My Rheumatologist wants to commence anti tnf for my ankolysing spondylitis however because the degree of change shown on my xrays isn't within nice guidelines they won't allow it. As this is apparently common in female patients she applied for my mri results to be used as they clearly show how much the sacroiliac joints have deteriorated and that it's the right time to commence the treatment to get maximum benefit but they've said no!
How much worse does it have to get. The pain is relentless, the fatigue makes my quality of life rubbish. I am sick of fighting day in day out just to keep going. I'm off work because the pain and fatigue have got that bad. What can I do?
Sorry for moaning, just feel very fed up at the moment
Lisa
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sappy
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Appeal the decision and write to your chairman of the health trust or go to your MP and ask for help. It must be very frustrating for you and your doctor. Good luck with your appeal. xx
Hi thanks for your reply. My Rheumatologist is appealing but says that may take many months. She believes they have said no because nice guidelines are set to change in January next year and then I should get the treatment once those changes are agreed.
I am frustrated because I can't see my employer remaining supportive with such timescales thus I don't know what I'm goin to do.
Thanks again Lisa
I think Allanah is right. The rheumatologist can and will appeal on your behalf but a direct appeal from you in the form of a letter would probably mean more and be more effective in conveying your plight. Why should you have to suffer more damage in order to qualify when you could be on a drug that prevents further damage occurring? I really think this is appalling and shortsighted economically too and you should tackle it from as many directions as possible so seeing your MP would be a very good idea too. Best of luck. Twitchy
I would personally attack the issue before the change as those months may and I mean may cause more damage to your body . I would definately go to the pm especially as the protocol changes as when they talk to finance and hospital trusts things get done!!
As far as work you are covered by law due to disability . Have u been to occupational Health if you have one or have a union representative to help. Mine were amazing support. One point to remember is the drugs can take up to three months sometimes more to work. So the sooner you get on them the sooner they will hopefully work. So I would despite the changes still do a bit of pushing.
If you look at access to work, a goverent run programme it explains about changes to work areAs etc that might help in the meantime and long term. But if you are ill you can take time off work although I know we all try not too!! How it gets sorted for you soon xx
Mine rhummy had to apply as a special case, which luckily for me they agreed to give three months funding for. I have to show significant improvement within in that time for further funding though, which is a worry, but I have had two infusions and I do feel better.
Didn't meet full guidelines but I have lots of swollen joints and damage, bloods not that bad, don't know if I have RA, or PsA or any other, my diagnosis changes, but definitely have inflammatory joints....as for tocilizumab , I felt better in less than two weeks, now have so much energy and no longer pain in hips or knees and less in elbows . I have failed more than six drmads and was on Hurmia for 18 months, don't give up with trying it took me over a year to get drug but it was so worth it now just hope that I can get further approval why is it not enough that we have to cope with the problem without the paperwork on top, and still trying to live a life
Oh how frustrating for you. I don't know much about AS, although my RA does affect my SI joints but logic dictates that it's best to treat aggressively before more damage occurs.
I agree with getting in touch with your MP, it will be good to have someone like that on side.
I'm in the same position, with not being eligible for antitnfs because there isn't enough "damage" shown. I have a lot of disability and a very long history of AS symptoms, but so far it would seem that female hormonal protection has helped me avoid bone remodelling, even if it hasn't avoided inflammation and pain.
I would have thought that you would have met the criteria for "axial spondylitis" though, if you showed evidence of active inflammation on MRI (even if no real damage). Did you meet the other criteria for BASDAI (disease activity) scoring, etc? You may need to talk to your rheumatologist again about which antitnf he applied for - I believe that there are three that can be used for AS, but only one for axial spondylitis. The NASS helpline may be able to give more info about that.
It might be worth phoning the helpline at the National Ankylosing Spondylitis Society and getting advice from them - nass.org.uk Sally is incredibly knowledgeable and helpful, and you don't actually have to be a member, though it doesn't cost much to join and their magazine and forum are really great and well worth it.
Are you receiving any other treatment? Specifically, have you tried NSAIDs at full prescription doses? That is normally the first line treatment for AS anyway, and it can be really effective, as long as you can tolerate the meds.
Sorry to hear you're going thru the same frustrating situation as I am. I wouldn't wish it on anyone! I've tried both diclofenac and naproxen with omperazole and got limited benefit plus also take tramadol, baclofen and oral morphine and paracetamol for pain. Have tried the steroid injections x 4 and these things have kept it just about manageable until about 8 months ago and now it's just beyond anything I thought it would be. Done the two basdai scoring thingys 12 weeks apart and passed on that so it's apparently it's only because of the changes being presented clearly on mri but only just on xrays that nice guidelines mean i don't fit the criteria at this time?!
I will contact nass cos I am somewhat confused by it all it has to be said. I can't find the relevance to xrays on nice guidelines for anti tnf treatment for ankolysing spondylitis.
Thanks for your suggestions I will definitely follow them up.
Hi Sappy, sorry to hear you're feeling so rough. I've just been diagnosed with Spondylitis without the Ankolosing bit. Got it in my lumber region, saccral joints and pelvis. Its causing inflammation and pain all over my body. Going to start on the correct medication in August and will be getting wrist splints to help at work as I'm an administrator. The pain is awful so know how you feel. What do you take for your condition? Am just on painkillers at the mo - Tramadol, diclofenic and paracetamol x
Sorry to hear your having a rough time of it too, I wouldnt wish it on anyone.
Most of the pain and lack of movement is from my lower back, buttock/pelvis and upper leg. Also starting to get more stiffness and discomfort in my neck which is not good news. My hands and knees are also troublesome but would live with that if the other pain etc could be better treated.
I'm taking naproxen (can't take diclofenac long term as gives tummy probs) omperozole, baclofen, tramadol, oral morphine, paracetamol and have had 4 steroidal injections into my lower back/ sacroiliac joints. I think this is why my rheumatologist believes anti tnf is my next option.
What meds are they starting you on? Fingers crossed for you thanks Lisa x
Hi Sappy, I have the same probs with my neck, hands, knees and feet! Think my rheummy mentioned Salphazalazine to start me on. I take Omoprazole too with the diclofenic. Not helping my IBS with anti inflammatories but have to sacrifice that just to get some pain relief xx
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thanks Lisa x
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