Short time on Humira

General Medications
1

I started taking Humira at the beginning of this year. It was a final stab at slowing the deterioration of my joints which for me is the worst part of my disease. I started getting bladder infections within a month. This is something I have been susceptible to my whole life but never to this degree. I could get them if I didn't take precautions and I was on Macrobid as a maintenance drug. I hardly ever had to take the Macrobid though and I was always careful not to get an infection. Once on Humira, I have to say I found immediate joint pain relief. I never took another pain killer and thought, this is a miracle. For the first month, I thought I was in heaven. Then after the third and fourth shot, full blown horrible bladder infections the next day. I went through three prescriptions of Macrobid since the beginning of the new year and it was only February. I usually went through one prescription a year. I met with my internist (because my rumy dr. didn't think it had anything to do with Humira) and she agreed with my assessment. It simply could not be a coincidence. I determined I would skip a shot and see what happened. Of course, as predicted...no more bladder infections. I skipped the next and will skip the rest. For me the drug worked incredibly well, until it didn't. To a degree, it felt like a miracle but there is no way I can live with bladder infections on a daily basis. I haven't had to take much of my pain drugs since stopping the shots but I do feel my body getting tighter again. I also think the psoriasis was improving and if I had been on Humira longer, I might have seen real progress there. So I am back to fighting the symptoms and not worrying about the long term effect on my body. I was worried about biologics and I fought going on them for nearly 8 years. Now I feel that if it suppresses my immune system for something like a bladder infection, I can only imagine what else is going to "get through". I just wanted to share in case anyone else is thinking of starting H.

2

I and I'm sure WE understand your experience and your great reluctances. I write to encourage you to consider a different biologic, be it Enbrel or something else. Each biologic works in somewhat different ways and the issue you had may or may not occur with a different bilogic.

I am not an MD nor an immunologist but something to discuss with your prescribing doctor might be to increase your immune system a little - maybe the use or increased dosage of vitamin D for instance. Possibly your immune system is on the minimal side of being over active and attacking your body and when on the biologic it becomes too little and thus if you can boost your immune system a little it might be enough to not lead to your infections.

Your anxieties are rational but don't become paralyzed by them. I hope others respond to your posting and have words of wisdom on your issue.

3

Thats too bad. What ever kind of infection you have that develops in 24 hours or less is not a normal (nor new) infection. You really need to see a specialist and at the least get a differential culture both blood and urine, Macrobid is a very narrow band antibiotic pretty much only used for E.Coli and Staph With a creatine Clearance of of 60 mL/min or less it is subtherapeutic in any event. Its pretty rare that ANY PsA patient has a very high creatine clearence given the amount of NSAIDs etc that we take.

I'd certainly ask your Rheumy about it as he is more familiar with prescribing antibiotics than your internist in this case and ask for a referral to an appropriate guy (urologist infectious disease guy etc) What ever you decide to do this needs to get fixed.

4

Thank you for saying that, Dr. Marc. I was thinking that maybe she/he should try a different biologic drug; there are so many now.. Giving up on your joints and the rest of your body is not a good move in the long run. I had some bladder issues after being on Enbrel for a while, but nothing like was described, and they have gone away now. I'm now on Humira and have been for a few years now.

Being rid of the psoriasis and the arthritis is worth trying some other drugs. I can remember the day that my doctor told me that I would never have to have a joint replaced, the stuff was working in stopping the dissolving of my joints. This was more than 5 years ago now.

I just hope she/he does not give up and just let her joints fall apart.

I saw my dad suffer so much. He had psoriatic arthritis before the days of any biologic, and he was miserable with arthritis and psoriasis. No one needs to feel that way anymore.

5

Gosh, I’m sorry you had such trouble. Humira was a wonderful medication for me, I had more comfort on it, than I’d had in years. Unfortunately, the diagnosis of MS ended my love affair with it, I am no longer allowed to use this class of drugs. I have missed it like an old friend. Since it left my system. Please keep in mind that different medications affect different people, well…differently. There are quite a few out there, I also had pretty good results with Enbrel, so I hope you ask your Rheumy about options. Good luck to you, in the future…With things being developed as we speak, there is surely something out there that will be the right match!

6

I’m just about to start Humira. I’ve been on sulphuzalzine, MTX and hoping Humira is going to be the wonder drug it’s been sold to me. I’ve got quite aggressive PSa in my hands, feet and spine. I’m only 36 and had it 18months.
I’m really hoping this will do the trick as I’m at my wits end! With the other 2 biologics they always put my liver function tests thru the roof after showing initial signs of working. My Dr told me we are running out of options. So I now just have to accept this 3 month trial and putting more toxic drugs in my body. I really hope this works!!

7

Cathie, Sulphuzalzine and MTX aren't Biologics but they are very liver/kidney toxic and require constant monitoring (by law in some states.) Humira is handled completely different and is not considered a Toxic Medication. You mentioned you tried two other biologics or did you mean the Sulphuzalzine and MTX?

8

Anything going in my body that shouldn’t be there I class as toxic I hate having to take some many drugs and all the side effects they bring. I’ve got confused with biologics obviously my apologies.

9

No need to apologize.

What I was trying to get at is that if the ones you were referring to were not biologics and Humira is your first "real Biologic" you are in for a treat, you really are. Of all the medications we take the Biologics have the fewest side effects (if they have one its a big one) None of the nausea, upset stomach etc etc that you get with the others. They actually in terms of serious side effect are the safest we take as well. In terms of bad things that happen to us believe it or not the NSAID's (the ones we take like M & M's have screwed up more of us than any.) The worst side effects come from Prednisone, then DMARDs, and the least is the Biologics.

We blame the drugs for a lot. The reality is we have a disease that effects every part of our body, every organ bone muscle, joint, skin. nails, and even our hair. When something goes wrong our first reaction is to blame the drugs. What shouldn't be in our bodies is the PsA, but we get pissed at the drugs because those we can control.

In any event good luck with the Humira, you have been through hell to get to it. Expect good things and they will come your way.

10

I love this answer! Thank you, tntlamb, for always shedding such light…



tntlamb said:

No need to apologize.

What I was trying to get at is that if the ones you were referring to were not biologics and Humira is your first “real Biologic” you are in for a treat, you really are. Of all the medications we take the Biologics have the fewest side effects (if they have one its a big one) None of the nausea, upset stomach etc etc that you get with the others. They actually in terms of serious side effect are the safest we take as well. In terms of bad things that happen to us believe it or not the NSAID’s (the ones we take like M & M’s have screwed up more of us than any.) The worst side effects come from Prednisone, then DMARDs, and the least is the Biologics.

We blame the drugs for a lot. The reality is we have a disease that effects every part of our body, every organ bone muscle, joint, skin. nails, and even our hair. When something goes wrong our first reaction is to blame the drugs. What shouldn’t be in our bodies is the PsA, but we get pissed at the drugs because those we can control.

In any event good luck with the Humira, you have been through hell to get to it. Expect good things and they will come your way.

11

I didn’t mean to be snappy if it came across that way!
I still get quite confused with all the different drugs but yes you are right it’s the PSa that shouldn’t be there.
It’s all the little add-on’s to the PSa I’ve got spondylitis and costochronditis (most likely spelt wrong) and sciatica.
I’m really hoping this drug does what it’s supposed to do and then I can relax and try to enjoy life again. It is so hard to stay up-beat sometimes so here’s hoping. Thank you for your words.

12

Jem before giving up on Humira I hope you will see a urologist/gynecologist. There could be a couple of things going on here that really have little to do with the Humiria. I am an old nurse and have had my share of UTIs. There are some things to try that do not have to do with medications: Urinating after intercourse, washing the tub with a cleaner containing bleach before you soak in the tub, increasing your water per day to 2-3 liters, drinking cranberry juice every day. Then a doctor with uro/gyn specialty can discuss taking a daily low dose drug like macrobid that works in the urinary system only. Or dropping off weekly urine tests to stay on top of anything brewing. They also may have new therapies since I last saw them. It would be a shame to go off a drug that works for you when there are some simple things to try.

Let us know what happens. I am sure you are not the only person here with this concern.

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Mod Note: A post accusing Bens friends of having Drugs reps Salting and/or providing erroneous information in regards to certain medications was removed. The following studies may be of interest:

http://www.ncbi.nlm.nih.gov/pubmed/22886739

Results: During 19,118 person-years of followup, 211 patients died (3.3%; 1.1 deaths per 100 person-years); 85% of the deaths occurred among patients who had been exposed to only one TNFi. We found no statistically significant difference in overall mortality rates across the exposure groups, regardless of adjustment and modeling approach (for infliximab versus etanercept, HR 1.1 [95% confidence interval (95% CI) 0.7-1.7], and for adalimumab versus etanercept, HR 1.3 [95% CI 0.9-2.0]).

CONCLUSION:

Overall, we noted no statistically significant difference in mortality rates between the 3 TNF inhibitors under study. Further studies need to examine whether certain subsets of patients are at increased risk of death with specific TNF

http://www.ncbi.nlm.nih.gov/pubmed/22748510

Results:

Seven thousand seven hundred thirty-four patients initiated an anti-TNF biologic with 13,296 person-years of observation. Seventy-one deaths were identified, including 12 fatal infections and 21 fatal malignancies. The all-cause mortality rate was 5.34 per 1000 person-years. Incidence rates for fatal infection were similar among anti-TNF biologic current exposure groups (0.78 to 0.88 per 1000 person-years). Incidence rates for fatal malignancy were similar among anti-TNF biologic initiator groups (1.24 to 1.84 per 1000 person-years).

CONCLUSIONS:

The all-cause mortality rate in RA patients treated with anti-TNF biologics was lower than in previous studies in similar non-US populations, but comparable to mortality rates in the US general population. Fatal infection and fatal malignancy rates were similar across anti-TNF biologic groups. Further studies, designed to detect risk differences associated with anti-TNF biologic use and baseline risk factors, would provide additional information

There are multiple studies concluding the same. We understand the difficult decision in regards to deciding treatment course. Those decisions are always between patient and doctor. We also welcome discussion and most certainly personal experiences and opinion. However accusation's attacks and questioning any posters motives is not welcome. Bens Friends does everything available to identify just who is accepted for membership her and who is not (we daily reject membership requests) If you have information that indicates any member is not who they appear to be, we request that you message one of the Moderators (who incidentally are not anonymous to each other) with specifics. We are not always successful in vetting membership but will correct immediately mistakes we make.

One discussion however that is not welcome is in Big Pharma Conspiracy theories. We simply are fellow sufferers of PsA and don't have time to deal with it. We have far to many other immediate and personal issues to deal with.

14

that's such a bummer about your suspected Humira/bladder infection link. I too have suffered from recurrent bladder infections and I always have iodine (piridium) pills on hand as infections seem to strike at incredibly inconvenient times (like midnight on a Saturday night/Sunday morning), Before giving up on what seems to be the most helpful drug you've tried, perhaps you could do some work with your rheumatologist or urologist to try to figure out what is happening with your bladder. Good luck. I know that pain all too well...