Feeling fed up... little bit of a rant, sorry in advance!

lozzC

I went to see my consultant last weekend, after they have cancelled 6 weeks in a row and I am still no further forward.

I posted a couple of months ago saying I was struggling with my Meth and I am still no further forward... I am struggling to eat on these tablets and when I do keeping it down is a challenge...

Although being sympathetic and commenting that I have lost too much weight too quickly... other than giving me a steroid injection, she said she couldn't put me on anything else until after Christmas...

She has told me that she thinks I would be a good candidate to start Anti-TNF's because the meth hasn't stabilized my bloods at all and I can't eat. But she is putting me on Sulfersalazine first as she can't put me on the Anti-TNF's first?
From what she was saying to me she is expecting me to have even more side effects to the sulfersalazine than the meths? and she is putting me on it to prove something? She even said that she doesn't expect to see any change... But this seems like putting my body through more to prove a point??
I am fed up of having RA and I am fed up of feeling like a guinea-pig.
When I talk to my GP (who is lovely) she always suggests being signed off work, but to be honest, I look forward to going to work, it makes me feel... almost normal for a couple of hours a day.
Don't get me wrong, I am always exhausted and I struggle with pain. But I feel like if I give up then I am letting my RA win... and I am not willing to do that....

I was just wondering if anyone has any advice from coming out the other end. I really want to stay positive, but getting closer and closer to Christmas I am finding it harder and harder!

Thank you Lozz

stickywicket

That seems a huge amount of cancellations, Lozz. I hope they gave you an explanation and apology.

I'm sorry you're still feeling rough on meth. I guess your rheumatologist will have done all that's possible in the way of advice, folic acid etc so I can only sympathise.

Now, I’m not sure about this but I think everyone has to try a couple of DMARDS before they can be put on anti-tnfs. That’s because anti-tnfs cost so much. However, it’s not very encouraging if your consultant says she doesn’t expect sulph to work. Why not? It works for others.

I don’t quite see why you feel like a guinea pig. These are all tried and tested meds. It’s simply a matter of finding the one that works for you and that, unfortunately, can take some time. There is no test that will determine it in advance. We just have to suck it and see.

I think we all get fed up of our RA or PsA or OA or AS or whatever but we are as we are and it isn't going to go away. The meds will help when you get the one that works for you but it is a bit of a lottery as we’re all different.

Meanwhile it’s good that you’re able to work still but don’t push yourself too far. Christmas is a busy and stressful time for us all and not good for arthritic joints.

barbara12

Oh Lozz I do feel for you, and gosh do I understand your frustration at having appointments cancelled , I am sorry I cant offer any advice has I have OA, but I am here to read your rants and don't mind one bit if it helps you..Im a big believer in talking and getting it all out...wish I could help more...(((((()))) xx

Nicchick

It is because the guidelines say that two DMARDS must have been tried and have failed before you can be assessed for anti-tnf therapy. I've had a long battle to get onto Humira which has been tiring and has been ongoing from May. I'd been flaring since February after a brief period in remission. Been on both Meth and Sulf with mediocre results on inflammation although my bloods weren't too bad on them, feet were like 'little trotters' to quote rheumy nurse!

Good luck and I had no side effects from Sulf apart from orange pee but were are all so different so just see how it goes. The fact we all react so differently makes this so hard to treat.

Nx