First Enbrel Blood Test Result after three injections. Sorry, a ramble.

[Neonkitty]

I am, I have to say, upset :-(. I have just had a little cry although my other fingers and knee (the ones not recently injected! or not since January) told me quite obviously, there is active inflammation there at the mo. Red hot knuckles which are stiff. They are the knuckles of a flare and I saw these fingers becoming damaged and deteriorating as I was awaiting starting Enbrel whilst the admin/screening results delayed. (I am not allowed steroid injections any more as apparently I have exceeded my quota and anyhow, they will mask the next blood test results. It is hard not to have them as they worked so well. It always faded after a few months. It was never addressing the problem of a failed dmard, existing like this on hydrocortisone injections.)

Although I did suspect there would be an increase in my inflammations given that my CRP just before starting Enbrel was 6 and my ESR 39 (very good for me ... My CRP was 31 before and generally my ESR mid 80s) but I know these lower results from the end of February were due to the hydrocortisone injections I had had to my knees and wrists in January and mid February, with the most recent injections being two weeks before the above lower ESR and CRP result.)

Today the nurse phoned me to say that my other blood results from 20/5 were fine but the ESR and CRP had gone up. She agreed if the Enbrel hadn't caught up with the flare as such this could happen and I was in flare so very badly for a month awaiting the start of Enbrel. She also feels my very good results at the end of February were affected and influenced by my hydrocortisones. If I look back in my results book they yoyo between good and bad depending on when the hydrocortisone shots have been. Always been the way.

I am just so sad the inflammation results increased this way after Enbrel shot 3, and I know I have only just taken my fourth shot of Enbrel the day after my blood test on Monday but you don't like to see them going up. I have had such promising signs so far in other areas. The majority joints are freer and relieved and in general no widespread inflammation of flashing pain as I had all the time. Relief and less inflammation and swelling has been very noticeable as from a couple of days after my first shot, so I had hoped with this very early positive reaction in many places that it might show good blood results. My nurse said I mustn't panic as I only had three shots then a blood test. Something is working as I can get out of the house and do things without screaming in pain or being in tears and I do have various old joint damage so know very well that my "fused bits" are not going to change. I wished Enbrel had taken this finger flaring madness down. Done more for the bad knees ... tissue inflammation. I just hoped it would combat a flare but as it has been flaring so badly I think the knee and fingers which haven't responded as yet are the ones which were most in flare and most troublesome.

If I think to how I was a month ago - bed bound .. Unable to turn over in bed and unable to dress or wash or even tear off a piece of toilet paper from the roll, my hands were so weak ... Crazy I know) and how I am now then that is a big improvement, but I am panicking it is not going to do much more, even though I have another eight shots to do before review with the consultant. Have to have my blood done in another month.

I think I am ... Probably wrongly ...comparing the way hydrocortisone effects me and patches me up so wonderfully (albeit not overly long lived) to how Enbrel is starting to work.

Anyhow sorry for rambling on. Would have been nice to have all these signs of improvement and release without the flaring fingers and knee tissue and naf blood results. I hope I don't sound too greedy or impatient, but those increased inflammations have upset me.

Love Julie xx

[Hidden]

I do understand Julie but I don't think you should be panicking yet at all. My consultant always says its the symptoms that count and he's treating me not my blood. Blood is important but not as important as how you feel. My ESR was soaring for much of last year until I switched to injectable MTX and then it came down to about the same levels as yours. I could never work out why it was so high when I appeared to feel fine apart from a sore ankle or an aching wrist or knee sometimes.

I think inflammation just gets out of hand sometimes when it's had a chance to build up and the DMARDs or Biologics aren't really designed to tackle it in the way that anti-inflammatories and steroids are ie they aren't short term solutions. I would trust the way you are feeling in yourself and the fact you can do much more since you started the Enbrel and pretend you don't actually know your blood results. That was the advice my consultant gave me but like you I find it very hard to square when I hear that they are rising. But do try because it sounds like it's working really well for you actually. Tilda xx

[Neonkitty]

Aww thank you Tilda. What a lovely message that has made me feel much better, thank you. As I say, I did suspect that things would be up in the inflammation area and these troublesome areas will likely be the last to improve. There is a long way to go but as I said such promising signs. I didn't think it was going to be a miracle cure given my joint damage but just thrown but the blood results but often they do fox you, as you say, when you think you feel right they are up and vice versa. Thanks again and hope you are alright and have a lovely weekend. Blustery and decidedly cool in West Yorkshire.

Hugs,

Julie xx

[Hidden]

Beautifully sunny here this afternoon and evening but still relatively cold. As long as the sun's out I'm happy - so easy to please! I meant every word although I've never had RA as badly as you but my ESR did get everyone including me rather worried! But the GP and consultant were both adamant about symptoms being more important and they are both very good so I really do think they must have been right. Tilda xxx

[Neonkitty]

My RA has been a nuisance of late, Tilda, but it is horrible whatever state it is .. It stops you in your tracks and makes you change a lot of what you do, and can be a nightmare until you can get in control of it. That's what we all wish we could od and strive for. I should have tried a biologic sooner but at least I am doing it now. It does freak you out when the ESR soars, and even mkrecthan so if you think you feel alright but you are very right about treating the person. My rheumy has often said that. I did suspect though with those nuisance fingers and knees. Cold night here. Whistling winds! Let's hope for sun for us all this weekend Julie xx

[Hidden]

Hi julie,

Don't give up on the enbrel working it can in some people take the full six months before its kicked in and working good. Sorry your struggling but hopefully your enbrel will work soon xxx

Take care x

Julie x

[Neonkitty]

Thanks Julie, it is working to some extent, but I guess the knee and the fingers/hands had very fresh flares and inflammation in them. I could see it happening whilst I wa waiting for them to sort

all the Admin out. I us pose if i disregard the blood test where the hydrocortisone brought down my inflammation so much, then my results are actually down quite a bit from the time before that, if that makes sense. I could feel things happening so

fast at first but as I said, these flaring bits are urging io a fight. I am trying to rest up as much as I can and not type too much which may abnky the amout of people awaiting for me to replace to emails at length but sadly I am not gouhg to do that at the mo. Easy to come here though and type a little. Hope you are alright, Julie and thank you for your kind thoughts.

Julie xx

[Neonkitty]

My flaring bits are putting up a fight I meant to write but couldn't see what I was typing in the little box again. Don't know why I can only use that sometimes! Anyhow I am still much better than three weeks ago when I was in agony to try move. xx