Where to go from here with the Drugs.... Humira???

[brightangel]

Hi I am on the wrong side of fifty and have had the RA since about 12 yrs. Several years now I have been on methotrixate. It has never been great and given me quality of life but I got by. Several months ago I started losing hair and GP didn't comment or suggest anything. From reading here I found increasing folic acid might help so doing it now. Also started getting itchy and Dr Google said likely allergic reaction to Meth. I haven't been having regular Specialist apptments as had a falling out with them some time back. However have good Specialist now. I had been supposed to go on Humira yrs ago but when I found I would be given that as well as the Meth. I declined as I generally don't do well with Drugs. It seems if I go on H. now I may be able to reduce the Meth. eventually but not give it up.

True to form, I have been slow to start the meds but I have been deteriorating and now my munty hands are becoming more useless than before and my forearms are aching and weak. I had in the last few months tried lots of things that had rave reviews, like lypospheric Vit C etc. to help my system but found I detoxed on all of them as they were seemingly too strong for my weakened immune system.

I questioned the Rheumy about having ongoing facial skin problems, some pimples and others seemingly like little sores, including seemingly the re-emergence of a skin cancer which had long since been healed. I wondered if that and other problems were due to Meth. allergy but she said not likely and said I could stop drugs if I felt too bad. Can't stop though as a relative who did recently was even more crippled by doing so.

My skin has improved somewhat but now that the arthritis is worsening it seems I don't have much choice other than to do more drugs. I believe there is a higher cancer risk with the Humira????

I would be grateful for any advice, comments or info. on any of your experiences please. My apptment is a couple of weeks away and I am expected to decide on the Humira by then, having already had the tests. Thank you, in anticipation of your wisdom lol.......

[helixhelix]

I'm giving you a link to a post written by Lucy11 a year ago, showing how Humira has given her her life back. For some people this is a great drug, although nobody can tell you in advance whether it will be the one for you.

We hardly ever hear from her now, as she's off busy living her life. And when you read the posts on here you have to realise that generally people only post when they are having a bad time. So there are loads of Lucys out there finding that Humira is good for them.

It's a personal choice, so only you can weigh up how the risks and benefits add up for you. For me I take the drugs, but make sure that I live the rest of my life as well as possible to reduce other risks. So make sure I stay a good weight, drink very little, exercise daily, don't smoke and don't eat any processed foods.

healthunlocked.com/nras/pos...

You'll work out what's best for you.

[oldtimer]

If you put Humira into the search box, I'm sure that you will find lots of previous posts as many people here are on it. There are other options for treatment too - have a look at the treatment pages on the NRAS site for some more (and balanced) information.

You sound as if you need to do something to improve your condition! Best of luck with whatever you choose.

[brightangel in reply to oldtimer]

Hi Oldtimer, thanks I will take your suggestion re. the search box. I'm not really here much and haven't ventured that far lol. Will also follow through on NRAS site. Thanks......

[PFKAAde]

Hi brightangel

Been on many DMARDS and 3 biologics. Took a long time to find treatment that works, been on Humira for the last 10 years, no noticeable side-effects so far, remission for most of that time including the last few years of totally ‘normal’ CRP and ESR.

No curent active inflammation. Am now reducing Humira to 4 weekly for a year and if no problems stopping taking altogether.

I spent 10 years with lots of inflammation, night sweats, shivers, fatigue, flu-like feelings, two new hips, one new kneee, so some turn around.

Also I have never taken methotrexate with it.

Last 2 years I have come off every other medication - diclofenac, lansoprazole, pregabalin etc etc.

It’s certainly been good for me so far.

🙏🏻

[brightangel in reply to PFKAAde]

Hi PFKAAde,

Thanks for reply. Wow that is very encouraging that it has worked for you, especially long term and without side effects. Helps give me some hope. Interesting too that you like me had spent a long time not managed and this has worked. When I go to my upcoming appointment I will push for wanting to go off the meth. asap to remove the allergic reactions/symptoms. Thanks again.

[PFKAAde in reply to brightangel]

As it’s a while ago now I can’t remember the exact timeline, but I was on MTX for some years and constantly complained of the side-effect (I was physically sick most mornings 🤮).

The first biologic was infliximab which worked but I developed antibodies so was switched to enbrel. This did nothing so I was switched to Humira and allowed to drop the methotrexate due to the ongoing side-effects.

Since then it’s been mainly one way - up! I have still had a knee that became increasingly deformed for a few years until a TKR was needed (at 46), but weirdly there was no obvious inflammation in it.

More recently I have no active inflammation and no noticeable deterioration of joints - although there’s plenty of damage already done such as auto-fused wrists.

But the relative lack of pain and for me the not feeling permanently ill is something I’d given up hope of for a while.

Doesn’t work for everyone, but when it does...

🙏🏻

[brightangel]

Hiya, Yes it seems the meth. isn't great. Mmmmm given you were able to drop the meth. no reason why I shouldn't be able to yet that is why I never went on H. a long time ago because they led me to believe I'd drop the meth. and then I found out I would still have it and didn't want to double up on drugs. That knee must have been a real pain in the butt for you.

I have had the muscle wasting, loss of weight, total reduction in size (I was only small to begin with) and Loss of body strength. More recently I have had to remove all rings off right hand (I used to swap fingers all the time) and now I have to wear on left hand. Right hand has gone massive on knuckles and fingers more deformed and useless. Have grossly deformed thumb with cysts, some of which are supposedly down to the meth. I wonder if the cysts will go when I stop taking it? Will ask the Specialist.

Once again, it is so reassuring to find that you regained some well-being and quality of life. Whilst I have other illnesses as well it is the RA that has the most destructive effect on me and I now have some optimism. Thanks....

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[brightangel]

Thank you dear ladies for your replies I have been really crappy waiting for apptment which comes tomorrow so will see how we go..... Thanks for the encouragement.