Two hospital admissions in the last month-disappointing, one pre and one post starting Enbrel. Finally got Enbrel from Healthcare at Home -delivered to wrong place on wrong day but at least in the county I live in. As my rheumatology nurse had suggested I could just go on and do my own injections I watched the Enbrel video -it looked fairly straightforward- and have now done 2 without any injection issues. Not advocating anyone goes down that route but has worked ok for me.
Had a really good week just prior to the last admission seems like the Enbrel had had an effect after just 2 weeks and I had a glimpse of what life could be like again -so am hoping that when over this infection and back on Enbrel that I can recapture that health benefit. I hadn't felt so well for over 2 years. So lying recuperating on the sofa with aching joints is bearable but worried if the trade-off is going to be lots of hospital admissions? Am hoping I've just been unlucky. I knew I would be more susceptible to infection and that was explained by the rheumatologist when I made my treatment choice, but would be good to hear from folk if in practice that has meant for them lots of infections needing hospitalisation?
Statistically the incidence of hospitalization for infections related to biologicals is actually slightly LOWER than that of the general population. The infections related to biologics are pretty specific and very specific
Most of us report having fewer colds flus etc because we are healthier. That's not to say chronic infections can't be a problem. Some people a prone to them anyway the biologics don't help.
As many of you are aware I had a total shoulder replacement 7 weeks ago. A few of you may have picked up there were some complications. Not from the shoulder but rather from a recovery room nurse whom I said at the time was rather sloppy in her cath technique. Having never had a kidney infection, I assumed that pain in back was because I had been off all my meds for nearly 2 mos. Not until I couldn't pee and my wife noticed I was turning a different color did I go go to the doc. Anyway I got an ambulance ride (I use a bike in town) and spent a few days in the ICU and even had the shunts put in for dialysis. The cool thing is my wife decided some of the kids I hadn't seen in a while should come for a visit. Okay, it was scary as hell. the broad spectrum antibiotics weren't working and things were getting worse waiting for the differential cultures. They even asked if the "Bridge Team" should stop by (harp and cello players to help you with your bridge journey to the next life - we are in a college town) Anyway it obviously worked out.
The point of this story is not that I got a bad infection while I was NOT on biologics but rather the next part.... I go to the doc for follow up and he lays out the schedule for the next year, periodic runs of oral antibiotics, monthly UA etc etc. Not that I doubted him but I called my niece the former Queen of Pee for large Practice in the "Big City" (she does bariatrics now) She talked to me like I was 5 year old. "Look Uncle Tom, you are at the age where all "old men" have these problems, prostitis and regularly have other infections" of course they are doing all that stuff, you don't think you are immune do you" You are lucky you are not a lady they have it worse and start earlier. BTW she is a pretty sharp RN (she also has a PhD) She developed and published a Protocol for making a TURP an office procedure.....
Everything will look different when you are looking for it to be. With rare exceptions it isn't.
Thanks for the reply. Do you have a literature reference for your first statement on the statisicaly significant lower hospitalisation for infection for those with arthritis on biologics - this is so different from what I have been told and the little I have read that I would be keen to read more on that study.
Your final statement is a bit of a knock-back to me when I thought the Enbrel had helped me.
Here is the 2000 official FDA study note that adverse events were statistically identical for the placebo group: www.fda.gov/ohrms/dockets/ac/01/briefing/3779b2_02_immunex.pdf
http://link.springer.com/article/10.1186%2Far2984
Here is the definitive study that places risk as equal:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291511/
The thing to keep in mind is that just having PsA or RA ( where the bulk of studies happen) has an increased risk of infection. The studies that lead to the label warnings wer less than 3 infections per 100 patient years. The placebo was 2.7. Because the was an increase the label is changed.
I don’t think Tom, was implying anything about the efficacy of the Enbrel…if you felt better, it was likely working.
Grumpy is correct I was refering to perceptions of side effects, from medications. The question was about hospitalizations. whether enbrel was working didn'cross my mind. I left out the most recent studies look at the tables where PsA is seperated from RA
https://ww2.rheumatology.org/apps/MyAnnualMeeting/Abstract/37706
Anyway hospital visits aren't likley to be an issue at least those caused by the meds......
At my PCP my chart is in a red jacket. I asked what that was all about and the said it was to let who ever pulled my chart when I called the office that I was a "high risk patient" (same with my computer records) I asked what that meant and basically it was they transferred my call immediately, made a same day appointment etc etc.(also called a 222 patient in some offices, Phone calls answered by medical staff in 2 rings assessment in 2 minutes, procedure/appointments with in 2 hours. I assumed because I'm coded as toxic medication management as one of my DX every rheumy appointment, it was because of the medication. I was told medications had NOTHING to do with it. Arthritis patients whether taking biologicals or not were considered high risk from infections and were as high risk as Diabetes (among other) High risk enough in fact that the office rule of no antibiotics without examination could be waived (depending on the symptoms) and there were standing order for some diagnostic tests.
Made my day - not.
Thanks Laura that reference is helpful and in line with what I had read from some of the European disease registry reports. I signed up to participate in all the research registries that my rheumatology nurse gave me the literature on so hopefully my data will be useful to someone in the future. The NHS capacity to link data across to hospitalisations etc is a real bonus.Will be chatting with my rheumatology team at my next appointment, and also will seek some advice from my local general practitioner who is very helpful.
I want to be a 222 patient. Getting the run around on the phone is a pain. But if I need t get really sick for the designation maybe I should work on my meditation instead.
The good thing is you don't have RA Laura, the better thing is that you have what you have AFTER 1995. As agressivley treated patients have FEWER infections now than ever: http://www.ncbi.nlm.nih.gov/pubmed/23547208' I love associations made in studies such as the one you are quoting. They of course as we have discussed many times have zip to do with causation. Also not answered is why there is an incidence ofreinfection. Anyway compare the figures from the two studies Maybe put them on the same chart. You don't even have to do a regression analysis to understand what a great time we live in. maybe its better antibiotics, maybe its better treatment of the disease. but at no time have we had less to worry about from infection.....
You have the exact right idea though, we are high risk patients from the git go even though the studies where PsA patients are separated from RA patients indicate less sohttps://ww2.rheumatology.org/apps/MyAnnualMeeting/Abstract/37706
As you and I have also discussed previously studies are probably the single worst source for learning about our disease. Although I have to admit reviewing, producing, and designing them has provided me a great living. Whatever your "thing is" there is an abundance of studies to support an agenda. The other thing one has to remember there is very little correlation between European and North American post market studies for the biologics. Because of the "rules" and difficulty for Europeans (Especially NHS in great Britain) to get the biologics in the first place they are usually two entirely different populations. there are methods for defining the populations, but few post market studies are anything more than data review. of the affected populations there are far more US and a growing numbers of Canadian patients accessing these drugs earlier in their disease. Thus efficacy and Side effects are markedly different.
Laura E D said:
For trying to get some perspective on this issue for myself, I found the study Risk of hospitalised infection in rheumatoid arthritis patients receiving biologics following a previous infection while on treatment with anti-TNF therapy helpful. With a crude incidence rate of subsequent hospitalised infection of 27.1 - 34.6 per 100 person years it is possible that I will have subsequent infections. So, as I don't like being an inpatient very much I line up for emergency treatment as quickly as possible when I think that something may be going on in the infection front.
It is also interesting that the different biologics have different profiles of association with subsequent infections...with Enbrel in the group with lowest risk of subsequent infections.
My personal experience is that it seems to also depend on what type of infection with what type of bug. Maybe your Rheumatology Nurse or Rheumatologist can contextualise what your infections potentially mean for you, what signs and symptoms to be looking out for and when and where to seek treatment?
http://ard.bmj.com/content/early/2014/03/07/annrheumdis-2013-204011...
No, I would assume if you are on a PsA site thats what you have, Its not the same as RA nor are the effects the same as PsA on the Immune system or the body. Anyone is better off without RA. If you do have RA my aplogies. As you likley know there is a significant risk of death with RA usually cardiovascular but nearly twice the risk of serious infection., both factors PsA patients have little to fear. Consequently much Ra info does not apply.