Effects of Humira?

General
1

Hi Folks,

I was diagnosed w PA in June. I'm 54. I'd been experiencing that sausage finge. The fatigue r/toe symptom for at least 2 years prior, usually when walking, and especially when walking in heat

I was first put on Methothextr, ate. The fatigue was so awful, and I felt like my ankles and bones in my feet were shattered.

So, doc put me on Humira. Been doing injections every 2 weeks for most of summer. The fatigue isn't as bad on this med, but I often hurt all over. I seem to experience severe runs and stomach ache the day after I do the injections. Headaches, too. These seem to have lessened with each injection.

I am still feeling like my bones are crushed or shattered in feet and ankles. I also get a pain that runs diagonally across the top of my foot.

This past weekend, I broke out in a rash. The reddish bumps are clustered on my feet, espec ially between my toes. I have isolated bumps on stomach, all over legs, on arms, on hands. I looked at images of psoriasis online, and this doesn't look like that. The bumps itch and if I scratch them, they break into bleeding immediately. I am wondering if this is a side effect from Humira? I have never had any kind of psoriasis or rash, so I am wondering if my lowered immunity is causing me to react to something that usually doesn't bother me.

I am a teacher with a very demanding job, and I don't know how I am going to make it through this year. I am afraid of getting sick with the lowered immunity on Humira. I contracted bronchitis and a sinus infection about 2 weeks ago. After a round of amoxicillian, it is still lingering on. I've experienced a lot of runny nose, dripping, but mostly only out of right nostril. Mostly, I am exhausted and scared. I've always been very active, enjoyed hiking, etc... I fear being sedentary and want to keep moving. I took up cello this summer to keep fingers limber. I'm going to crochet an afghan, too.

I want to know what I can do to keep my spirits up and to be proactive with this thing.

I'd like to hear anyone else's experiences with Humira. Will I need to be on this stuff forever???

thanks.

Namaste,

Mari

2

Actually what you are describing sounds like< palmoplantar pustular psoriasis which is becoming mire commonly reported. as a side effect of Humira. The good news is it passes, and often precedes a major improvement. Its almost like the P gods are saying "take this" just befoe they scream Uncle.. I know its tough, right now but there are those who would willingly take the pain for just a few days of the relief from exhaustion. They will need to do some tweaking, but it appears you are really close. Take advantage of the energy you have and start a regular movement program (sort of like exercise) that concentrates on stretching and moving. What doesn't move rusts.

On it forever, prolly, but after a while you wont even know it. As you learn your new life, you develop a new normal. We do that through lfe anyway. The only constant is change anyway.

I always think of my mother who never did get the P under control. More than once she wondered if leporasy might be better. IfThose toes fell off........

I found this if you want more reading: http://www.ncbi.nlm.nih.gov/m/pubmed/19701844/

3

Thanks so much! This all makes me feel a bit more hope. Vitamins? Fooful. I have also been incorporating tai chi daily and quig gong, especially circular patterns. I do feel better when I keep moving. Standing on feet teaching 6 hrs a day has been exhausting this week. Any suggestions for dealing w lowered. immune system? Vitamins? Foods? Anyone have experience w positive tai chi effects?

4

Oh, Mari

How well I recognize what you are saying about the pain in your feet. I remember those pains from the years before I retired from teaching. Terrible.

I cannot comment on your skin manifestations: I’m one of the ones who has PsA with only the slightest signs of Ps. I used to think “fortunately”, but if my psoriasis had been obvious, perhaps it wouldn’t have taken so many years to figure out why I hurt. Anyway, what’s done is done …

I think you need to check with your dermie/rheumie about the skin issue.

I know it’s hard to come to terms with the fact that what we have is incurable. But for most people, PsA is controllable and you can learn to live well with it. Humira forever? Probably not, but most likely something similar for a very long time. That’s the honest answer, but like Lamb says, you will learn your new life. Just remind yourself from time to time that 20 years ago there was nothing much that could be done at all.

One thing you can do for yourself is to learn as much as you can about this disease. Many docs – rheumies included – are not as knowledgeable as they should be about PsA, so you have to become your own advocate. I highly recommend the book that’s listed in the “Book Reviews” tab above. The e-version is a bargain at under $10. (BTW, if you don’t have a kindle you can download software so that you can read it on your computer.)

And finally, do make good use of this forum for information and support. Right here, there are 1700 people, many of whom have problems and questions similar to yours.

5

I had a flare up PP while on Humira. My PP didn’t last more than month and was gone before I got to see the dermatologist. My dermatologist and rheumatologist both said approximately 10% of patients have flares of psoriasis conditions. Upper respiratory infections can be a problem with some biologics. If you haven’t already, id contact your doctor to see what he recommends.

6

Hand hygiene! And don’t let any of those germy kids borrow your pencil or pen.



mari said:
Thanks so much! This all makes me feel a bit more hope. Vitamins? Fooful. I have also been incorporating tai chi daily and quig gong, especially circular patterns. I do feel better when I keep moving. Standing on feet teaching 6 hrs a day has been exhausting this week. Any suggestions for dealing w lowered. immune system? Vitamins? Foods? Anyone have experience w positive tai chi effects?
7

Seenie is so right, hand hygiene is very important. Stand at the door in the morning with a bottle of hand sanitizer. Squirt each grubby hand that come thorough. It’s also great to teach kids how to properly cover their coughs and sneezes, and to always wash their hands afterwards. Obviously, make sure you get your flu and pneumovax. Talk to your doc about both of those. Some hospitals even offer free flu shot clinics for the public.

8

I hope that things improve for you. I can definitely relate to the pain and then the fatigue with the methotrexate. I do remember that when I started the Humira it helped a great deal with the fatigue. Don't get me wrong it's still there, but it did help. And as time went on I began to develop a new normal as Tntlamb is talking about.

I too am around a lot of people in public with my job and I make sure to get my shots each year. I also got the pneumonia vaccine last year. Just something I wanted to do for additional protection. I make sure to wash my hands all the time and keep track of what I touch in public. I'm doing the best I can. I hope things get better for you :)

9

I didn't do well on Humira. It did lift the fatigue, which was a huge improvement, but . . . Horrid headaches for 3 or 4 days after each shot, an itchy, red, bumpy rash on my legs- not near injection site, a malar rash that persisted for about four months after I quit taking it, and bleeding problems, including a hematoma in my mouth.

There are plenty of other biologics, and if you don't get along well with one you can always try another. I talked to my doctor yesterday, and she says research is showing that people who are on biologics for 8+ years have substantially less joint damage than those who are not on them.

Congratulations on taking up the cello. It's a beautiful instrument, and I know several adult beginners who have become quite proficient. Consider it therapy, too: I'm convinced that my nasty little viola habit has kept my left hand from becoming as bad as my right.

10

Hi, Mari! Sorry to hear you are not feeling too well at the moment. I have been on Humira for about 3 months now and I am doing really well. My next shot is on Tuesday and I am looking forward to it. :) My nails look almost normal and I can actually wear jewelry once again. I have been taking tai chi for about 9 months now. I find that I am able to move much better and can keep my balance. I don't think I have fallen since I started class. I just found out about chi gong, but I haven't found an instructor in my area, so I just reference YouTube. My daughter's jujitsu instructor did have some information on chi gong and passed that along to me. Hopefully the Humira will help you as much as it has me. I really hope you begin to feel better soon.

mari said:

Thanks so much! This all makes me feel a bit more hope. Vitamins? Fooful. I have also been incorporating tai chi daily and quig gong, especially circular patterns. I do feel better when I keep moving. Standing on feet teaching 6 hrs a day has been exhausting this week. Any suggestions for dealing w lowered. immune system? Vitamins? Foods? Anyone have experience w positive tai chi effects?