I'm 30 years old and began on Humira November las year. I wasn't very bad - I had progressive and aggressive PsA that caused pain and inflammation in my hands and feet, tenderness in my knees and back on occasion and gave me a nasty bout of sacroiliitis. The effect of Humira was almost instant and total. 5 days after the first injection I woke with no pain or stiffness and have been like that ever since. I felt transformed. My father died 3 months ago and I since had some mild pain but nothing like before.
However, now I've hit problems.
I recently moved and began under a different rheumatologist. These revealed that my neutrophil count was at 1.7 and he requested a further test two weeks later. The surgery only arranged this a month later and this latest blood test, last week, revealed that my neutrophil count had dropped further to 1.1. They've since advised me not to travel to London this week or France next, as planned. I'm to have a further blood test this week. I've been advised to leave my next Humira injection and suspend the one following pending a further blood test in ten days. We will only recommence the Humira if my neutrophil count has returned to normal.
As to any other underlying health issues: shortly after starting the Humira I discovered what I thought was a pile. Only later did the GP diagnose this as genital warts and I've been having treatment for these since early June. They've now nearly all gone after a prolonged course of Aldara. I've never had unprotected sex so their occurrence has been both a surprise and unlucky. My consultant has repeatedly asked whether I've been tested for HIV or Hepatitis. When I was diagnosed with the warts I was given a full STI screen, all of which came back clear and I have not had any sex since the tests.
I have been aware for the first time since starting the Humira, these past two/three months, that my immune system has been less reactive than it was when I first began the injections. I cut my leg 10-12 weeks ago on my bike's chain ring and still have the mark from two of the cuts now. Spots appear and then take a very, very long time to heal. This is a recent development. The GP asked whether I felt unwell. I can only say that this past week I feel as I did when I had glandular fever at 13 - incredibly and inexplicably tired, achey (in a manner much like when slightly ill with resulting joint inflammation). I have no temperature or any other symptoms. The tiredness has only be pronounced this past week.
I wonder if any of you have any thoughts; whether any of you have also had low neutrophil counts as a result of anti-TNF (I'm only on Humira, no methotrexate); any thoughts as to underlying health issues.
I'm especially concerned that I might be taken off the Humira. Last year I became very depressed with the ongoing effect of the pain and lack of positive outcomes on other treatment. The Humira has totally transformed my life these past 10months and I'm deeply anxious about my consultant's suggestion about leaving me off treatment altogether if the Humira is shown to be responsible. I'd hope an alternative anti-TNF might me permissible were Humira found to be the cause? I'd be anxious whether I'd be as lucky as with the Humira though. I've had no adverse side-effects, until now should this be it, and no symptoms of PsA either.
What a bummer of a time you’re having. I’m guessing you’d trade the warts for piles in a heartbeat. I had no idea what a neutrophil was so I consulted Wikipedia! It seems like low white cells would be pretty common given the kinds of meds many of us take.
I don’t know about others here, but I’ve been really lucky to have good blood screens every three months. They didn’t look bad on methotrexate or Enbrel. I’m switching to Humira this week myself so I’ll be interested to see what my blood tests look like in December. And I hope that I have as good a response to the drug as you initially experienced. Enbrel worked really well for the first 6 months but it hasn’t been the slightest bit helpful lately.
I hope you get your white cell count back up and that you can find a drug that gives you relief without compromising your health. Best,
Slow down and take a deep breath Michael. you are running a BUNCH of issues together. Neutrophils are what Humira goes after..... http://arthritis-research.com/content/7/2/r250 The other issues are not rleated. You may have to make a change to a nonsystemic like enbrel. Its rare that the normal count doesn't come back with in a few weeks...
Any excuse to avoid France (thats just me) But it sound to me like you have other issues an uncontrolled inflammation that may or may not be PsA.
Now, now, lamb. There’s nothing about France that needs avoiding! Thanks for the article.
Michael, I had no negative reactions to Enbrel, and, like your Humira experience, it worked well right out of the gate. But it just worked less and less well over time and I had to supplement with corticosteroids and then sulfasalazine. My rheumatologist agreed that I was taking far too much of the “helper” drug and if the Enbrel were working for me I shouldn’t need any at all. Onwards.
Sorry I misunderstood you description of the last week or so it sounded like a flare..... Humira works in the blood on the neutrophils where the TNF is made. Enbrel binds itself to the tnf's as they are made (not all neutrophils are created equal.)
In any event its a bit concerning you doc says he has never heard of the lower neutrophil levels with Humira. Its not common but not unheard of either.
First, let me say that I am sorry for your recent loss. And I am sorry that your successes with Humira are now complicated. I can certainly identify with your challenges & share some of the same struggles.
I am currently on Humira but do not have an issue with neutrophils. My symptoms are only marginally managed. I tend to read up online about autoimmune inflammatory illness. While I am not in a medical profession nor would I ever pretend to comprehend all that I read, I did see some articles that said that the medical science understanding of the role that neutrophils play in inflammatory illness is an area of active research and this understanding has recently changed or evolved. Further, it appears there is a known link of Anti-TNF drugs such as Humira resulting in low neutrophil counts in some patients.
As there may be new information available & given that this issue is blood related, have you or your Rheumatologist consulted a Hematologist? It seems to me with the complexity of your situation, it would be better to come at it from both disciplines. I certainly understand your concerns about losing the benefits of the Humira. Up to now it seems you have mostly achieved clinical remission (symptom free on meds). Considering how well you responded to the first biologic you tried, it is probable you would respond well to the others. And it may not be an all or nothing situation with the Humira. I would ask your doctor about the risks and concerns associated with your low neutrophil count. There is, after all, a range of intensity for that condition from mild to severe. There may be some possible trade offs. Perhaps it is possible to still manage your PsA symptoms while taking Humira less frequently which might allow your neutrophil level to return to normal range. Perhaps another biologic will manage the PsA equally well without causing neutropenia. I really do understand the struggles and depression that come from seemingly unmanaged PsA. I understand the fear of returning to that place. But you actually have a lot of options remaining. It may merely be a matter of making some minor adjustments to achieve the right balance. Be vocal with your doctors about your concerns & engage in an active dialog about your options. I wish you luck.
Be careful here reding to much into an incompleted study. One would expect an initial drop in neutraphils. Also one of the things we learned with the IL-6 disaster is that the TnF- mechanism is COMPLETLY different with PsA than with RA. We tend to fail to seperate (as do many of the studies) RA form PsA.
Remember there are usually NO inflammation markers in the blood with Psa (CRP, sed rate etc) Any immunosuppresent will have a an effect on the white cells initially. I'll bet a whole nickle when Michael hears back from the City doc, there will be a whole lot less confusion........
As you said though DandyLion, there are MANY options left.
I have nothing but bad luck with biologics. Enbrel initially worked, but died and gave me massive headaches. Humira was a complete disaster. Stelara is awesome for psoriasis (down from 35 PSI to 5 PSI), but doesn’t help for PSA.
However, that being said, biologics tend to. Make some existing conditions worse. Rarely are they the cause of it (besides cancer).