got it off though no problem & made it larger for me. You get ringing! Surely they know left unmedicated you'd become uncontrolled & so have pain & swelling? Seems odd to just leave you with no definitive date to start you're new treatment. I understand why the need to stop your MTX but I would have thought they'd fine tune tapering & the end of the steroids to coincide the beginning of biologic treatment so there was none of this to cope with on top of your GP issue. It's obvious from your writing this has become too much, none of your usual coping mechanisms. The Registrar's the one who should see you as you are now, then let's see if she still thinks dropping the dose so low is something to worry about or not. I'll afraid this is another case of us knowing our bodies better than the professionals. :(

  • I took nearly all day with numerous attempts to get to get it off using various methods. My finger was very red in the end. hahahahah My rheumy has been on leave and I will be ringing this week. I started going to him privately because I cannot stand the registrars at the hospital but that is all I had to deal with while he was away.

  • Oh, my h did too. Even the olive oil & thread trick 2 nurses in Spain did before my carpal tunnel op didn't work!

    I hope you get your Rheumy, I'd try first thing Monday morning hopefully before he gets his lists.

  • Yes I was thinking wow what will happen if I have to wait to go to a jeweler I did think I would have to go to A&E if it got any worse and I couldn't get it off! hahaha

    I will call his rooms it is often a better way to get him.

  • No advice to add to others but just to say I relate to your Meme - this is how my hands, feet, arms and legs and my face all feel most of the time presently with the neuropathy. I really hope you can see your rheumy very soon and don't have to quit work for a while. But stressing about this will be adding to your misery so maybe worth speaking to your workplace about it and warn them that you're waiting to start a new med regime? Tx

  • Yes it must be hell for you. It is the best descriptive picture I found of how I feel inside. I cannot give up work, it is just a struggle at the moment, and I have to just suck it up and get through.

  • I am self employed so it's easy for me to say but can't you at least speak to your manager/boss or fellow staff about your present predicament so they can help and support you if you need rest or whatever?

    Thought about you as just back from local art-house cinema saw a very poignant and beautiful film - "Charlie's Country", a new film by Rolf De Heer (Ten canoes) starring David Gulpilil (Walkabout, The Last Wave, Ten Canoes) in the title role.

    Have you seen it? X

  • I have told fellow workers I am in pain and my brain is not behaving as it should, quite embarrassing really, anyway I will just have to get on with it I am afraid,

    I haven't seen it yet. I don;t go to the cinema I can;t sit for that long it kills me. So I wait for things to come out on DVD. I read a review of it and it was a bit scathing! I really like David Gulpilil as an actor he has a very powerful presence

    abc.net.au/radionational/pr...

  • Really I'm surprised it was scathing as it was a well made and well acted film - but then I've never been to Oz and so I probably wouldn't see the bigger picture culturally or politically. But as a film it was very engaging and David Gulpilil was wonderful. I admit I slept for five minutes or so and was extremely wriggly and uncomfy. Always a thought getting up out of the chair at the end! X

  • PS just read the review and not sure I agree. All I know is that I learned something from it as a total outsider and found it quite moving. Interesting though to read this critical review straight after watching the film - thanks for that.

  • I agree, I will watch it and then make a call. I don;t always believe what one persons viewpoint is I like to experience for myself.

    Racism is a big issue in Oz as is the treatment of First Peoples like my family. It goes deep and is still a shambles with worse than 3rd world living conditions, substance abuse and preventable disease rampant in Communities, incredibly sad. Let alone the dislocation with country, as a lot of us were ripped off our lands and stuck in missions and not allowed to talk our native language or conduct traditional ceremonies. The loss of culture has fed in to the problems. Pretty much what the film is about I think.

    That is why I can;t go to the cinema I cannot sit still it kills me and I can't get up afterwards. hahah feel like some ancient little old lady

  • I have just got his book, hope you find this of help. You have to run it to the start of the video.

  • I am not too sure how this relates to me and my situation. I don;t want to offend you, but I am not in to alternative practices and fanatical diets.

  • Pity, never mind, if you listened to it all you would see it relates to all of us with RD. It is not a fanatical diet but solid scientific facts, but hey!

  • For what it's worth I've just watched your video and found it interesting and quite thought provoking although nothing I haven't actually heard or read before - some of his statistics are quite astonishing! However it is very much geared towards an American audience and is primarily criticising the American food and pharma industries - which could be increasingly/ worryingly relevant for us with the Transatlantic Trade Agreement presently being pushed through by the EU.

    But most users of this HU community are UK based and I believe we still have many more safeguards in the UK to ensure that our food is what it claims to be and it is still possible to find food that is not contaminated by Glyphosates etc and long may this be the case. And this is still a man wanting to sell his books and products/ supplements so at the end of the day it's important to remember that this video is still something of a sales pitch for him.

    However this is Someone'smother's post and I think it's important to comment on a person's post with relevant material to what they are saying, off-loading about or needing support/ advice with. So I am really not sure why you posted this video here on her post when it has no obvious relevance? Although by strange coincidence this topic of food contaminates does have a certain relevance to the film we were just speaking about earlier but I don't think you knew this when you uploaded this video!

  • Call me cynical but I watched many, many cancer patients being gypped by snake oil salesmen selling their very expensive 'cures' sending the families broke and losing their homes and I am very very wary of anyone who has found a 'miraculous' cure and isn't offering their knowledge for free.

    Our government is also selling us out with a so called 'free trade' agreement to big pharma and food from other countries but the ink isn't on the document yet so maybe there is some hope. Our country will be flooded with generics from India and I am one of those who is intolerant to their fillers and will never take them.

  • Hi someonesmother,

    Sorry you are feeling so bad at the moment but love the meme!

    Regards

    Beverley (NRAS Helpline)

  • Thanks Beverley, Hoping I get a little light in the tunnel today, seeing rheumy. Feel free to use it I made it the other day. Being creative takes my mind off things,

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