PLEASE COULD ANYONE HELP ME WITH THIS QUESTION, I WAS PUT ON THE HUMIRA PEN 2 YEARS AGO. AFTER 1 YEAR I ENDED UP WITH BRONCIAL PNEUMONIA, I WAS TAKEN OFF THAT AND HAVE HAD 2 FULL DOSES OF RETUXAMAB, OVER 1 YEAR IE 4 INFUSIONS, I STILL ITCH LIKE HELL DESPITE BEING ON ANTI HISTAMINE TABLETS. WHAT I WOULD LIKE TO KNOW IS, WHAT AM I SUPPOSED TO FEEL FROM THE DRUGS, MY FEET HURT LIKE HELL FEEL TIGHT, MY FOREARM TENDONS HURT WHEN I USE MY HANDS (DESPITE HAVING SWAN NECK FINGERS), IN 6 YEARS OF HAVING THIS RA I HAVE ONLY EVER FELT NORMAL ONCE FOR 1 WEEK, WALKING NORMAL ETC. PLEASE DONT MISUNDERSTAND ME I AM NOT BEING UNGRATEFUL, I DONT EXACTLY KNOW WHAT ANY OF THE DRUGS ARE SUPPOSED TO DO, I KNOW IF JOINTS ETC ARE DAMAGED THEY WONT BE REPAIRED, I HEAR OF FOLK ON DRUGS THAT SAY THEY CAN WALK A FEW MILES ETC IS THAT THE AIM OF THE DRUGS? IM SORRY I CANNOT EXPLAIN WHAT IT IS AM TRYING TO ASK

DAVE

Hi Dave

Wouldn't it be great to take the meds and hope for remission?! Unfortunately, as you rightly say, one sometimes wonders what the drugs are actually supposed to do!

As we know there is no cure and once damaged joints can only be fused to relieve pain or replaced to improve function. Majority of drugs for RA control the symptoms, often by dampening the over active immune system that creates the problems in the first place! After 22 years I have a lot of joint damage but the Enbrel injections have been brilliant in allowing me to live a relatively 'normal' life within reason. There's loads I can't do ... walking miles being one, but so much I can have a bash at! It became very clear having stopped the Enbrel for an operation recently that life without it would be one of extreme pain and almost total disability. It was quite upsetting to find that I wasn't actually as well as I thought I was and frightening too. I now realise the frailty of my joint structures and appreciate even more the benefits of the drugs.

That said I do think that perhaps a review of your meds may be in order as there may be something more suitable that would give you more relief. Have you seen a podiatrist about possible insoles for your shoes to help with foot problems? Perhaps wrist supports may be worth a try to take some of the strain when using your hands? Perhaps alternative pain relief may help? I suspect you have already considered these but just a thought! Perhaps it will come down to surgery to deal with existing damage but if day to day life can be improved for you it's definitely worth considering.

Hope things get better for you soon,

Lyn x

Dave

I fully understand what you are saying. I have been on many different drugs over the last 18 months and I still do not know what quality of life I should be able to achieve or accept. Should I be able to do more in a day than I am at the moment if I found the right drugs or is this the level it is going to be from now on? I don't think there is an answer. All of us are different and all of us react differently to the drugs they give us. I have tried and failed on Enbrel (severe rashes) and have now been on Humira for about three months with no noticeable improvement in my health. All I can think is perhaps I would be a whole lot worse if I was not on any medication.

It does sound, however, as others have suggested that you need a review of your medication. Particulary now we have the chance to try more than one anti-tnf. I hope you get something sorted soon.

Jackie
xx

Dear David, I think that the drugs that we take are meant to make the pain
that we experience much more tolerable without doing us so much damage that we cannot
tolerate them.
My Rheumatologist explained to me that this is "the tightrope" we walk with prescription drugs for R.A.
When I was first diagnosed, 15 years ago, I refused medication as I was so afraid of what it might do
to me.
But not long afterwards I was begging for treatment as my symptoms became so severe.
I asked for the oldest treatment he could prescribe, so that loads of people would have taken it before
me, so I got Hydroxychloriquine Sulphate.
Each persons experience of R.A is different. When we are first diagnosed the Rheumatologist has no
idea how severe or not so severe our R.A will be.
Some people do not get bone erosions, as shown on X ray - others do.
While I show no bone damage I can stay on my current drugs - but if that changes - then so would my
medication apparently.
I choose to deal with my flare ups by not doing any more than I have to.
I do not work and could not imagine doing so - because I pace my life around the R.A.
But other people might not find this acceptable and would really want to work so they would
need stronger medication.
Recently, I tried halving my dose of Hydroxychloriquine, and after one week I had to go back up
to my normal full strength dose as I was experiencing more and more niggling pains.
(By the way I should add that Hydroxychloroquine took 6 months to work for me in the beginning.
Many people do not understand that it takes a long time to kick in.)
It was a drug originally used to treat Malaria and people reported that their Arthritis improved while on it.
Even today it is not understood how this drug can be effective for some people with R.A.
I still hate feeling pains from R.A and look at other people who do not have it with envy, I suppose.
But sometimes I console myself with the thought that their are many worse diseases than R.A out there too!
I am 53 years old now and feeling stiff and achy does not seem as weird to me as it did when I was first diagnosed
at 38.
I hope that my reply to your post helped a little.
I am still learning about R.A too, even after 15 years.
Best wishes,
Fiona

Many thanks for your comments again, sorry not been on line for a bit, we both managed to get away in the caravan for a few days (we had help), i must admit my foot hurt like hell it was if it was in a vice tight, when i was in the shower i could not wash my arms as the pain went from the elbow right down my forarm. this is what i dont understand is the drugs supposed to give me ease of movement, my blood results are low on retuxamab, but as i said my joints are tight, as for the cramps in the upper arm wow, i dare not move at all for the pain.
i see the rhumatologist nurse 22 oct to see how my b cells are, then they do the joint test which is a farting lot of use they cannot understand when they poke and prod why nothing hurts, then they scratch there heads when you tell them it hurts after, yet they never check the feet ,it is if we all stand and walk on fresh air.

well i have been studying everything on bee venom, i have bought some nectar ease from new zealand for us both to try (my wife also suffers with RA). there are some brilliant reports and pain relief, worth reading.

kind regards
to you all dave