Dear All

Two weeks ago I started my TNF drug (Enbrel). It took some courage to learn how to self-inject but it is not as bad as I anticipated.
I have had what my GP calls a sweat rash under my boobs for about a month. He prescribed hydrocortisone cream which was slightly clearing it
up until I started the Enbrel. I have to inject once a week and the rash gets worse after the injection. Now unfortunately my boobs
are not what they were and I need a good supportive bra to keep them from dragging on the ground. The problem is they are very sore
underneath with this rash and a tightly fitting bra does not help, so this morning I had had enough and decided to ring my doctors for some advice. It does say on the Enbrel information leaflet that I should seek the advice of my doctor if I have any infection whilst on Enbrel. Needless to say no chance of getting an appointment so was "triaged". The nurse did ring me back very quickly and I explained the problem. Then I had to spell out the name of the drug, then I had to explain about TNF drugs, then I had to explain about rheumatoid arthritis, then I had to tell her what I had for breakfast (only joking). After a long conversation she had no idea about my condition so said she would speak to my GP and get back to me in about an hour and half. She rang me back and said she had spoken to my GP and he could not help me as he knew nothing about Enbrel and I should ring my rheumy team .............arrrrrrrrrrrrgh

I was very lucky and managed to get my Rheumy nurse and she said she did not think it was the Enbrel causing the rash to increase and I should carry on with the hydrocortisone cream. I felt as if I had wasted everyones time and should have just soldiered on.

My faith in my GP has become somewhat rattled. What does worry me is that I am one of two patients who has rheumatoid arthritis at my GP practice which is a large practice in a very large town. It is another indication of how little training our GP's receive in this horrible disease.
I have asked my rheumy nurse to forward some information to my GP so that if I do become really ill whilst taking the Enbrel, I might have a fighting chance of getting some proper help.

Perhaps I should have written this in the "Steam Room" but I am despondent rather than mad.

Jackie

So sorry to hear that your GP practice has absolutely no idea what you are going through. They just don't realise the risks involved with these drugs. I would feel just the same as you. I'm glad you managed to get through to the rheumy team. Please don't hesitate to call them back if it gets any worse. Take care.

Julie

Hi Jackie,

That`s an interesting post. When I started humira - almost three years ago now - my GP, who is great, said I was the first patient at the practice to go onto anti-TNF therapy. He said he felt he didn`t know a lot about it - but he would make sure he found out as much as he could. By and large, he has done so. If in doubt he would ring my rheumy nurse or consultant, but if I go to see him with an infection, or whatever, he automatically takes bloods first, or swabs if it`s my throat, and sends them straight off, then he phones if there`s a problem, or if he`s been in touch with my rheumy on my behalf, so I`m never kept waiting long.

The rash you mention : I frequently get a rash "under there," which my GP puts down to a yeast infection, and prescribes canesten, which normally clears it quickly. I don`t stop humira if I have this, as my rheumy said not necessary.I have also once or twice had a sweat rash, beside an old operation scar, but this is quite different, and just clears up as long as it`s kept dry.

The only other rash I`ve had since starting anti-TNF was on my neck & chest - in the "V" of a V-neck. This was like dry, red, angry blisters, for which I was given Betnovate, a steroid cream which worked like magic.

With your nasty rash, my GP suggested using my hairdryer to gently dry the skin after showering, rather than towel it dry, and this helped. Also, you can tuck a piece of gauze underneath your beast before putting your bra on, that might help too.

Take care,

Kathleen x

Dear All

Thank you so much for all your support and advice. Rash seems a little better this morning and I will take more care with drying etc using your suggestions.

As for the support from my GP, I am hoping that by the next time I see him he will be more up-to-date with what I am taking. I did go to him for some help
in deciding with anti-TNF to go on and he did admit at that time he knew nothing about them but could tell me how much they cost. He is a good doctor and
I hope this has spurred him more into learning about RA and the drugs involved.

Doreen - I am sorry you are getting no support from any rheumy team. That is awful. My health authority have borrowed a team from another authority and I have seen advertisements for new staff for our team. Obvioulsy there is a large hole in qualified RA specialists which does not surprise me in the least.

Take care all of you

Jackie
xx

Well yes i know excaly what you mean .

But i have a g.p in the famlie .They train for 9 years .With most things possable .Some of the courses are only hours long .
but there are millions of stuff that go wrong with your body .So they have a good basic knowalge .
ANTI TF drugs may not been here for long .Which may be why the knowagle is not so good .

My Doc does not know much about MTX but i have the basic knowalge and he has made a big misake when i first went on it iussed it in 10mls
which i had a little bit of basic drug training at work as i used too give meds . this was my second dose and help i was told to take 4 2 and halfs
and i got givin 10 mls in one tab which is my dose so i could had took 4 and that would had killed me and then you would not had too put up with me on here ha ha .

I asked my sister in law they only have the very basic training in R.A enough to know to send up the hospital and do a few tests .
Plus its a hospital based illness .
So not suprised doc does not know . I always take the mtx booklet in if i see a certain doc as anti bo ocs don,t mix with MTX .

If you make a fuss then they should put a thing that comes up on there p.c and the chemists .Also the r.a nurse will imform if asked .( WELL mine does )

i had to tell the skin doc yesterday at hospital that my g.ps are not good with the MTX SIDE of things and if i need extra blood tests though them i would not get or they would not nessarsy look at them either .So i have to doulbe check the MTX side of things not if i know what i am doing ha ha

christine

I think it's the duty of all GP's to learn about these drugs. Mine is brilliant and knows all about the stuff. If he is unsure, he speaks to the rheummies himself to get the info.

Sorry you are having all these problems. Jackie. It's bad enough having to put up with the disease, let alone medics who don't know what makes th meds tick.

I also get the boob probs I think with me it's because they are on the large size though! I find talc is a big help.

Love Jeanxxxxx

Thanks for all your advice.

Jenni - Yes I did speak to the Rheumy nurse yesterday and she said she did not think the Enbrel was causing me the problem as I am not getting a rash around the injection site. They think it is a yeast infection and just carry on with the hyrdocortisone cream, make sure the area is dry and change to cotton non-wired bras.
I was very worried as it specifically says if you have an infection contact your doctor immediately, and as mine seems to get out of hand each week after the enbrel injection, I thought I was right to worry. If it reacts again tomorrow after my next injection I may ask to borrow your red boots and start stamping very loudly so that she will take action and get me seen by someone.

It is a very lonely world with RA and the drugs we take and sometime I become unsure when I should be making a fuss and when I should just get on with it.

Take care

Jackie
xx

Im sorry jackie but the rheummy nurse is not quite right

On the leaflet you will see about red itchy lumps on the sides and round near your breast as a possible side effect.

http://www.enbrel.eu/Por...Enbrel_25mg-PFS_PIL.pdf

I did have injection site reactions too (on my tum and leg where the needle went in) but the red itchy lumps under my arms, round under the breast and down my sides WERE side effects of the enbrel. The drug was on trial then and I got seriously ill, the people who made the drug came to see me in hospital after surgery and noted it all down and it was included in all their literature from then.

I have met 4 others who have had similar reactions and have been treated by a dermatologist, 3 of them were able to continue with the ENbrel. I was not seen by a dermatologist soon enough I had had 3 months of the side lumps before i suddenly got sick.

I took it again after this event for a further 2,5 yrs and was really well RA wise on it with no further lumps and bumps. No injection site reactions either strangely.

Jenni

I hope that your rash is a lot better now. I have found that I am one of the people who suffer with
my skin, plenty of reactions to sun, heat, some creamms etc, I take a lot of dif meds including a anti tnf and have not found
that it makes anything skin wise worse.
I would say that I have also found in general a lack of knowledge with regards the tnf treatment and this includes, to my
amazement my Orthopedic surgeon, who is young and did not know how long I must not take tnf for before my hip op.
I found this strange as a lot of RA ers have to have surgery and I did feel that i must have been one of many.