Following a traumatic few weeks and the prognosis of an challenging recovery, Is it too much to ask that my persistently annoying frustrating fatigue issuing defiant unpredictable pet that I own, know as RA GIVES ME A BREAK FOR A FEW WEEKS? It feels it is.
Any tips on how to manage this would be great fully received.
I was diagnosed around 2 years ago and find the fatigue the worst symptom. No good news I'm afraid. We are told to 'pace ourselves'. Good advice but this is the real world and when I feel slightly better I have to catch up on things. As I work full time it's my house and garden that's neglected. Wish I could afford a cleaner/gardener every couple of weeks. I hope you find something that helps you.
I do hope you are on good medication which will work well for you. My life has been transformed since I started Enbrel. From being bed-ridden for three months with fatigue and awful pain, I am up on my feet and walking, at least, two miles every day with the help of my Nordic Walking poles. I wish you well.xx
This gives me hope, Magglen, as I'm due to start Anti TNF soon, possibly Enbrel. I want my life back, too ! So glad it worked for you.
How long did it take to start working?
Do you know, i can't remember how long it took to take effect it is so long ago now....about seven years. I was on Methotrexate to start with but it gave me tummy cramps. Then I went on Leflunomide but my consultant was really keen for me to go on Enbrel so pushed me forward. I am most grateful to him. I do hope it works well for you, Cathie xx
Is Enbrel. An anti TNF drug? I am awaiting new treatments but I can't have an anti TNF drug as I had a bad reaction to cimza which is pins and needles tingling all over my body this is being controlled with gabapentin! Not nice it really feels horrible. I have my RA appointment with the consultant on 2 June where he will discuss my new treatment program. This is not a drug I'd heard of so I'm very interested to find out more
Yes, Enbrel is an anti TNF drug. Really sorry you can't have it but do hope that they will find something that works as well for you as Enbrel has for me..They are coming out with new things all the time so keep your pecker up!
All the best xx
Enbrel is anti-tnf I think its one of the earliest ones. Just because you had a reaction to cimza it doesnt mean the others will react. When I had the infliximab infusion many people there had antihistamine injections beforehand to dampen down the possibility of a reaction. And there are very many of them. I do hope you find a good treatment as RA is so miserable.
C
Magglan wow that is brilliant news. Anti TNF I had was cimzia it's a dream drug but my body don't like it. My consultant has discussed ratuximab as my next move.
What was your bad reaction to Cimzia? I had a bad reaction of pins and needles all over my body I was interested to find out if this is the same as you had?
I developed the same and drop foot to my left foot so stopped the drug. Had nerve released and discussed at length how I could take a risk and re start it. So I did n guess what .... It happened again but foot drop on the right this time.
Did you have pins and needles all over?
I still do have and numbness
So do I... Three months on the now and no improvement I am on 600mg three times a day to try mask the tingling numbness and pins and needles to be honest I don't feel they are working really I feel so low and can't see an end to the problem they keep telling me they don't know of any other cases of people taking Cimzia having the pins and needles my right leg is not working well and the Nero consultant says I drag it when walking
I thought this yesterday did my house work cleaned up in the garden weeding and cleaned patio wanted to do some ironing but felt so shattered slept for two hours in the afternoon. I feel so cross as I feel what a waste of my life having to sleep in the afternoon over so little work
I'm having to sleep a lot too. The most positive take on it is that it feels like another day when I wake up a bit refreshed. But its no joke feeling fatigued is it.
Poor you. Pacing is hard, especially if you are also trying to hold down a full- time job. I'm spending my savings on gardening help, though I still try to do a little, as therapy. It does sound as if your RA might not be under proper control yet, if your DAS is high enough, you should be eligible for Anti TNF.
I can no longer hold down a job who would want to employ me when I am sick so much.. I do often feel like life is passing me by really
Methotrexate - still have too much pain
Fun and a little bit too much running.... Sarah Drew
Who and how much to tell?
