Anti-TNF injections and infection

c4thyg

Hi everyone,
I'm wondering if any one can help answer this one for me. I take Enbrel injections and I know that you have to miss a dose if you have an infection. The problem I have is that I'm not sure if I have an infection! The symptoms are so different that I'm not sure. I think I might have a sinus infection but my GP couldn't confirm it. I get a lot of sinus pain and have had migraines after injecting. I know that this could simply be a side effect of Enbrel but my family have all been ill as well so I'm wondering. Today I also had a low grade fever (38.2oC).

How do you guys recognise when you have an infection that needs treating? I don't want to wait for it to get so back that I'm really ill. Any advice is appreciated.
Thx Cathy

lindalegs

Although I'm not on the same medication as you Cathy I would actually ask your GP if you should miss the injection or ring your Rheumy and tell him your concerns and get advice. Sometimes it's hard to decide on your own without anyone medical involved.

Luv Legs

c4thyg

Hi Linda,

I have spoken to my GP but she feels out of her depth as it's a hospital only prescribed drug. I'm still waiting to hear back from the nurse. In the meantime my temperature has gone even higher and as I'm not supposed to be able to get a temp with this drug I've started antibiotics which I have at home. It doesn't matter if I miss a dose of injection except that the arthritis pain gets worse. After yesterdays migraine though I'm not sure I ever want to take it again anyway. The migraines are getting worse and about 6 weeks ago when I was having treatment for my blood disorder I had one that was so bad I had a mini stroke. Even though the rheumatologist says so long as the migraine stops it should be ok, after that event I'm worried about every headache. My blood doesn't clot and it's the first symptom of a brain bleed which likely caused my stroke. My haematologist won't make any comment and the rheumatologist isn't used to dealing with someone with this combination of problems. In the past I've found that I've got better advice from other patients! I'm starting to wonder if putting up with arthritis pain is the lesser of two evils. I go through this every week and Im useless for 2 days each time. My daughter is home ill with a chest infection and I'm struggling to look after her with these migraines. I just feel like I'm in a never ending fight with myself.

lindalegs

What a dilemma for you Cathy :?

I think, if it was me, I'd miss the injection and rely on upping my favourite painkiller for the arthritis pain. Personally I can't function with a little headache let alone a migraine - at least I can think with arthritis pain :roll:

If you have a temperature it sounds as though you have a virus or infection - but I suppose you'd deduced that yourself, sorry

I suggest you make a nuisance of yourself with the nurse, till she gets back to you, sometimes if you just wait they think you've got better and don't need their advice afterall - that's been my experiene in the past.

Let me know what happens and hope you feel better soon.

Luv Legs

tkachev

Are you taking antibiotics now?I am on Humira and was told to stop if prescribed anti-biotics as you cant take both at the same time.I have also been advised to play on the safe side if I have a cold,or sickness etc and not take the injection.It makes it more difficult to fight infection if you have your injection.You might not have to delay for more than a few days.
Alternatively contact the helpline.
Take care Tkachev

c4thyg

Thank you both.

Yes I have started antibiotics and I won't inject again until I've finished the course. I've spoken to the rheumy about it this morning and I'm going to try the lower dose enbrel twice a week instead to see if the side effects are any better. If not I think I can try humira instead. At least then the headache is only every 2 weeks instead of every week.

I'm not sure I have a fav painkiller. Sounds bad doesn't it to have a favourite narcotic!! I guess many of us do. Mine was lodine until I found that my blood doesn't clot and then that was stopped. I haven't found a painkiller as good since. I need the anti inflammatories but they all thin the blood!! I think I could cope with just arthritis or just ITP but both together is a nightmare! The meds conflict with each other. I just wish I could find a treatment that doesn't make me feel like my brain is shrinking. My body has failed me but I want to hang on to what's left of my mind.

The good news is that it's Saturday tomorrow and hubby can look after our daughter and let me sleep for the day. If I'm really lucky he might even cook dinner!!

page35

Hi Cathy
was wondering how you were doing havent seen you for awhile.
hope you start to feel better soon.
hows the potty training going?
take care page

lindalegs

My favourite fall-back painkiller is plain old paracetamol (I realise it doesn't suit everyone). It's often dismissed because you can buy it over the counter but I find if I take it every six hours and build it up in my system, it's great if my Lodine isn't enough.

Do analgesics (sp?) like paracetamol affect your other meds?

Luv Legs

c4thyg

Hi Page,
I haven't been around much. I tend to read more than post lately. About 6-7 weeks ago I had a bad reaction between my meds for different conditions and got meningitis and had a mini stroke so I've been pretty down lately. I tend not to want to talk much then. maybe I should more, who knows. I've just got used to ppl not really wanting to know.

As for the potty training, Meg's doing really well. She wees in the potty but still uses a nappy to poop. She's finally seen the paed about her bowel problems and since he changed the dose of her meds she's been a much happier kid. For now though she isn't able to poop in the potty as it takes her so long. I'm so proud of her though. She knows when to use the potty and when to ask for a nappy. Oh, and she just turned 3 this Sunday. She's got a chest infection at the moment but the antibiotics are doing her the world of good. She's arguing again so she must feel better!

c4thyg

Hi Linda,

I know what you mean about forgetting the over the counter meds, it's easy to do when you have a script for just about anything! I find that paracetamol is still the best thing for a fever (taking it now) but it doesn't do much for pain relief any more. Anti inflammatories are the best for the pain as psoriatic arthur is an inflammatory type but I can't even take ibuprofen or aspirin these days without risking a bleed. It's a shame because for 2 years they kept things manageable for me and without side effects. Codeine is becoming less and less effective these days coz I take them like sweets. All I get now are more side effects! I also wear a Butrans patch which doesn't give me any side effects and helps a little. I'm really hoping by changing my enbrel dosage I can reduce the side effects because it works wonders on the arthur. I haven't used a stick for months now and I can write old fashioned style again!! 2 years ago I tried acupuncture and as a sceptic I was really surprised that it helped. Shame I would bleed too much now to have it done again! Really I should just have a good laugh at the irony of it all. :roll:

page35

oh my goodness Cathy, what a nightmare for you, it all sounds so complicated with your meds to, with all that going on how have you managed to get Meg potty trained? well done.
Belated happy birthday to Megan im glad she is feeling better now.
alot off kids dont like to poo on the potty or loo, my son didnt till he was nearly 4 :shock: , but it is quite common (i work in a playgroup so see lots of kids)
i hope you get your meds sorted and working well for you.
take care
page

hi legs i like paracetamol too going to take some now
would preffer a rum, but needs must, or whatever the saying is.

c4thyg

I think my antibiotics are finally working, my temp is back to normal today and my head is less fuzzy. It might also be because I upped my dose of butrans, but needs must!

I found some interesting articles today about migraines. It seems that it might not be the enbrel or infection that is causing them on their own. My blood condition (ITP) means that I have very low levels of blood platelets (clotting cells) and there is a correlation between platelet function and migraines even in those who have normal platelets. I know my levels are very low at the moment so maybe that's why the migraines are so much more severe. I need to will my bone marrow to get producing and my immune system to stop destroying my platelets. If only mind over matter really did work!

I'm off for a nap now while my daughter is out for the day.
See ya.

c4thyg

Hi Pixy,
I get my bloods done once a week to check my clotting and I get the FBC done. Since I've been on enbrel all my WBC counts are lower because my immune system is suppressed. My inflammatory markers are always above 10 so that isn't reliable either.

I have definitely confirmed an infection now though. High temp and a really bad cold! I think it just takes a lot longer to show up and maybe I assumed that too many things were side effects rather than symptoms. Next time I'm not sure I think I'll leave the injection off and see if I get any worse. If I do then at least my immune system is given a chance to tackle it. This might explain why I've had so many problems with my blood lately, that's autoimmune as well and viruses are a big problem for me. At least now I'm fighting it! Shame that it's not very pleasant though.