Hello everyone!
Haven’t been here in a while but I am wondering how you determine when you start a biologic. At one point do the risks of the medication outweigh what’s going on with the disease?
Thanks,
Melissa
I knew it was time when everything else wasn't working, and my fingers/toes were deforming in front of my eyes, and the fatigue was almost impossible to move through. I still find it scary, but I've only had one dose of Enbrel. It stung, made me feel kind of like I had the flu for 3 days, and it's expensive. I feel hopeful, though, that things might not get worse.
Melissa,
It will sting at first... it did for me... I use the autoinjector pen.. and have learned to use it better.. but once in a wile if I have it at the wrong angle.. it does sting a little. It did take about two months to feel any effect.. of course everyone is different.. I did feel a little stomach upset at first .. but it did go away..
Someone hear taught me this phrase.... Fear the disease not the treatment.... that is all I needed to hear.
hope this helps....
Karen
In our Newbies’ Guide, there’s a good article about Biologics –
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/medications-biologic-drugs
I’ll let tntlamb, our numbers guru, run through the relative risks of the biologic medications.
For me, it was time when I finally went with my gut feeling, that my disease was more severe than my doctors seemed to think. I was afraid of becoming disabled because of it. A second expert opinion confirmed that my gut feeling was correct, and I was put on Enbrel. Unfortunately, there had been a great deal of damage done already. (My presentation is atypical, which had confused the issue.) Today, on the biologic, I feel better than I’ve felt for about fifteen years. Unfortunately, my fears of becoming disabled have, indeed, become reality.
I’d say that if your doctor proposes biologic treatment as a possibiliity, you need to seriously consider it. Early and aggressive treatment is the way to prevent damage.
Thanks everyone. I am not worried about the needle. I am a type 1 diabetic so I deal with shots daily. I guess my decision isn’t so clear cut. I’ve been diagnosed for 2.5 yrs. X-rays on hands/feet were normal at diagnosis as they were last week 2 yrs later. I did have an MRI on my hand that did show an erosion in my knuckle. But other than that I feel ok. I told her if life continued on the way it is now I feel its manageable. I have pain/ stiffness upon waking and then various joints hurt here and there. It’s not as if I can move anymore and I think that’s the problem. Sure, I don’t run anymore or exercise like I once did but at 37 yrs old I can play with my kids, spend the day at the pool, etc. sure, I am not 100% and I know that but I also wonder though if I’m “not bad off yet” to start a biologic. Yes, I have heard the mantra of “fear the disease not the treatment” but right now the treatment is scarier to me than the disease. My inflammatory markers are all normal. My doc is just concerned with my one knuckle that seems to be forever swollen. Just don’t know if that’s enough to make the case for a biologic. Of course if I was unable to walk or get out of bed then a bilogic would be a no brainer. Thanks for the article weenie, I will read that.
Inflammatory markers aren’t very good indicators for this disease: close to 50% of us have markers that aren’t elevated. (I still don’t understand that, but that’s straight out of Gladman and Chandran). In my case, and I’m severe, my CRP was only slightly elevated.
Has your doctor presented a biologic as a possibility?
What, exactly, scares you the most about the biologic treatments?
If you haven’t already, you might be interested in reading the book that I recommend under Book Reviews.
Melissa said:
right now the treatment is scarier to me than the disease.
Its a very easy decision. Statistically unless you are a teenage boy with Chrons disease, the biologics do not increase your risk of serious side effects much over that of the general population. Your risk factors are higher because of the disease. Have there been some things reported? Yes. Everything that happens during the phase II studies is listed. It doesn't have to be correlated to the drug just associated. This right next to constipation will be listed diarrhea. After market studs have eliminated (except for the cancer in teenage boys) virtually everything except the Tb link. The risk of serious infections is not higher (those requiring hospitalization) Routine infections are highly individualized some have more some have less.
The only SERIOUS risk is waiting. The erosion you have will never go away. pain coming from damage as opposed to that from inflammation will never go away. Every day that you have inflammation damage is occurring. I used to worry a lot about a knee, until I woke up one morning with a shoulder pain that "just didn't seem right" Had picture snapped that afternoon emailed to the surgeons who sent back a list of possible dates for replacement and had an immobilizing splint delivered to wear until it was replaced.
There is not a single one of the medications we use before the biologics that doesn't carry as many or more worse side effects. More of us have been messed up permanently by prednisone and NSAIDS than have been hurt by biologicals. Sure you can play "with your kids, spend the day at the pool, etc. sure, and are not 100%". just remember every bit you lose of 100% is bigger as you lose it. You will NOT do any of those things with your grandchildren.
There is a thread here call Prayer request. Imagine driving all night to be with your daughter who is likely dying and not being able to bend over to kiss her or hold your granddaughter through the hand holds in the isolette as she is struggling to breathe???? Yeah after few hours (and hell of a couple shots in the ass (torodol, testosterone, caffiene, B-12 and Prednisone) from a very understanding resident) I was able to loosen up enough to do both. Thank GOD things went the right way and I had the time.
The only risk is waiting. if you score high enough to get the Biologicals the benefit WAY outweighs the risk
Seenie said:
What, exactly, scares you the most about the biologic treatments?
If you haven't already, you might be interested in reading the book that I recommend under Book Reviews.
Melissa said:right now the treatment is scarier to me than the disease.
Seenie- I think its just everything that scares me. Almost 6 years ago I was pregnant with my first chikd. As a type 1 diabetic I was scared because of the possibility of birth defects, not making it to term, etc. Well, my diabetes is very well controlled and I got thru that pregnancy with no problems, until delivery. I was in a good hospital in labor with a full term baby and very excited. Problems occurred during labor and I had a crash c section. My son did not get out in time and suffered permanent brain damage and passed away 16 days later. It is because of that event that I walk into everything now expecting the worst. I was so caught off guard that something could happen at the end of a pregnancy that I never want to go through that feeling again. I walk into every situation in life now expecting that the worst can/might happen. That way, if it does, I won’t be surprised. It’s a crappy way to go through life but I don’t know how else to approach it. So, when I contemplate a medication that has XYZ side effects, I assume the worst, and if the worst happens I won’t be shocked.
lamb- thank you for your reply. Since I am in healthcare I know about drug trials and how they must report anything that happens during them. And you are right, the constant NSAID is probably causing more issues than I think, which is partly why I have scaled back on those.
Melissa, a tragedy like that will make you wary of everything. I’m so sorry about your son: I cannot imagine what a loss like that must be like.
I wish I could reach out and give you a hug. Look after yourself in the best way that you can.
I am so sorry that your son is gone, and can’t even begin to comprehend how that sort of grief and turn for the absolute worst must shade your thinking about big medical decisions.
I would like to tell you about my fears with this disease. These are for myself and others, as I don’t want anyone to hurt unnecessarily.
The biggest concern I have is for people who “aren’t that bad yet”. It’s way easier to convince people who feel awful to take their medicine. 
But, people who seem to be better, are much more difficult to get on the bandwagon. And it is understandable, from one perspective. This is my worry though: one can appear to be doing very well, but with years between MRIs and inflammatory markers being about as reliable as weather men, anything can happen. Say your disease seems under control: MRI is good, labs are normal, etc. then you go another two years before another imaging study. A lot can happen in two years. PsA can run amok without any outward symptoms until it’s too late. Then, the next MRI shows damage. Whatever has happened is permanent, and can cause permanent pain. That is my concern. You can surely hop on a bio at that point, but the damage is done. Plus your waiting another month, at least, to even begin a drug, let alone for it to work. Then, if it’s not the right one, you’re on to the next. It’s impossible to play catch up with PsA. So, those are my worries for each and every person who is in your place with the disease.
I’m sure you will read and do the due diligence. Make sure to read good articles, and the book Seenie mentioned, and take the drug pamphlets with a grain of salt. Take good care of you.
Words can't adequately express my sorrow at what you went through losing your son and how difficult every day must be. I completely understand your fear and expectation of the worst possible outcomes in everything.
Let me tell you how I deal with my fears. They don't come from the loss of a baby but also from shock and grief. I came out the other side so I figure that if I survived this I can handle pretty much anything. So now whenever I'm faced with something which scares me I look at what the worst possible outcome could be, get my head round it so I know if it happens "I'll handle it".
It took me a while, a long time in fact, to get to here but, for me, it's turned a negative into the best possible positive (for me). I don't always expect the worst to happen but if it does I'm prepared.
PS. I'm a lot more scared of this disease than I am of its treatments and I'm now on my second biologic.
I can’t imagine what that loss must have been like - and I’m sorry you’ve had to experience it.
I do understand how loss can condition the way you think, however.
For me it was the opposite type of conditioning, I grew up in a family where my dad slowly deteriorated - not just pain and function, but significant depression, which lead to him disengaging with me and my sisters as kids, and a cascade of effects that lead to poor quality of life for both him and the rest of the family.
When he was 37, he could still play at the pool with the kids, but he wasn’t 100%, so mostly he didnt want to or got grumpy as he got tired.
He had a gradual onset, so much so that he wasn’t really diagnosed as having an autoimmune inflammatory condition, or offered DMARDS until he was nearly 60, after an onset at 26. (You all know the story - fibromyalgia, CFS, IBS).
I had a sudden onset. All I could think was that the way it had destroyed his life through what seemed mild means over 40 years, then I would be disabled and in a wheelchair within a couple of years - at 35 - with a two year old. And given that within 6 weeks of onset, the inflammation caused my feet and legs to go numb and me to lose power in them one afternoon, thinking about wheelchairs seemed perfectly logical at the time.
It’s never an easy decision, no matter which direction you come at it.
But if you are going to accept you have a tendency of looking at the worst case, then you would do yourself a service to look at the worst case of the disease, as well as the worst case of the meds.
Or you could look at the best case of both… I can’t give you a best case on untreated disease, because I don’t personally have that experience.
But the biologics have been great to me. I have very few symptoms, play with my little girl happily (our pool is so wonderful in summer), and have a high level job that I travel regularly to remote west Africa for.
Last trip I got unlucky and got Dengue as well as salmonella - not much fun, but I’m thinking that as I had only a dodgy Sunday and a Monday off work with the combination, my immune system works pretty darn well with the help of Humira!
Ps. Yes lamb, I’m competing with you for longest post.
Run, don't skip, to your rheumatologist and begin treatment! I, like Seenie, was diagnosed after a LOT of damage had been done to my joints. Because my mom and grandmother suffered from osteoarthritis, it was automatically assumed that I had it, also. This was at least 25 years ago, and I was finally correctly diagnosed with PsA only a year and a half ago, even though the dactylitis in my fingers had been present for years. There had been time for MUCH damage to occur. I had never heard of PsA until the Phil Mickelson commercials began running on TV, but I thought that since I didn't have psoriasis it was impossible for me to have that disease. I was wrong! I am now in the camp that, although I'm on Mtx and Enbrel, the constant pain in my damaged hand can never be reversed. Also, I've had mid-foot fusions on both feet, which are now held together by bone grafts and screws. My SI joints are shot, and I've had the added insult of not being able to take NSAIDs because of all the years I lived on Advil, and now my kidneys and potassium levels make them an impossible choice for me. I've been on Enbrel since January, and am giving it until July before I say absolutely that it hasn't helped me, but I am certainly more than willing to try another biologic if my rheumatologist and I decide this one isn't working well for me. We have to fight this disease with every weapon in the arsenal! The ramifications of not doing that are just too grave.
Well I'm one of several here (including one of the other mods) who can't say we can't imagine your loss because we can. The circumstances were different of course. I'm not in anyway diminishing that loss, I am confirming that not a day goes by that it isn't as fresh as the day it happened.
That being said you somehow need a way to separate all this. Loss of your child has nothing to do with what this disease can do to you. Just as you need to take care of monitor and treat your diabetes. PsA is no different. It is after all 1st cousin to Type. Certainly what is happening at the moment is of concern, but what can happen is of greater concern.
Thanks for everyone’s replies. Even though I have been living with this now for 2.5 years and going to all doc appts and taking all prescribed meds I think I am still in the Denial/non-acceptance stage. I don’t want to believe that another really terrible thing is going on in my life. I appreciate everyone’s honest opinion and for making me feel better about needing to start with a biologic. I a, currently on sulfasalazine and tried methotrexate but my WBC counts drop too low with the Mtx and I had to stop. I just need to accept the fact that I need something stronger.
Thanks
We’re here to support each other, Melissa. Stay strong.
I thought I denied it for only two months. When it was actually several years before I could accept this disease. I am totally disabled now! I cry when my grandson wants me to pick him up or even chase him.. I have severe back pain.. Sacral, thoracic and lumbar. Disk disease, osteoporosis, osteopenia, osteoarthritis, fibromyalgia, sleep apnea.. Etc.etc.etc. I will always wonder what I could have prevented. Please don't make the same mistake I did that changed my life forever..
Huggs, Karen
Melissa, it's a huge lesson to learn that things can go horribly wrong, and that bad stuff really can happen to you, not just hypothetically. It does destroy the imaginary safety net we all like to think we have. A loss like that of your baby never goes away. You just learn to live with it.
Sounds like you have gone on to bear other children, and I hope they are healthy and a joy to you.
Now, you have something else bad to deal with, and that's PsA, not the biologics. There are lots of stories here from people whose disease did terrible damage they didn't know about until it was too late. Don't let that happen to you! The biologics slow the progression of the disease. If your doc is recommending them, you're ready.