Haven't been on in forever! Still trying to fight this disease. Have been on methotrexate, predinisolone & voltarin since Sept. Finally got new insurance and am going to start Humira next week. Any comments on this drug would be appreciated-not sure how long it will take to get some relief if its going to work! I have joint swelling in feet, ankles, hands and wrists. Pain in knees, back and neck and basically all over - I'm sure all can relate! Hope to get some inside info from anyone who has taken Humira! Thanks!
It may work right away, it may not. Most folks get reklief with their first biological. Are you staying on the MTX?
As far as your voltarin goes are you getting it Brand Name or compounded??? I found it pretty worthless until my Rheumy walked across the hall with me and had the Pharmacist whip me up a batch of "Hot Mamma's Balm" which was developed by her mother a small town pharmacist and PsA patient (the reason my doc went into rheumo) Its the Dicloflonec but also some DMSO, Lidocaine and other stuff. She put a some on my hands (I was concerned for lack of strength etc) In any event I'm using ALL my fingers for this post..... (first time in years)
I’ve had lots of relief from Humira. Went from having to have my wife button my shirts to riding my bike to work and shooting pistols in less than a month.
I have taken Humira, Enbrel, Remicade, and now I am on Simponi. I had relief instantly with Simponi compared to any other biologic I have taken.
At the beg. of the year I could barely walk b/c of the pain and of course I have pain still but at least I am not totally helpless. I think you will find Humira will help you along with methotrexate.
I went on Humira, and it started to work for me within the first week. My psoriasis stopped making scales, when they dropped off, there was nothing under, the redness had vanished. My joints also started to feel great after a week or so. It was the first time I actually new how bad I had been. One gets used to thier bodies, but this drug showed me how much better things are. I had no side effects that I can remember, none that sent me to the doctor, it was great. I'm glad you can get it....and while you are on it, there are information lines you can call for any questions you may have, as well as regular Dr appointments and blood work. Great drug
Thanks for all ur responses! Sounds encouraging! Don’t know what its like to live without pain & extreme joint swelling!
Am going to stay on MTX also. I take Diclofenac - had to go off it for a week for a female surgery I had to have and was more miserable than I have been - didn't think that was possible - LOL! So, I know it's doing something. Have tried the voltarin topical cream - does nothing as fas as I'm concerned! Any idea where I can get my hands on some of "Hot Mama's Balm"?
tntlamb said:
It may work right away, it may not. Most folks get reklief with their first biological. Are you staying on the MTX?
As far as your voltarin goes are you getting it Brand Name or compounded??? I found it pretty worthless until my Rheumy walked across the hall with me and had the Pharmacist whip me up a batch of "Hot Mamma's Balm" which was developed by her mother a small town pharmacist and PsA patient (the reason my doc went into rheumo) Its the Dicloflonec but also some DMSO, Lidocaine and other stuff. She put a some on my hands (I was concerned for lack of strength etc) In any event I'm using ALL my fingers for this post..... (first time in years)
So true -about not knowing how bad u really are - had one okay day last month and was like - wow - is this what it feels like to be "normal again"! Haven't ever had the psoriasis thru-out this entire process - original diagnosis was sero-neagative arthiritis/psoriatic arthritis - latest diagnosis in ankylosing spondylitis! Don't totally understand entire disease but i guess pain is pain!
michael66 said:
I went on Humira, and it started to work for me within the first week. My psoriasis stopped making scales, when they dropped off, there was nothing under, the redness had vanished. My joints also started to feel great after a week or so. It was the first time I actually new how bad I had been. One gets used to thier bodies, but this drug showed me how much better things are. I had no side effects that I can remember, none that sent me to the doctor, it was great. I'm glad you can get it....and while you are on it, there are information lines you can call for any questions you may have, as well as regular Dr appointments and blood work. Great drug
Good luck to you, hope it does help1
I HAVEN'T BEEN ON IN A WHILE EITHER, BUT HAVE BEEN ON HUMIRA BEFORE. I WAS FIRST ON ENBREL, AND HAD SOME SUCCESS WITH THIS DRUG. WHEN WE WEREN'T GETTING THE RESULTS WE WANTED, WE THEN WENT TO HUMIRA. I WAS ALSO ON LARGE DOSES OF PREDNISONE AND HAVE BEEN FOR 8 YEARS. HUMIRA DID WORK WELL ON THE PSORIASIS PATCHES ON TOP OF MY FEET THAT ARE VERY BAD AND TAMED THEM A BIT. THEY WOULD SHED AND THEN LEAVE THE REDNESS AND PUSTULAR RASH BELOW. IT WAS BETTER THAN WHAT I HAD BEFORE. THE PAIN ALL OVER DEFINITELY WAS LESS, BUT IT TOOK ABOUT 3 WEEKS FOR ME. IT WAS MIN. RELIEF, BUT ANY RELIEF IS VERY MUCH WELCOMED. I HAVE KNOWN OTHERS THAT HAD GREAT SUCCESS. I ALSO HAVE SLE LUPUS AND THIS MAY HAVE COMPLICATED THINGS FOR ME. I TOOK REMICADE THIS WINTER... THE FIRST TWO INFUSIONS I FELT TERRIFIC THE 3RD DAY AFTER... I WAS SO , SO EXCITED. I HADN'T REALIZED HOW SICK I REALLY WAS UNTIL I HAD A FEW WEEKS OF SOME RELIEF. HOWEVER THE 3RD INFUSION I HAD SEVERE ALLERGIC REACTION TO IT AND ENDED UP HOSPITALIZED AND SICK FOR OVER 3 MONTHS. I WAS SO SICK, CAUGHT EVERYTHING GOING AROUND, SEVERAL ROUNDS OF ANTIBIOTICS, PNEUMONIA, AND BLISTERS ALL OVER MY FACE AND ARMS THAT WE CAN'T SEEM TO GET RID OF, AND THE PAIN IS BACK WITH VENGENCE. I AM HIGHLY RECCOMENDING HUMIRA.... THERE WAS RELIEF FOR ME TO SOME DEGREE, BUT FOR ME... IT JUST DIDN'T LAST FOREVER. I ALSO HAD ONE WEIRD SIDE AFFECT ..... I HAD TREMENDOUS DISCOMFORT IN THE MIDDLE OF MY BACK A COUPLE OF DAYS AFTER INJECTION , BUT IT WENT AWAY A COUPLE OF DAYS LATER. IT IS ONE OF MY VULNERABLE SPOTS FROM PAST INJURY. I WISH YOU GOOD LUCK !
There was a voltarin shortage a while back. So a number of pharmacies started making their own. The beauty of a compounding pharmacy is they can customize a lot of medications. Voltarin all by itself works for some and not for others.All it is is dicloflonec in a cream its an old very cheap NSAID (I buy it for 4.00 at wlly world) Once its put into the gel it suddenly becomes worth 60.00/tube for about a two - three week supply. A compoubding pharmacy can make it for a third of that and give youu twice as much. But wait it gets better....... Do you like bio freeze? How about capiscan sports creams? Anyway they can make what you want. Mamas balm is my fav. Its dicloflonec with lidocaine and DMSO. The pain goes away, course you smell like garlic. But compunding is a great way to go. If you need a reference for one, just PM me. They all have a concoction. My grandpa was the first pharmacist in the state. (montana) I still have some of his formulas. Once upon a time most meds were custom made. I think grandpas cough syrup would be illegal in all 50 states and several foreign countries...........
Hello to everyone in PsA land. I'm kinda new to PsA and this site. This site and new PsA friends have been a blessing. As far as Humira is concerned I've only taken 2 doses and have had minimal improvement if any at this point. I'm optomistic that I'll have relief in the future, however am waiting on finacial help from Abbott Labs in order to recieve additional doses. So far the only relief I get is from heavy doses of narcotics and ice. One gift from Heavin, besides my GREAT wife and kids has been a recumbent bike that I purchased. It's basically the only way that I can get around with minimal to no pain ;~}. Does anyone on this site receive assistance from Abbott Labs to help with the high cost of Humira?
I'm definatley right with ya on the frustated feeling! Hope and pray that you get some relief, and soon. Hang in there!
I think the assistance program I’m on is through them Buickboy. Not sure, just woke up and brain is still unfogging.
I'm just waking up as well and know all to well about the brain fog. What the heck day is it anyway? Oh now I remember, gotta se my Rhemy for my 2nd appointment. Gotta fly . . .
Good luck man 
Keep us posted.
I have found that over time the body builds up a resistance to the Humira, it depends on each individual how long the drug will be effective. As per dosing, once symptoms began to come back (slowly-years) the rhy usually ups the dosage. Once every two weeks, becomes once a week, becomes twice a week. If you are waiting to go on Humira permanently but are only taking injections here and there, I would be a little forward thinking and wait, as your body is already beginning to build up a resistance, especially if you are not getting the relief from the odd injection, and need it on a regular schedule, maybe you should wait. This is just my opinion and everyone is different, plus don't get down, like I have said before, there are other drugs like Humira, and more to come. Talk to your rmy about the possibility of shortening the overall effectiveness of Humira if you take it infrequently.
BuickBoy said:
Hello to everyone in PsA land. I'm kinda new to PsA and this site. This site and new PsA friends have been a blessing. As far as Humira is concerned I've only taken 2 doses and have had minimal improvement if any at this point. I'm optomistic that I'll have relief in the future, however am waiting on finacial help from Abbott Labs in order to recieve additional doses. So far the only relief I get is from heavy doses of narcotics and ice. One gift from Heavin, besides my GREAT wife and kids has been a recumbent bike that I purchased. It's basically the only way that I can get around with minimal to no pain ;~}. Does anyone on this site receive assistance from Abbott Labs to help with the high cost of Humira?
I'm definatley right with ya on the frustated feeling! Hope and pray that you get some relief, and soon. Hang in there!
Hi there,
Yes, I identify with your frustration for sure.
I am in the midst of treating my PsA naturally, using food as medicine. I have taken myself off prescription meds for this bc they were not working for me. I bought the book Eat to Live, by Dr Joel Fuhrman and am on a very strict diet.
I have eliminated caffiene, sugar, artificial sweeteners, animal protein, dairy, soy, alcohol, gluten, I think that is it. This is basically a very strict version of the anti inflammation diet. It is working for me. I had also begun acupuncture for the first time in my life and with that taken Chinese Herbs. I need to get back to that bc when I was doing that I had amazing energy!!! I also try to get to gym 2-3 times per week and do my best to move and sweat.
Anyhow, I still have pain sometimes and that darn fatigue, but I hear on this site that we all do, medicated or not. I am grateful tho’ that this cocktail of things is working for the most part.
Have you tried eliminating the highest of the inflammatory foods? Dairy and Gluten and Alcohol? My friend with MS just started and it has helped her a lot too.
Hope you are feeling better soon.