Help and advice needed with RA and my Humira treatment please ....................................................

[beckybooboo]

I am currently on steroids 12.5mg since Jan 2014, take oramorph and co-codamol, started Humira 6 weeks ago but am not feeling any benefits at all yet, I have had RA for 2 1/2 years now, tried methorexate for over 6 months but caused really bad deep depression, sulphasalazine for over 6 months but had to stop coz it affected my breathing..... previously hydroxychlororquine but again to no avail........................................

I go back to Rheumy mid October, so where do I go from there?????????????????????????????

Do I ask to have Humira increased weekly as currently every 2 weeks?

Ask for Lefluomide?

Or ask for Enbrel?

Your comments would be gratefully appreciated, I truly don't know where to go from here and am sooooooooooo FED UP waking in pain, walking in pain, sleeping in pain and trying to live with pain!!!!!!!!!!!!!!!!

Sorry for my negativity, I thought I could start looking for a little job and try to change my life after raising my 4 kids, lost my last little job 2 years ago coz of this illness, makes me feel unhappy, I want to be able to feel part of something rather than just unwell me, I get DLA low rate, tried to appeal last December but was turned down, Im now wondering whether to try doing a change in circumstances as my illness has certainly progressed, just feel so lost, my head wants soooo much to be active but my body lets me down....

Sorry all, love, light and positivity is sent your way, we all have to keep fighting, but sometimes you just feel a bit bloody worn out ....................................

xxx

[HelenCole]

Hi, I was diagnosed with RA 7 years ago and tried several dmards which did not work before being put on humira (injection every 2 weeks). It took 3-4 months to really start working but when it did it changed my life. The swelling, pain and fatigue was gone. Only real side affect was a constant stuffy nose but I could life with that! So I suggest you persevere for a few more months and I really hope that you have the same results that I had! Good luck!!

One thing to mention is that I had to stop taking humira to fall pregnant with my daughter and sadly after she arrived, it no longer worked for me. Apparently this is fairly common but if it does start working well for you, I wouldn't recommend taking a break (unless you really need to). Embrel didn't work for me and now I'm pregnant again so managing with prednisolone and will start the journey to find something else to help next year after this one arrives.

I hope that was helpful and I hope you have some relief soon.

[beckybooboo in reply to HelenCole]

Thank you for taking time to reply, its so hard but im pleased to hear that after a few months you got results, yeah all so difficult and I can empathise so much with this illness and a young family.

I so hope you find something in the future that works........ Incidentally whilst your pregnant do you go into remission?

Really dont like the prednisolone but hey ho what can we do?

Best wishes for you and your family and thank you for your advice. xx

[HelenCole in reply to beckybooboo]

Thanks Becky,

Yes is a certainly challenging juggling the disease and a toddler but I am very lucky to have a very supportive family closely! Thank goodness

My first pregnancy was very straightforward - i haven't been that well in years. RA in complete remission. I guess I had expected the same thing to happen this time but that wasn't be ! Ce La vie! I also hate Pred but need to retain some function to juggle my toddler, work, house etc!

Plan is to start Tozilimumab infusions after the baby arrives - banking on that working!

Helen

[Zigzager in reply to HelenCole]

I have that stuffy nose too! Very annoying! Sry to but in but good to know others in same boat with Humira.

[Hidden]

I just love the photo, it's a bit special somehow. I don't think I can be much use though, just some thoughts to add. I have PsA, not RA but I've been diagnosed for a similar length of time.

I too am on Humira, my first biologic, and have just taken my third fortnightly dose. As I understand it, it can take a few months for Humira to really help, so with luck you might be due some improvement soon. But your rheumy will reassess you after 3 months I think? It's likely that he or she will be thinking in terms of a different biologic if you haven't benefited significantly by then and perhaps Enbrel will be a contender, though there are plenty of others for RA.

I'm sure many will relate to the desire to 'be part of something' and I so hope your rheumy can help you get there. Sounds as if you could address pain control at your appointment, it may be possible to find more effective drugs for that (not necessarily stronger). I understand that you're struggling, but are you able to do a little regular exercise at all? I think 'regular' is the key and exercise of some sort can help with pain and fatigue, though you do need to keep at it for a little while to see results. I'm thinking strolling, possibly swimming or anything else that suits.

You don't sound negative at all, incidentally, just understandably a bit fed up and searching for the best possible treatment. If you even suspect that your rheumy thinks you're quite happy to take a back seat in life & simply put your feet up, do put him or her straight! I think rheumys need to know our goals loud and clear and sometimes re-double their efforts when they know 'who we are' and how much we want & need change.

[beckybooboo in reply to Hidden]

Thank you for your reply, lets see what happens at my next appt, time will tell eh?

I do try to walk my dogs each day but to be honest they nearly pull me over! used to be strong but can no longer do it....

Your so right though about the rheumy - I just dont find my listens very well but I wont stop trying to be heard............................

Yours thoughts are appreciated xx

[dillie]

so moved by your photo too i had to write something to you!

i was diagnosed a year ago, still struggling with finding the right meds, terrible side effects, endless appts - feel so fed up! i can so related to your words about wanting to do things but being held back by RD! the exhaustion and fatigue is really hitting me hard now, i really sympathise with that.

i have no experience of the anti tnf's so i can't help with advice on the meds, but just wanted to say hello beckybooboo, you are not alone, and i hope you will find the right meds soon!

enjoy what you can, keep smiling, love and light returned straight at you!!

[beckybooboo in reply to dillie]

Thank you , thats my lovely Nanny who has now passed away but just had to post it, the love in her eyes for my youngest is so pure, she always looked at me like that!! Gonna stop now or else ill cry.....................

Fatigue and emotions yet alone pain are so hard but onwards and upwards... thank you for your reply.

Warm regards, and so hope you get the treatment you need, research everything, get up to date info and go in with all the info you can with your Rheumy, they feel intimidated I think when we start asking for what we want....... good luck and warm wishes xx

[Hidden]

Hi beckybooboo,

I've had RA for 27 years, sometimes can't believe it's been that long. At the moment I'm only taking 10mg Leflunomide, but hoping my rheumy will put me back on Methotrexate when I see her on 8th September. I had to stop in January 2013 as I was due to start chemo in February 2013. Really need to be back on it now though as RA is very active again, and 10mg Leflunomide does nothing really. Hope you get your meds sorted out soon.

[nomoreheels]

Sorry, I can't offer any help but just wanted to say what a beautiful picture you've posted. Your daughter's beautiful gaze is so lovely, almost angelic! Your Nanny looked a kindly lady & sure you must miss her but she'll be looking down so proud & happy you're sharing it.

[Hidden]

Hi becky,

It took about 3 months on humira for me to notice a real difference. I started mid April and I'm finally seeing a shift in my symptoms. My rheum clinic said they expect you to try 6 months on humira before they increase the dose but please be aware that hospitals vary in their approach.

You've very early days and I know it's hard but try to be patient. I imagine they won't make a decision about treatment until 12 weeks anyway.

Best of luck!

[beckybooboo]

Thanks for your reply, yeah I wasnt expecting them to change anything before the 12 weeks really think theyll make me wait 6 months - they are very slow at coming forward................... I just thought id have felt a bit easier by now, never mind I have my appt mid Oct so will take it from there.

With what you say there is still hope that it may work for me yet?

Thanks again for your reply x