Feeling blue

On Monday at my rheumatology appointment the decision was made to stop my abatacept. If that wasn't bad enough I've actually tried everything else and I mean everything. For the last 14 months I've battled to control my immune system & it's won for now. You name it I've tried it. In the last 14 months I've had rituximab, toxciclumab, abatacept. So I've had a steroid injection (number 8) and I wait to hear what's next???

15 Replies

  • Hi Rachel

    So sorry to hear that things aren't good. Have you tried changing your diet? Eliminating meat, gluten , sugar or dairy? Eating less processed foods and more organic? Worth experimenting with if you haven't already. Or seeing an alternative therapist if you can find one that's been recommended by a friend?

    But maybe you've already done all of this? It's helped me which is why I suggest it. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday!

  • Hi Matilda. I don't eat any processed food & ive cut out bread & dairy. Not tried an alternative therapies but have tried yoga & meditation. Will try anything at minute. Thanks x

  • The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982! Sugar also is a problem for me...I vary in how strict I am depending on how my joints are..and although diet alone worked for years I now need MTX, and have also tried Enbrel but had nasty injection site reactions. I've fought RA for almost 40 years and mostly, until fairly recently, without the help of drugs, and think it's worth persevering with alternatives to lessen the burden.

    Do you have high CRP and ESR? They might well respond to diet changes. There was an interesting 'food hospital' programme a few years back which looked at this.

  • Day 2 of not eating meat. Is it ok to eat fish or do l need to cut that out too? Completely failing at cutting sugar out as my daughter made a Hugh batch of cakes & mars bar cake & I couldn't resist x

  • I eat fish. Hope you notice some improvement and speak gently to your daughter to see if she can support you in cutting sugar....not easy to do when there's tempting food on offer. I have to ban it from the house!

  • I've got such a sweet tooth. Think I could cope with not eating meat. I've got a high esr, low white count & low neutrophils. Apparently my white count & neutrophils are low due to the abatacept. Same happened with the toxciclumab.

    Will definitely look at reducing my sugar & meat.

  • I'll be interested to see what you are offered. I tried Abatacept after many DMARDs and bios and it took 9 -12 months and addition of 200mg hydroxy (only DMARD I can tolerate) after 6 months and a couple of steroid joint injections (at 9 months) for it to have enough of an effect balanced against what I had been like rather than normal. Had to stop to have a TKR and it is struggling to get back to that level - just had a course of oral steroids to help but we shall see. My team did give it longer because of what else would be available for me at the time. Farm

    Abatacept has given me periods of low counts and for no reason they seem to rise again .. until the next time they fall.

  • Farm123, I'm the same as you I think. I've too have had all the usual Bio''s plus MTX and Sulfa....I'm on oral steroids since the early summer. They do seem to keep the RD at bay....well up until recently anyhow. My Rheumy nurse told me I may be going on Gold Injections or another drug that I just can't remember the name of just now that is used as an anti rejections drug for transplant patients. She reassures me that as soon as something else becomes available I'll be on it.......BTW I'm sero-negative if that makes any difference.

  • I'm sero neg as well. I was on Gold injections before I had my daughter 15 years ago so cannot remember that much about it. Farm

  • I do know how you feel although I've never been offered the anti tnf or biologics. I've so far had allergic responses to four DMARDs and feel vaguely abandoned now as my shapeshifting autoimmune disease has changed course and is making me miserable and unwell again. I'm just on a very low dose of Prednisolone now and so far no one on my medical team is prepared to offer me further immunesuppression because of the severity of my intollerence a to date. It's just a case of wait and see where this goes. If only my autoantibodies represented me better I'd be re-diagnosed and offered alternatives.

    I too have tried all the food and natural therapies. The only thing that works for me is keeping my weight down (hard on steroids) and exercising daily but it doesn't stop the pain or the fatigue.

    I hope that they can perhaps trial you on something new? There are new drugs for RA being invented all the time so please don't despair.

  • Hi I've just had a call of my reumy nurse and she has assured me that if this rise in my metx from 20mgs t 25mgs and adding hydrox doesn't work then it will be biologics for me so I will give it a try for a couple off months to see how it goes I've had a steroid inj to tide me over but they only last for a couple of weeks , I've calmed down a bit since my appt on Monday but still not happy about getting somebody else's notes on my notes for my doctor. This is what happens when the consultant is rushing through appointments

  • Me to - but I am on Methatexate as well as all the Biologics Ive tried that don't seem to work on me but do seem to work on other people. Would love to know what else they are going to suggest for you. Steroid injections are wonderful but like all things wonderful they are not good for you !!! take care xx

  • Been on methatrexate too, sulphasalazine, naproxen, humira, enbrenel, the list goes on .........

    Waiting to hear what's next.

    I'm sick of feeling sick.

    Only been back at work 8 weeks following 9 months on sick.

    I hate this disease & what it's doing to me.

  • Well I'm going back to work a week on Monday to see how I get on, I've been offa couple of months now but I need to try and get back into a routine plus being off I think is making me more depressed, ps(my wife will be happy because I think I'm starting to get on her nerves)

  • Know just how you feel Rachel......I was talking to my brother who lives in the States and he has been telling me that there are a few new drugs for RD advertised on the telly over there......I was over in the early summer and was amazed when I saw Humira advertised on TV.....I sat with my mouth hanging open unable to speak, something very unusual for me I can tell you! Of course they don't tell people what they cost! Anyhow he said he will write the names down and send them on to me so when he does I'll post the names on here.

You may also like...