Enbrel am I doing something wrong?

shadowlady · 12. Apr 2011, 08:34

Hi folks
I have searched back to the beginning of the year and can't find anything relating to my queries so sorry if these questions have been asked already.
Also I know that people on here are users of Enbrel rather than specialists but sometimes it helps to ask other opinions!!

I started Enbrel 5 weeks ago (just done my 6th injection today), injecting into my thighs. First week was brilliant.!!
But since then twice I have come up with bruising at the injection site and I wondered if anyone else had this problem in the early days?
Also the first couple of days after an injection I get good results and can cut back on my painkillers, I use tramadol 50 mg twice a day and 2 paracetamol 500mg 4 times a day, although my GP wants me to stop the tramadol. However the pain control don't always work controlling the pain especially towards the end of the treatment week. The Enbrel seems to run out of effectiveness before the week is out, is this something that others experienced and is likely to go away once I am really established on the injections or should I be flagging it up now with the specialists?

I am not due to see the specialist nurse until mid June and my Rheumy early July and I don't really think my GP is up to speed yet with Enbrel as I am his first patient to go on to it.

I used to take Sulfasalazine but took a reaction after about 12 months and came out in massive hives and my face would swell up, then on a different drug Azathioprine which stopped working after a year, then back on to Sulfasalazine and it wasn't so effective and now on to Enbrel. Because I am an ex smoker and so have some lung problems they have to be careful what drugs they try with me. :sad:
I really want the Enbrel to work for me but am struggling at the moment.

Hope someone can help or suggest something please.

debsmartin · 12. Apr 2011, 09:29

Hi

I have been injecting with enbrel for nearly 6 months now and I am the same as you, sometimes I get quite a bruise and it also sometimes bleeds and has a lump under it, then another time I can inject and you can't even see a mark. I did ask the rheummy staff and they said its sometimes when you hit a bigger vein under the skin.

I'm the same with my monthly blood tests though so its nice to hear that someone else is the same.

I seem to also get different results my husband jokingly says I sometimes must get a bad box. I am really pleased with my enbrel results though, hope everything goes well for you

debs

scattered · 12. Apr 2011, 11:50

I don't think you're doing anything wrong! It's just one of those things that you'll hit a blood vessel sometimes and not others. I've been injecting Humira for 2 years and MTX for 1 and still manage to hit blood vessels about every other week! I wouldn't worry about it.

For me the Humira on it's own doesn't last for 2 weeks. I ahve to take hydroxychloroquine and MTX to help 'cover' the days the Humira wears off for. It might be worth asking your rheumatologist for a DMARD to take in addition to the Enbrel.

PhillyCee · 12. Apr 2011, 17:53

Hi,

I have been on Enbrel for 4 years now and found it a life saver. I started injecting in my thighs but I suffered the bruising. I was told to stop using my thighs and only to use my stomach as it is easier to do in a fatty area. They were actually right for a change, no problem with bruising on my stomach.

I inject twice a week which I find works for me, kind of keeps me topped up. I do go through bad spells though when I need regular pain killers. Indomecatin and Bru Trans patches have worked for me and Accupan.

Hope this has been of some help.

Good luck and be well.

Phillyxxx

shadowlady · 13. Apr 2011, 11:53

debsmartin wrote:

Hi

I have been injecting with enbrel for nearly 6 months now and I am the same as you, sometimes I get quite a bruise and it also sometimes bleeds and has a lump under it, then another time I can inject and you can't even see a mark. I did ask the rheummy staff and they said its sometimes when you hit a bigger vein under the skin.

I'm the same with my monthly blood tests though so its nice to hear that someone else is the same.

I seem to also get different results my husband jokingly says I sometimes must get a bad box. I am really pleased with my enbrel results though, hope everything goes well for you

debs

HI Debs

Thanks for your reply its reassuring to see that someone else gets the same problem from time to time. :-) I guess its practice.
take care

shadowlady · 13. Apr 2011, 11:56

scattered wrote:

I don't think you're doing anything wrong! It's just one of those things that you'll hit a blood vessel sometimes and not others. I've been injecting Humira for 2 years and MTX for 1 and still manage to hit blood vessels about every other week! I wouldn't worry about it.

For me the Humira on it's own doesn't last for 2 weeks. I ahve to take hydroxychloroquine and MTX to help 'cover' the days the Humira wears off for. It might be worth asking your rheumatologist for a DMARD to take in addition to the Enbrel.

Hi thanks for your reply and reassurance, I spoke to Stan one of the specialist nurses up here over the phone yesterday and he said to see how it goes and to discuss it at my 3 month review if I am still concerned so I will see what happens.

take care

shadowlady · 13. Apr 2011, 12:02

PhillyCee wrote:

Hi,

I have been on Enbrel for 4 years now and found it a life saver. I started injecting in my thighs but I suffered the bruising. I was told to stop using my thighs and only to use my stomach as it is easier to do in a fatty area. They were actually right for a change, no problem with bruising on my stomach.

I inject twice a week which I find works for me, kind of keeps me topped up. I do go through bad spells though when I need regular pain killers. Indomecatin and Bru Trans patches have worked for me and Accupan.

Hope this has been of some help.

Good luck and be well.

Phillyxxx

Hi Philly

Thanks for your reply. I was told I could use my stomach but the thought of injecting in mine was a bit worrying as I am a big softy and didn't want to get bruises there but I will try it next week and report back here. :-)
After I spoke to Stan one of the specialist nurses up here yesterday I rang my GP and he has re-prescribed Tramadol for me so hopefully it will help until the effects of Enbrel kick in fully.

Its great to have a resource like this forum to ask opinions from others in the same boat as me. :-)

Take care

skezier · 16. Apr 2011, 12:52

Hi Shadowlady,

Forgive the late reply but welcome to the forum.

Use the stomach flower... much better as Philly said and though its not enbrel I do the mtx ones and so far so good....

It hurts less too......

Again like Philly said there is more fat there./.. in my case far too much.

Tramadol is good if you can take it and hopefully the enbrel will soon help you and you will get a good benefit from it. Nice to meet you. Cris x

shadowlady · 20. Apr 2011, 14:28

skezier wrote:

Hi Shadowlady,

Forgive the late reply but welcome to the forum.

Use the stomach flower... much better as Philly said and though its not enbrel I do the mtx ones and so far so good....

It hurts less too......

Again like Philly said there is more fat there./.. in my case far too much.

Tramadol is good if you can take it and hopefully the enbrel will soon help you and you will get a good benefit from it. Nice to meet you. Cris x

Hi Cris

Thanks for the welcome I tried the stomach this week and it seemed easier, but alas say too much fat but it didn't hurt much.

I am OK with Tramadol and now we are having a spell of warm dry weather pain control is fine.
Only another 3 weeks and then I get 2 weeks of dry hot sunny weather in Cyprus.

Thanks once again

Adele

Donna Mc · 20. Apr 2011, 15:30

Hi there, its good to hear of someone else having the same problems as myself. I have been injecting Enbrel for almost 3 months now and sometimes would hit a blood vessel which bleeds for a while and then bruises with a hard lump underneath (in fact almost every time i inject).I have to say though i don't mind as it is really working for me, for the pain and swelling. I have been told to do it in my stomach but i am slightly squeamish about the idea. I have this notion that it will hurt more. Does anyone else inject in their stomach and which is less painful. I have sort of got used to injecting into my thigh but it is the bruising. I trust Enbrel is working for you,
Donna x

dreamdaisy · 21. Apr 2011, 05:41

The stomach is a good option for injecting - I was told there are fewer nerve endings there and I find it absoloutely fine. One should not inject too close to the navel. When I was on enbrel I had to do two injections per week and use alternate sites. A good tip for thigh injections is to do them sitting on a bed, your legs outstretched: this relaxes the muscles and can make things less painful, unlike doing them sitting or standing where the muscles are under some tension.

Brusing is an occupational hazard: it would be so handy if all our little blood vessels showed up in green or summat so we coulds miss them but as they don't occasionally one gets a direct hit and bruising results. As for the drug lasting for a full week or whatever, I never found that they did. I am currently on humira (injected fortnightly) and of those 14 days I have perhaps six which are better, then it all tails off. The thin end of the humira wedge is upon me yet again, deep, deep joy. DD

shadowlady · 10. May 2011, 05:01

Hi
Donna and Dreamdaisy
Sorry for being so remiss in not replying sooner but for some reason I had not ticked to get notifications so didn't get any notification of your replies, !!! :sad:
Anyway I have been injecting in my stomach for the last 3 injections and it is certainly less painful and no bruising but now I am getting a hive coming up at the injection site, it can be very itchy and lasts about 3 days. I used to get masses of hives when I was on sulphasalazine but I think I can cope with one a week. I did this week's injection in the leg and didn't bruise but got a smaller hive than the previous weeks so maybe things are improving.
As for Enbrel working it is BUT very slowly, swellings in my finger joints are going down very slow, I use my engagement ring as a judge of how things are going, I had to stop wearing it as the joint on my engagement finger got so swollen I couldn't get it on and had to have my wedding ring cut off. I can now almost get the engagement ring back over the joint so hopefully another couple of weeks and things will be better, likewise on my other hand the joints are slowly going down and I can get rings back on some of them again.

The only big problem now is that when it is damp or raining I still get lots of pain from my knees which makes it difficult to get going first thing in the morning and through the day on the really damp days, (we live on the 2nd floor and no lift :sad:) and my painkillers don't work 100%. On dry sunny days I am much improved so hopefully things will work out for me in the long run.
Anyway I have 2 weeks of sun, sea and sand and also lots of relaxing coming up as we fly out to Cyprus this Saturday (14th May)

catch you all soon

Adele

dreamdaisy · 10. May 2011, 05:49

Be thankful that it is having an effect - that is the important thing, surely the rest you can cope with if the drug is working. I routinely don't wear my wedding/engagement ring now as I don't want to run the risk of them getting stuck. Remember, these anti TNFs are powerful meds and can cause all sorts of problems and reactions: I know that I am fortunate in that I am rarely affected by them but I do hope the enbrel works for you. As for the pain dullers - they don't take it all away, they only ever take off the edge. One adjusts, over time. I wish you well. DD

shadowlady · 10. May 2011, 06:11

Hi Dreamdaisy

Yes your right and I am thankful that it is having some effect and yes I can cope although some days it starts to gets me down and then I think there are people in a much worse condition than I am.
I like you will probably not go back to wearing my wedding and engagment rings routinly for the same reason I don't want to run the risk of getting them stuck, mind you I still have to get the wedding ring repaired.

Thanks for your thoughts.

Enbrel am I doing something wrong?

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